So, we have been here for a while, as I am sure you are well aware. It will be four weeks on Friday. You are getting better. Getting stronger. Getting more playful and funny. Getting back to yourself. But, it is slow work and not always steady. Daddy thought of a good analogy. . .
Someday you will got on a hike with boy scouts or with our family. Sometimes during a hike you reach a clearing and think, "Wow, I've made it!" Only to realize that you haven't made it and still have a ways to go. You start back on the trail. But it doesn't follow a straight path to the top. There are switch backs. The path zig zags back and forth. Sometimes you even pass ground already covered. It's frustrating, hard work. But, you keep going, wanting to reach the peak and enjoy the view.
Our journey with you the past month seems to have already brought us to "our clearing." It felt glorious to leave the PICU. We thought and were told that we would hopefully be going home within the week. But, we looked up, and have now realized that we still have the rest of the mountain to climb. There are switch backs, lots of them.
The doctors have been trying to figure out your fevers. You still get at least one a day. You have had blood work done, a CT scan on your abdomen and sinuses, urine test, stool test, x-rays of your lungs, ear test, eye test, echo cardio gram of your heart, ultrasound of abdomen and kidneys. Nothing is conclusive. Your white blood cell count and platelet count is up, which usually indicates infection. And yesterday we were informed that your hemoglobin or red blood cell (carries oxygen throughout your body) count is down about 25%. Blood loss. Kind of scary. They say you are either losing blood, not producing blood, or consuming blood. Daddy and I don't know too much about it. And, actually, the docs don't either. You are extremely perplexing to us all. So, I think we are going to be here for a while. Originally, we were told we would get home by Christmas Eve. Didn't happen. I then hoped for sometime before the New Year. Doesn't look like it. I find myself having moments of desperation, thinking "when is this going to end?" Or "will this ever end?" But, we have faith that it will end. We have always known the road would be long. . .but that it would end.
It's seems like Daddy and I are getting more and more tired, but you are getting stronger and stronger. I'll take that trade off any day :) You went into the playroom this morning and did some assisted crawling and walking. You had a great time. Rebecca, your physical therapist, said you could go to the gym tomorrow and climb and slide and scoot. That should be great. Although, it is frustrating right now and we don't see our "peak", we do have our little William back in so many ways. You smile, laugh, play, cry, complain, flirt, hug, and love. I'll take whatever you have to give, and patiently wait for the rest. Keep fighting, little superman. And tell your little body to send some better clues and hints to the doctors, okay?
I am loving you always.
Wednesday, December 29, 2010
Sunday, December 26, 2010
Superman
Hey, little booger. Watch out, this is a long post. . .sorry, don't know what happened :~
Well, we survived Christmas. It was good. Really good. Just different. But, you, Olivia, and Lance had a blast. Santa came to our room. I videotaped it. Priceless. Lance was jumping up and down with anticipation. Olivia was just as excited, but contained herself a little more than Lance. You seemed pleased with him too. He was very sweet. Came bearing LOTS of gifts. After he delivered the gifts and had hugs from all of us he leaned over to you and gave you some special attention. I saw real, true sympathy in his eyes. He said, "Hey William. I am sorry you have to be in here. You get better, okay?"
Olivia and Lance enjoyed opening their gifts and you opened yours too. Most of them we took home for you to play with when you get home. For now you seem to be enjoying the two pacifiers you got from your Kuhrau cousins. Now you have three. You suck on one and hold the other two in each of your hands. Pretty funny. All in all it was a good day. We all missed being together at home, but we were so grateful you were awake and alert and able to enjoy yourself.
You've gone on a few wagon rides in the past few days. You seem to enjoy them. Mommy and Daddy do too. We just wheel you around the unit. Today Olivia, Lance, and I took you to the playroom for the first time. Olivia and Lance are regulars there, so they were super excited to share it with you. When we got to the playroom you, of course, wanted to get out of the wagon. I scooped you up and carried you where you wanted to go. You sat in my lap and colored for a bit with Olivia and Lance. Then you wanted to go play on the floor with toys. You sat in between my straddled legs and played with toys. You were a lot stronger than the last time I did physical therapy with you (Thursday). You are getting stronger in lots of ways. You try to sit up in bed and can almost do it. You are complaining more too. Which is good. Who would have thought? You are getting tired of being in bed and having people poke at you. I am sorry, I laugh at your complaints. I am so glad to see you acting like a normal 19 month old :)
A little side note. . .I have failed to point out that your Dad has been here at the hospital every day, like me. But, the difference is, this is my job. I stay home with you every day and take care of you, while your Daddy goes to work to earn money to take care of our family. He had a good amount of time off saved up, but not enough for him to be gone this long. But, his bosses have been good to him. Very understanding and patient. He was able to get a laptop and do some work from here. We are very grateful and feel truly blessed.
On a medical note. . .you have had some stuff going on it that department. Imagine that. You still are having fevers. Still don't know what that's all about. Your surgeon, Dr. Silen, came in on Christmas. He ordered a bunch of tests to be done to cover any possibility of infection. You have had tests done on your urine, eyes, ears, kidneys, and lungs. All seem to be clear. Tonight you went in for your second CT scan. They wanted to check on the pockets of fluid that they saw in you abdomen from the first scan. They are still there. So, tomorrow you will most likely go to Radiology where they will put a tube in your belly and drain the fluid. They will then watch the fluid and see what grows. Depending on what they find they can then prescribe an antibiotic that will specifically get rid of any infection they find. That will take a few days. I am so grateful you are here and they are so vigilant in getting you better.
Went to church today for the first time since this all started. Olivia really wanted me to take her. It was good. I had a hard time not being too emotional. We have been going to church with the same people for almost seven years. They are like extended family to us. Their support is amazing. So, it was overwhelming to see all these people that I love and that I know love us and that have already done so much for us, but are willing and waiting to do just about anything. Yet, another blessing. It reminds me of the story of the Lord of the Rings. You will become very familiar with this story. One of the best stories of all time. In the end, the Hero of the story, Frodo, is spent, exhausted, and unable to finish the deed he set forth to do. He has given so much. He has nothing left to give. Yet, he is the only one that can do it. It is his burden that he has to bear. But, his trusted friend, Sam, who has stuck with him on his taxing journey understands an important truth. We cannot do it alone. So, when Sam sees Frodo at his bitter end he says to him, referring to the ring which is his burden, "I can't carry it for you, but I can carry you." We all have been asked to carry our own burdens. At times your burdens may seem too heavy to bear. Instead of giving up and succumbing to failure, rely on others. You will still have to carry the burden, but you can let others carry you. I feel as though I am being carried. Carried by so many loving people. Carried by a loving Father in Heaven. We're not meant to do it alone. Just like Frodo, you can be a Hero of your own life. I have seen many heroes through this experience. People who know what they do and who they are matters. People who aren't afraid to help. People who aren't afraid to be the best person they can. People who aren't afraid to do hard things. People who aren't afraid to fail. People who aren't afraid to love.
William, you already are a hero to so many. Keep fighting. Keep growing. Keep learning. Keep helping. Keep doing hard things. Keep loving. I will always love you right back, little superman!
Well, we survived Christmas. It was good. Really good. Just different. But, you, Olivia, and Lance had a blast. Santa came to our room. I videotaped it. Priceless. Lance was jumping up and down with anticipation. Olivia was just as excited, but contained herself a little more than Lance. You seemed pleased with him too. He was very sweet. Came bearing LOTS of gifts. After he delivered the gifts and had hugs from all of us he leaned over to you and gave you some special attention. I saw real, true sympathy in his eyes. He said, "Hey William. I am sorry you have to be in here. You get better, okay?"
Olivia and Lance enjoyed opening their gifts and you opened yours too. Most of them we took home for you to play with when you get home. For now you seem to be enjoying the two pacifiers you got from your Kuhrau cousins. Now you have three. You suck on one and hold the other two in each of your hands. Pretty funny. All in all it was a good day. We all missed being together at home, but we were so grateful you were awake and alert and able to enjoy yourself.
You've gone on a few wagon rides in the past few days. You seem to enjoy them. Mommy and Daddy do too. We just wheel you around the unit. Today Olivia, Lance, and I took you to the playroom for the first time. Olivia and Lance are regulars there, so they were super excited to share it with you. When we got to the playroom you, of course, wanted to get out of the wagon. I scooped you up and carried you where you wanted to go. You sat in my lap and colored for a bit with Olivia and Lance. Then you wanted to go play on the floor with toys. You sat in between my straddled legs and played with toys. You were a lot stronger than the last time I did physical therapy with you (Thursday). You are getting stronger in lots of ways. You try to sit up in bed and can almost do it. You are complaining more too. Which is good. Who would have thought? You are getting tired of being in bed and having people poke at you. I am sorry, I laugh at your complaints. I am so glad to see you acting like a normal 19 month old :)
A little side note. . .I have failed to point out that your Dad has been here at the hospital every day, like me. But, the difference is, this is my job. I stay home with you every day and take care of you, while your Daddy goes to work to earn money to take care of our family. He had a good amount of time off saved up, but not enough for him to be gone this long. But, his bosses have been good to him. Very understanding and patient. He was able to get a laptop and do some work from here. We are very grateful and feel truly blessed.
On a medical note. . .you have had some stuff going on it that department. Imagine that. You still are having fevers. Still don't know what that's all about. Your surgeon, Dr. Silen, came in on Christmas. He ordered a bunch of tests to be done to cover any possibility of infection. You have had tests done on your urine, eyes, ears, kidneys, and lungs. All seem to be clear. Tonight you went in for your second CT scan. They wanted to check on the pockets of fluid that they saw in you abdomen from the first scan. They are still there. So, tomorrow you will most likely go to Radiology where they will put a tube in your belly and drain the fluid. They will then watch the fluid and see what grows. Depending on what they find they can then prescribe an antibiotic that will specifically get rid of any infection they find. That will take a few days. I am so grateful you are here and they are so vigilant in getting you better.
Went to church today for the first time since this all started. Olivia really wanted me to take her. It was good. I had a hard time not being too emotional. We have been going to church with the same people for almost seven years. They are like extended family to us. Their support is amazing. So, it was overwhelming to see all these people that I love and that I know love us and that have already done so much for us, but are willing and waiting to do just about anything. Yet, another blessing. It reminds me of the story of the Lord of the Rings. You will become very familiar with this story. One of the best stories of all time. In the end, the Hero of the story, Frodo, is spent, exhausted, and unable to finish the deed he set forth to do. He has given so much. He has nothing left to give. Yet, he is the only one that can do it. It is his burden that he has to bear. But, his trusted friend, Sam, who has stuck with him on his taxing journey understands an important truth. We cannot do it alone. So, when Sam sees Frodo at his bitter end he says to him, referring to the ring which is his burden, "I can't carry it for you, but I can carry you." We all have been asked to carry our own burdens. At times your burdens may seem too heavy to bear. Instead of giving up and succumbing to failure, rely on others. You will still have to carry the burden, but you can let others carry you. I feel as though I am being carried. Carried by so many loving people. Carried by a loving Father in Heaven. We're not meant to do it alone. Just like Frodo, you can be a Hero of your own life. I have seen many heroes through this experience. People who know what they do and who they are matters. People who aren't afraid to help. People who aren't afraid to be the best person they can. People who aren't afraid to do hard things. People who aren't afraid to fail. People who aren't afraid to love.
William, you already are a hero to so many. Keep fighting. Keep growing. Keep learning. Keep helping. Keep doing hard things. Keep loving. I will always love you right back, little superman!
Friday, December 24, 2010
Eves
Merry Christmas Eve, little man. You are sleeping while I write this. Daddy stayed last night and then I came here with Grandy, Olivia, and Lance. Hung out for a while. Then everyone left and it's just you and me tonight on this Christmas Eve. It's a little hard. I am so tremendously, enormously, fantastically grateful you are getting better and that I still have my little William in this life with me, but I still will miss sharing our traditions with everyone tonight. When you wake up a little later we will open a few presents and watch a little DVD about the Savior's birth, called Luke 2. We watch it every year. Perfect.
Olivia and Lance can hardly wait to come back in the morning. Santa will be here. The REAL Santa. Not a helper. The REAL ONE. Can you believe it? He goes around and delivers presents to all the children in the world and then makes a special stop and the Children's Hospitals to visit the children who are sick. It should be pretty awesome. They have been so great here.
Our new room is good. Different, but good. It's quieter. Nurses sometimes go a couple of hours without even coming in. You are hooked up to monitors that they can always see. You aren't hooked up to as much stuff. You are off oxygen and IV meds. You have your feeding tube that goes up your nose and down to your tummy, your oxygenation and pulse taker that is on your toe, and your "leads." The leads are those sticker things they put all around your chest to measure how many breaths you take in a minute. It also measures your heart rate. But, each of those "attachments" are pretty portable. So, Daddy and I can pick you up whenever we want and hold you. I was holding you yesterday and you reached up as if you wanted me to hold you as if I were hugging you. I did. You squeezed me. Ohhhh, it felt good, you little darling. You also can be disconnected from your leads and oxygenation wires. When the physical therapist comes in you get to sit with Mommy or Daddy on a mat on the floor and play. You are still very weak. You are getting better and holding your head up, but still cannot sit up on your own or stand.
I probably won't write a post on Christmas. So, may I wish you a very Merry Christmas. What an amazing Christmas this has been. So different than I could have ever imagined. You remember I said in an earlier post that sometimes life has to be horrible in order for us to see the glorious and wonderful. Because my life has been touched by some of my worst fears it has forced me to rely on what matters most and to literally let go of what doesn't matter. Taking care of the basics and being okay when the fluff doesn't happen. Being okay not having control of things. And most importantly, understanding that nothing is more important than family and our commitment to each other and to our faith in God. This Christmas I am grateful to our Savior and grateful for the opportunity to celebrate His life and example. I feel closer to Him. I know He knows me, he knows you, He knows us all. He, more than any other, understands our fears, hopes, pain, suffering, and celebration. I have found great peace and security in that knowledge. It has carried me through this. . .and I know He has been with you too. For that I am so very grateful. I guess there is no greater Christmas present than that.
To the Eves in our lives. Merry Christmas Eve. Merry Going Home Eve (it will come). Merry Being All Better Eve (that will come too). And I don't want to think about the Merry Going Away to School Eve. But I am grateful that day will come :).
Sleep well, William. May visions of Sugar Plums dance in your head. I love you!!!
Olivia and Lance can hardly wait to come back in the morning. Santa will be here. The REAL Santa. Not a helper. The REAL ONE. Can you believe it? He goes around and delivers presents to all the children in the world and then makes a special stop and the Children's Hospitals to visit the children who are sick. It should be pretty awesome. They have been so great here.
Our new room is good. Different, but good. It's quieter. Nurses sometimes go a couple of hours without even coming in. You are hooked up to monitors that they can always see. You aren't hooked up to as much stuff. You are off oxygen and IV meds. You have your feeding tube that goes up your nose and down to your tummy, your oxygenation and pulse taker that is on your toe, and your "leads." The leads are those sticker things they put all around your chest to measure how many breaths you take in a minute. It also measures your heart rate. But, each of those "attachments" are pretty portable. So, Daddy and I can pick you up whenever we want and hold you. I was holding you yesterday and you reached up as if you wanted me to hold you as if I were hugging you. I did. You squeezed me. Ohhhh, it felt good, you little darling. You also can be disconnected from your leads and oxygenation wires. When the physical therapist comes in you get to sit with Mommy or Daddy on a mat on the floor and play. You are still very weak. You are getting better and holding your head up, but still cannot sit up on your own or stand.
I probably won't write a post on Christmas. So, may I wish you a very Merry Christmas. What an amazing Christmas this has been. So different than I could have ever imagined. You remember I said in an earlier post that sometimes life has to be horrible in order for us to see the glorious and wonderful. Because my life has been touched by some of my worst fears it has forced me to rely on what matters most and to literally let go of what doesn't matter. Taking care of the basics and being okay when the fluff doesn't happen. Being okay not having control of things. And most importantly, understanding that nothing is more important than family and our commitment to each other and to our faith in God. This Christmas I am grateful to our Savior and grateful for the opportunity to celebrate His life and example. I feel closer to Him. I know He knows me, he knows you, He knows us all. He, more than any other, understands our fears, hopes, pain, suffering, and celebration. I have found great peace and security in that knowledge. It has carried me through this. . .and I know He has been with you too. For that I am so very grateful. I guess there is no greater Christmas present than that.
To the Eves in our lives. Merry Christmas Eve. Merry Going Home Eve (it will come). Merry Being All Better Eve (that will come too). And I don't want to think about the Merry Going Away to School Eve. But I am grateful that day will come :).
Sleep well, William. May visions of Sugar Plums dance in your head. I love you!!!
Wednesday, December 22, 2010
To My Brave Lance
Lancers,
I love you little man. . .I know you don't like me to call you that anymore. So, I love you big man, or middle man :)
This has been quite a ride hasn't it? You are such a trooper. I know it's been hard. I remember Aunt Ali called me about a week or so ago and said you were having a really hard time. You had been crying for a lot of the afternoon. I got on the phone with you and my heart just about broke in two. You were crying and managed to get out "Hi, Mommy." I asked why you were so sad. You sad "I miss you so much." I said, "I am sooo sorry." And you said one of the sweetest things. You simply said, "It's okay." Such a trooper. I came home later that night and you were right at the garage door waiting. You didn't leave my side for the rest of the night. We had a good cuddle session.
Not to say you haven't also been a total stinker, cause you have. You are really good at that and I can't imagine you holding back in this situation. But, all in all I think you have done a good job just being you and coping in whatever way you can manage.
You have also been very brave and very sweet. You take good care of Olivia, when you are not driving her crazy. You remember to pray for Will whenever you pray. I remember the day that William went to the ER and all this started. We were at home. William was sleeping. You and I were playing cars. You abruptly stopped playing and said, "I am going to say a prayer for William." You folded your arms, bowed your head, closed your eyes, and said, "Dear Heavenly Father, thank you for William to feel better." And that was it. You went back to playing. I wouldn't be surprised if that little, faith-filled prayer help him get to the ER before he got even more sick. Thanks, Lancers! Thanks for the hugs and kisses, thanks for the prayers, thanks for the laughs (you say some really funny stuff), thanks for loving me so unconditionally. I know I have fallen short in a lot of ways the past few weeks. But you are still waiting to pounce on me when I walk through the door with showers of hugs and kisses and praise. Please, don't ever stop :)
I love you.
Mommy
I love you little man. . .I know you don't like me to call you that anymore. So, I love you big man, or middle man :)
This has been quite a ride hasn't it? You are such a trooper. I know it's been hard. I remember Aunt Ali called me about a week or so ago and said you were having a really hard time. You had been crying for a lot of the afternoon. I got on the phone with you and my heart just about broke in two. You were crying and managed to get out "Hi, Mommy." I asked why you were so sad. You sad "I miss you so much." I said, "I am sooo sorry." And you said one of the sweetest things. You simply said, "It's okay." Such a trooper. I came home later that night and you were right at the garage door waiting. You didn't leave my side for the rest of the night. We had a good cuddle session.
Not to say you haven't also been a total stinker, cause you have. You are really good at that and I can't imagine you holding back in this situation. But, all in all I think you have done a good job just being you and coping in whatever way you can manage.
You have also been very brave and very sweet. You take good care of Olivia, when you are not driving her crazy. You remember to pray for Will whenever you pray. I remember the day that William went to the ER and all this started. We were at home. William was sleeping. You and I were playing cars. You abruptly stopped playing and said, "I am going to say a prayer for William." You folded your arms, bowed your head, closed your eyes, and said, "Dear Heavenly Father, thank you for William to feel better." And that was it. You went back to playing. I wouldn't be surprised if that little, faith-filled prayer help him get to the ER before he got even more sick. Thanks, Lancers! Thanks for the hugs and kisses, thanks for the prayers, thanks for the laughs (you say some really funny stuff), thanks for loving me so unconditionally. I know I have fallen short in a lot of ways the past few weeks. But you are still waiting to pounce on me when I walk through the door with showers of hugs and kisses and praise. Please, don't ever stop :)
I love you.
Mommy
To My Sweet Olivia
Olivia,
I have been writing a lot to William, but I realized tonight that I haven't written anything to you. You have played a big part in this story and there are some things I want you to know and to remember.
First of all, I love you, my little Sugar Plum. You have been so strong and so courageous through all of this. I can tell it has been pretty hard for you. I see your sadness, frustration, concern, loneliness, and impatience. You've had to carry a lot. Helping to make sure whoever is doing the "Mommy" job is doing it right. Being kicked out of your room for almost 3 weeks now. Not having your family together. Not having Mommy come and volunteer in your classroom or come to your tap practices. I have hated not being there. I love you. I live for those moments with you. I find so much joy in watching you grow and learn and laugh. I miss you.
We had a good talk last night about everything. You seem okay. We talked about feeling sad and lonely. We talked about just feeling "flat" or "blah." Not wanting to do anything and not seeing much to be happy about. It's no fun feeling that way. I have felt that way too. But, thank goodness we have found some things to be happy about.
I am so proud of you. I am so grateful that you knew how to ask for help from your classmates at school. I love the way you pray for William and have the faith that your prayers will be heard. I love the way you prayed to be happy and found answers to that prayer too.
Always know you are loved. You are such an amazing example to all of us. Be happy and have courage to do the important things that are sometimes hard. Have faith that you can do it. Always know we are here for you.
I love you.
Mommy
I have been writing a lot to William, but I realized tonight that I haven't written anything to you. You have played a big part in this story and there are some things I want you to know and to remember.
First of all, I love you, my little Sugar Plum. You have been so strong and so courageous through all of this. I can tell it has been pretty hard for you. I see your sadness, frustration, concern, loneliness, and impatience. You've had to carry a lot. Helping to make sure whoever is doing the "Mommy" job is doing it right. Being kicked out of your room for almost 3 weeks now. Not having your family together. Not having Mommy come and volunteer in your classroom or come to your tap practices. I have hated not being there. I love you. I live for those moments with you. I find so much joy in watching you grow and learn and laugh. I miss you.
We had a good talk last night about everything. You seem okay. We talked about feeling sad and lonely. We talked about just feeling "flat" or "blah." Not wanting to do anything and not seeing much to be happy about. It's no fun feeling that way. I have felt that way too. But, thank goodness we have found some things to be happy about.
I am so proud of you. I am so grateful that you knew how to ask for help from your classmates at school. I love the way you pray for William and have the faith that your prayers will be heard. I love the way you prayed to be happy and found answers to that prayer too.
Always know you are loved. You are such an amazing example to all of us. Be happy and have courage to do the important things that are sometimes hard. Have faith that you can do it. Always know we are here for you.
I love you.
Mommy
Looking Back. Looking Forward.
Posted some new pics of you on the blog today. Pictures of Daddy and me holding you for the first time in two weeks. Pictures of you awake and smiling. And a silly picture of Lance that Olivia took. I decided to put that one on because it reminds me that kids are resilient and that Lance and Olivia, although they miss having Mommy and Daddy home together, they still can have fun. And it just makes me laugh.
More good news and progress today. They hope to have you out to the ICU in the next few days and maybe as soon as tomorrow. That is crazy to think about. It's hard to believe this little adventure may actually end. But I think I can see the end of the tunnel. When you move to the 10th floor, out of the ICU, you will probably only be there for a few days and then go home. So, maybe only another week of this. Crazy. Exciting. Relieving.
Doctors are still watching you and your fevers. They haven't come to a consensus on what to do, but are watching you closely. No fever today, until about 6pm. They think it might just be your body reacting and getting better.
Came out of isolation today. No more yellow gowns and masks. Hooray for that. That was a real drag. You drank some apple juice out of a sippy cup today, not much, just a little. You slept a ton. And you went for a wagon ride! It was cute. Stephanie, your nurse, set up the wagon with some blankets and pillows and then hooked you up to a portable oxygen tank and monitor and off we went. We took two laps around the ICU and you looked pretty "chill." Had one hand behind your head. Had a half grin. But a very satisfied look that's for sure. It felt a little like a Halloween parade with all the docs and nurses smiling and cheering you on. It was sweet seeing you do some more "real boy" things today.
As we get closer to going home I find myself scared. It feels a little like taking a newborn home for the first time. I am used to having your nurses here if I have any questions. I am used to just taking care of you or just taking care of the big kids. I am afraid to do both. The social worker said that it is normal for things to kind of "fall apart" when a sibling comes home from the hospital. I was dreaming that it would all be wonderful and blissful when we brought you home, but now I am envisioning more hard stuff. We can do hard stuff though, right? If we survived these past two and half weeks we can survive anything. This experience has definitely shown me what it means to survive. When we have something to live for and something to fight for, just about anything is possible. Fighting for you and for our family was an instinct, just like the quote from the last post, you never know how strong you are until you have to be. What a blessing! I hope you get something from all my ramblings. I have learned so much and don't want to forget a minute. Someone asked me the other day if I wished I could just forget some of the awful things that have happened. No. I don't want to forget a moment. Each moment, awful or amazing, showed me the power of love and the power and love of God. I need this blog to help me always remember. . .everything.
I love you, William. I love you. I love you. I love you.
More good news and progress today. They hope to have you out to the ICU in the next few days and maybe as soon as tomorrow. That is crazy to think about. It's hard to believe this little adventure may actually end. But I think I can see the end of the tunnel. When you move to the 10th floor, out of the ICU, you will probably only be there for a few days and then go home. So, maybe only another week of this. Crazy. Exciting. Relieving.
Doctors are still watching you and your fevers. They haven't come to a consensus on what to do, but are watching you closely. No fever today, until about 6pm. They think it might just be your body reacting and getting better.
Came out of isolation today. No more yellow gowns and masks. Hooray for that. That was a real drag. You drank some apple juice out of a sippy cup today, not much, just a little. You slept a ton. And you went for a wagon ride! It was cute. Stephanie, your nurse, set up the wagon with some blankets and pillows and then hooked you up to a portable oxygen tank and monitor and off we went. We took two laps around the ICU and you looked pretty "chill." Had one hand behind your head. Had a half grin. But a very satisfied look that's for sure. It felt a little like a Halloween parade with all the docs and nurses smiling and cheering you on. It was sweet seeing you do some more "real boy" things today.
As we get closer to going home I find myself scared. It feels a little like taking a newborn home for the first time. I am used to having your nurses here if I have any questions. I am used to just taking care of you or just taking care of the big kids. I am afraid to do both. The social worker said that it is normal for things to kind of "fall apart" when a sibling comes home from the hospital. I was dreaming that it would all be wonderful and blissful when we brought you home, but now I am envisioning more hard stuff. We can do hard stuff though, right? If we survived these past two and half weeks we can survive anything. This experience has definitely shown me what it means to survive. When we have something to live for and something to fight for, just about anything is possible. Fighting for you and for our family was an instinct, just like the quote from the last post, you never know how strong you are until you have to be. What a blessing! I hope you get something from all my ramblings. I have learned so much and don't want to forget a minute. Someone asked me the other day if I wished I could just forget some of the awful things that have happened. No. I don't want to forget a moment. Each moment, awful or amazing, showed me the power of love and the power and love of God. I need this blog to help me always remember. . .everything.
I love you, William. I love you. I love you. I love you.
Tuesday, December 21, 2010
A Real Boy
Another good day. You are still having fevers though. The docs and nurses are a little perplexed. Initially, they thought it was because of the cold virus you had, but the viral infection should have already run it's course. You may have another. Or, it could be caused by one of your antibiotics. I guess some antibiotics, when used for too long can cause fevers. The surgeons called for you to get a CT scan of your abdomen to rule out any infection in your intestines or belly. So far the CT scan didn't show anything. Now we are waiting for the culture from two days ago to come back to see if you have another viral infection. Questions, questions. Waiting, waiting.
Let's see, what fun things did you get to do today? Well, the physical therapist came by to play. We played with bubbles (gonna have to take a pic of that), cars, and you played pass with a ball. It was awesome. And you did all that while sitting in my lap, like a regular ol' boy. . . minus all your tubes and your wobbly head. You got to go for a ride in your bed to the CT scan room here on the 8th floor. You got to go out of your room, on a little adventure. You haven't been out of your room since you were sedated and went to the ER. You seemed entertained. You also got a sponge bath. Kim, your nurse, wiped you down with warm wash cloths. Sometimes you seemed to enjoy it. Other times you just seemed irritated. But, you look good! Daddy said if you went many more days your hair would sprout dreadlocks. And, finally, you got some jammies. Kim said you needed some clothes so that you would look like a "real boy." I liked that. You look cute, and cozy.
You slept a lot today. Most of the time when you sleep you put your hand behind your head. Everyone gets a kick out to that. Breathing is good. Heartrate is good. Respiratory therapy is going well. Good, good, good.
The resident, David, came by today to say that today would be his last day. He would be leaving for a winter break and when he returned we would be gone. He gave you a gift. A book, "Zen Shorts" by Jon J. Muth. Wonderful book. Seems applicable to our experiences here. But, it will be applicable throughout our lives too. Such wonderful people here. We are so blessed. Here is what David wrote on the inside cover of your book:
"Will,
Taking care of you in the ICU inspired me. Your incredible family taught me that love is the ultimate medicine. As you grow up, consider their support your greatest strength.
Enjoy these stories, be wise, and STAY well!
David"
Sweet, good words. Wise words for us all. I have realized, through this experience, that my family (friends, neighbors, and even people I have not met) are my greatest strength. What a realization. We are not alone. And we need each other. I love that.
I love you, little booger :)
Let's see, what fun things did you get to do today? Well, the physical therapist came by to play. We played with bubbles (gonna have to take a pic of that), cars, and you played pass with a ball. It was awesome. And you did all that while sitting in my lap, like a regular ol' boy. . . minus all your tubes and your wobbly head. You got to go for a ride in your bed to the CT scan room here on the 8th floor. You got to go out of your room, on a little adventure. You haven't been out of your room since you were sedated and went to the ER. You seemed entertained. You also got a sponge bath. Kim, your nurse, wiped you down with warm wash cloths. Sometimes you seemed to enjoy it. Other times you just seemed irritated. But, you look good! Daddy said if you went many more days your hair would sprout dreadlocks. And, finally, you got some jammies. Kim said you needed some clothes so that you would look like a "real boy." I liked that. You look cute, and cozy.
You slept a lot today. Most of the time when you sleep you put your hand behind your head. Everyone gets a kick out to that. Breathing is good. Heartrate is good. Respiratory therapy is going well. Good, good, good.
The resident, David, came by today to say that today would be his last day. He would be leaving for a winter break and when he returned we would be gone. He gave you a gift. A book, "Zen Shorts" by Jon J. Muth. Wonderful book. Seems applicable to our experiences here. But, it will be applicable throughout our lives too. Such wonderful people here. We are so blessed. Here is what David wrote on the inside cover of your book:
"Will,
Taking care of you in the ICU inspired me. Your incredible family taught me that love is the ultimate medicine. As you grow up, consider their support your greatest strength.
Enjoy these stories, be wise, and STAY well!
David"
Sweet, good words. Wise words for us all. I have realized, through this experience, that my family (friends, neighbors, and even people I have not met) are my greatest strength. What a realization. We are not alone. And we need each other. I love that.
I love you, little booger :)
Monday, December 20, 2010
You Never Know. . .
Another good day. No set backs, just slowly moving forward. Nurses took off your "in-between" ventilator. Now you just have the small tubes up your nose, pumping oxygen. They say they may have to go back to the ventilator, depending on how you do. Took some pictures of you today. . .smiling at your nurse. Another, "Are you kidding me?", moment. You don't seem to be anxious with the doctors and nurses anymore. You play with them and even flirt with the women :) Oh, it's good to see parts of my William coming back. I have missed you so much! I pulled out a lot of the toys that have been donated to the hospital and handed out to the children here. You played with cars, your doctor kit (the stethoscope was your favorite. you've seen a lot of those lately.), and a dragon.
You are officially off your TPN and lipids. Those were both nutrition that they were giving you intravenously. You are now being fully fed into your gut. Doctors say that we are meant to be fed through our gut and that our body can only survive so long with the TPN and lipids. You can tell the difference. Ever since that started giving you food into your gut your coloring and energy has changed. You are being fed by a tube that goes up your nose and down into your stomach. In the next few days they hope to let you have something from a sippy cup.
Progress, progress. It feels so good. I am so happy. I am so relieved. The resident here, David, walked by your room today and looked in on you and saw you playing and saw that you were doing well without the ventilator. He looked surprised and then smiled and gave a little "good job" to you. I was surprised because this made me cry. Cry with gratitude and relief. You are getting better. I always knew you would, but seeing it happen is entirely different than just having faith. The realization of your faith is an awesome thing.
I find myself mourning a little for Christmas. It miss the way it used to be. It will take me a while to get used to the changes that have taken place. Some things will come back. Some things won't. And we have gained so much more than we have lost, but I still will miss the lost things. Like this Christmas. I'm pretty sure we won't all be home together. We will make it work, but it won't be the same. And that's a little sad. I anticipate next year will be an amazing Christmas for us. And, I think we will need to have a little extra Christmas type celebration when you do come home :) Okay, I feel better now.
A good friend of the family sent this quote to Grandma:
"You never know how strong you are until being strong is the only choice you have."
It's true. There are so many things I didn't know before this that I do know now. I didn't know I could do this. I didn't know that I could have the faith in my Heavenly Father that you would live and get better. I didn't know how much my friends and family love me and you and our family. I didn't know how much people we haven't even met could love us. I didn't know how much others love and support could carry me. I didn't know how much I love all those people. I didn't know how much I love you. I didn't know how much I love your Daddy, your Olivia, and your Lance. I didn't know how much I love my Heavenly Father and my Savior Jesus Christ. They are real. I have felt their love and their complete understanding of who I am and who you are and what we are going through. I believe we are given trials to help us realize that we can't do any of this alone. I know that now. I know that we have the opportunity every day to ask for and give help. To love each other. To love God.
You are my little Champion. My little Warrior. Thank you, for being so strong. Your strength has given me the will to fight for you, for our family. I love you, little man!
You are officially off your TPN and lipids. Those were both nutrition that they were giving you intravenously. You are now being fully fed into your gut. Doctors say that we are meant to be fed through our gut and that our body can only survive so long with the TPN and lipids. You can tell the difference. Ever since that started giving you food into your gut your coloring and energy has changed. You are being fed by a tube that goes up your nose and down into your stomach. In the next few days they hope to let you have something from a sippy cup.
Progress, progress. It feels so good. I am so happy. I am so relieved. The resident here, David, walked by your room today and looked in on you and saw you playing and saw that you were doing well without the ventilator. He looked surprised and then smiled and gave a little "good job" to you. I was surprised because this made me cry. Cry with gratitude and relief. You are getting better. I always knew you would, but seeing it happen is entirely different than just having faith. The realization of your faith is an awesome thing.
I find myself mourning a little for Christmas. It miss the way it used to be. It will take me a while to get used to the changes that have taken place. Some things will come back. Some things won't. And we have gained so much more than we have lost, but I still will miss the lost things. Like this Christmas. I'm pretty sure we won't all be home together. We will make it work, but it won't be the same. And that's a little sad. I anticipate next year will be an amazing Christmas for us. And, I think we will need to have a little extra Christmas type celebration when you do come home :) Okay, I feel better now.
A good friend of the family sent this quote to Grandma:
"You never know how strong you are until being strong is the only choice you have."
It's true. There are so many things I didn't know before this that I do know now. I didn't know I could do this. I didn't know that I could have the faith in my Heavenly Father that you would live and get better. I didn't know how much my friends and family love me and you and our family. I didn't know how much people we haven't even met could love us. I didn't know how much others love and support could carry me. I didn't know how much I love all those people. I didn't know how much I love you. I didn't know how much I love your Daddy, your Olivia, and your Lance. I didn't know how much I love my Heavenly Father and my Savior Jesus Christ. They are real. I have felt their love and their complete understanding of who I am and who you are and what we are going through. I believe we are given trials to help us realize that we can't do any of this alone. I know that now. I know that we have the opportunity every day to ask for and give help. To love each other. To love God.
You are my little Champion. My little Warrior. Thank you, for being so strong. Your strength has given me the will to fight for you, for our family. I love you, little man!
Saturday, December 18, 2010
The Tube
Tried to write a post last night about your progress. I was typing with one hand while holding your hand with the other. I was about half way through and I deleted it by accident. Whoops.
Past few days have been good. Progress. Grandy and Grandpa came into town to help with Olivia and Lance. They came straight from the airport to the hospital. You were a lot for them to take in. I seems that no matter how well I try to describe how you are and all the tubes that are going into you and all the machines that are helping you, one can't fully grasp it until they are right in front of you. It's a lot. Daddy and I see how far you have come and can see the improvement, but new comers still see a really, really sick boy. You are still very sick. But, you are getting better. You are definitely a fighter :)
I spent about 24 hours away from the hospital and you and Daddy this weekend. Olivia had a dress rehearsal and recital this weekend. She did awesome. She was Rudolph the Red Nosed Reindeer, in tap shoes. It was cute. Olivia and Lance came to see you yesterday. Gave you love. Played upstairs in the playroom. Got tired out and went home.
The doctors discovered, through listening and X-ray that your right lung had collapsed and had fluid around it. So, you have been going through "respiratory therapy." They beat on your chest with a rubber pad, blow stinky medicine in your mouth and nose with a nebulizor, and put a mask on you that stimulates coughing. Then they stick a small tube up your nose and down the back of your throat to suck out any mucus you are not getting rid of. Yuck! Needless to say, you don't like the respiratory therapist :) But, you are getting more and more used to it so that you kind tolerate it now.
On a happy note, you are even more alert and yourself. Last night, after everyone else had left, it was just the two of us in the room together. I was talking to you and you suddenly lifted up your arm and pointed straight at the TV. I asked you if you wanted to watch TV. You nodded. I asked if you wanted to watch Toy Story. You nodded and smiled. Are you kidding? That was awesome!!! I was completely stunned and ecstatic. Later on last night you did more pointing, some clapping, and what I would call your dancing. You raise your hands above your head and kind of wiggle your body. It was so cool. So, we were dancing and cheering together. I am sure someone walked by the room and thought for a moment I was crazy then remembered where we are and that there is no such thing as crazy when you are celebrating your child feeling better. Even later on you seemed done watching Toy Story so I turned the regular TV on and started flipping through channels to find some cartoons. We passed ESPN. A Bowl game was on and your arm flew up to point at the football game. I asked if you wanted to watch football and you nodded and smiled. Your Daddy (and many others I can think of) will be proud :)
All in all things are going really well. I am seeing more and more of the William I have been missing so much. There are still little hiccups, but you are showing so much strength and will to get better that no one seems too worried. So, Mom, Dad, Olivia, and Lance are just trying to stay patient and endure being separated. It's hard work, but we can do it! We love you so much and just want you to get better and come home. Go, Team Russell!!!
Past few days have been good. Progress. Grandy and Grandpa came into town to help with Olivia and Lance. They came straight from the airport to the hospital. You were a lot for them to take in. I seems that no matter how well I try to describe how you are and all the tubes that are going into you and all the machines that are helping you, one can't fully grasp it until they are right in front of you. It's a lot. Daddy and I see how far you have come and can see the improvement, but new comers still see a really, really sick boy. You are still very sick. But, you are getting better. You are definitely a fighter :)
I spent about 24 hours away from the hospital and you and Daddy this weekend. Olivia had a dress rehearsal and recital this weekend. She did awesome. She was Rudolph the Red Nosed Reindeer, in tap shoes. It was cute. Olivia and Lance came to see you yesterday. Gave you love. Played upstairs in the playroom. Got tired out and went home.
The doctors discovered, through listening and X-ray that your right lung had collapsed and had fluid around it. So, you have been going through "respiratory therapy." They beat on your chest with a rubber pad, blow stinky medicine in your mouth and nose with a nebulizor, and put a mask on you that stimulates coughing. Then they stick a small tube up your nose and down the back of your throat to suck out any mucus you are not getting rid of. Yuck! Needless to say, you don't like the respiratory therapist :) But, you are getting more and more used to it so that you kind tolerate it now.
On a happy note, you are even more alert and yourself. Last night, after everyone else had left, it was just the two of us in the room together. I was talking to you and you suddenly lifted up your arm and pointed straight at the TV. I asked you if you wanted to watch TV. You nodded. I asked if you wanted to watch Toy Story. You nodded and smiled. Are you kidding? That was awesome!!! I was completely stunned and ecstatic. Later on last night you did more pointing, some clapping, and what I would call your dancing. You raise your hands above your head and kind of wiggle your body. It was so cool. So, we were dancing and cheering together. I am sure someone walked by the room and thought for a moment I was crazy then remembered where we are and that there is no such thing as crazy when you are celebrating your child feeling better. Even later on you seemed done watching Toy Story so I turned the regular TV on and started flipping through channels to find some cartoons. We passed ESPN. A Bowl game was on and your arm flew up to point at the football game. I asked if you wanted to watch football and you nodded and smiled. Your Daddy (and many others I can think of) will be proud :)
All in all things are going really well. I am seeing more and more of the William I have been missing so much. There are still little hiccups, but you are showing so much strength and will to get better that no one seems too worried. So, Mom, Dad, Olivia, and Lance are just trying to stay patient and endure being separated. It's hard work, but we can do it! We love you so much and just want you to get better and come home. Go, Team Russell!!!
Fragile
Not quite sure where to start with this post. I just found out tonight that a dear friend from church will not live much longer. I don't know the details. . .been trying to find out. Oh William, life is so fragile! I feel like we have had a heavy dose of that lately. I don't know what to write. All I know is that the most comforting thing for me to hear through all of this is, "We're praying for." So, may I, in my small way reach out to the Glem's, who have commented on this blog and been praying for our little family, and say, "You are in our prayers. And we love you."
Thursday, December 16, 2010
Lessons From a Tortoise
Slow and steady wins the race. That's what the tortoise said, right? Well, we are learning first hand how true that is. I would call today a good day. Slow progress, but progress. Less anxiety, but still some. Less struggle in breathing, but still some. Your nurse David said, "I don't want to be negative, just realistic. This is going to be a long road. And the slower you go the better it will be". I can see the truth in that. I don't want any drama and it seems that drama comes when things happen too fast. So, I can do slow. I was talking with Aunt Ali today and she gently brought up Christmas and the possibility that we might be here on Christmas. I haven't wanted to think that far ahead, but the truth is, it's not that far away and you still have a long road. We might still be here. Santa comes in on Christmas morning. We will have Lance and Olivia come here and celebrate. Ali said that Doernbecher's is such a special place that Santa saves it for his last stop. The big kids will think that's pretty cool. Santa will probably freak you out :) It's alright, he used to freak me out too.
I came in pretty late today. I got to go to Olivia's classroom today. She had a little presentation in her class and asked that I come. It felt good to be able to give her a little time. While in the classroom I saw the lyrics of a well known song.
"What a Wonderful World"
I see tress of green, red roses too
I see them bloom for me and you
And I think to myself, what a wonderful world.
I see skies of blue, and clouds of white
The bright blessed day, and dark sacred night
And I think to myself, what a wonderful world.
The colors of the rainbow, so pretty in the sky
Are also on the faces of the people going by
I see friends shaking hands, saying how do you do
They're really saying, I love you.
I hear babies cry, I watch them grow
They'll learn much more than I'll ever know
And I think to myself, what a wonderful world.
Yes I think to myself, what a wonderful world.
I find myself being more appreciative of this world. Kind of hard to explain. Although, this is a terrible and hard thing it makes me appreciate what I do have. I have you. Since we have been in the ICU, some parents haven't been so lucky. Yes, you are sick. Yes, you do have a long road ahead, that won't be easy. Yes, this really sucks. But you are here. We get to go through this awfulness together. I am so grateful for our little family. This will be just a blink in the whole scheme of things. And then we will still be together, forever. It always could be worse. Let's remember that. There is always someone out there that has it worse than us. And just think, maybe you could be the person that helps make it better for someone else. You seem like that kind of kid. Just by smiling at someone or holding the door open or taking the time to listen. You can make someone's burden a little lighter. What a wonderful opportunity. I know I have been a recipient of that kindness. Everyone in this ICU is that way. Smiles, words of encouragement, hugs, care. All of our friends, family, and neighbors offer anything and everything they have to make our burden lighter. And it works. Just offering is enough to make a difference. Just knowing people care makes the burden lift. So, let's pay it forward, little man. Don't be afraid. What have you got to lose? Be bold, be sensitive, be loving. That is what this world needs. Slow down. Remember the tortoise. You can win by taking time to enjoy the ride and learn from the experience.
I love you! I am so proud of the little man that you are. I am so deeply grateful to be your mother. Keep up the good work!
I came in pretty late today. I got to go to Olivia's classroom today. She had a little presentation in her class and asked that I come. It felt good to be able to give her a little time. While in the classroom I saw the lyrics of a well known song.
"What a Wonderful World"
I see tress of green, red roses too
I see them bloom for me and you
And I think to myself, what a wonderful world.
I see skies of blue, and clouds of white
The bright blessed day, and dark sacred night
And I think to myself, what a wonderful world.
The colors of the rainbow, so pretty in the sky
Are also on the faces of the people going by
I see friends shaking hands, saying how do you do
They're really saying, I love you.
I hear babies cry, I watch them grow
They'll learn much more than I'll ever know
And I think to myself, what a wonderful world.
Yes I think to myself, what a wonderful world.
I find myself being more appreciative of this world. Kind of hard to explain. Although, this is a terrible and hard thing it makes me appreciate what I do have. I have you. Since we have been in the ICU, some parents haven't been so lucky. Yes, you are sick. Yes, you do have a long road ahead, that won't be easy. Yes, this really sucks. But you are here. We get to go through this awfulness together. I am so grateful for our little family. This will be just a blink in the whole scheme of things. And then we will still be together, forever. It always could be worse. Let's remember that. There is always someone out there that has it worse than us. And just think, maybe you could be the person that helps make it better for someone else. You seem like that kind of kid. Just by smiling at someone or holding the door open or taking the time to listen. You can make someone's burden a little lighter. What a wonderful opportunity. I know I have been a recipient of that kindness. Everyone in this ICU is that way. Smiles, words of encouragement, hugs, care. All of our friends, family, and neighbors offer anything and everything they have to make our burden lighter. And it works. Just offering is enough to make a difference. Just knowing people care makes the burden lift. So, let's pay it forward, little man. Don't be afraid. What have you got to lose? Be bold, be sensitive, be loving. That is what this world needs. Slow down. Remember the tortoise. You can win by taking time to enjoy the ride and learn from the experience.
I love you! I am so proud of the little man that you are. I am so deeply grateful to be your mother. Keep up the good work!
Wednesday, December 15, 2010
Holding On
Hey buddy. I am exhausted. Not much sleep last night. Worrying about you. They didn't have to put the breathing tube back in. Yeah. But, you do have an in-between breathing tube. It goes up your nose instead of down your throat. It is not so invasive and doesn't give you as much support as the other. But you sound better than you did all day yesterday and last night.
Lots of anxiety today. We found out that you have a virus that is just like the common cold. But in the ICU a common cold can still be scary. So, masks and gowns for everyone but mommy and daddy. And you hate the masks. Your little eyes looked worried almost all day. You cried some too. You don't make any noise when you cry, just tears and a worried look. It is terribly sad. But, the reason you are crying is because doctors and nurses are doing stuff that they need to do to help you get better. The happiest you were today was in the arms of your parents. Daddy got to hold you today too. Very tender moment. And I held you for over 2 hours this morning and another hour tonight. Your heart rate drops to a more normal rate whenever you are being held. Tonight you actually reached up with your arms for me to hold you. So sweet. Because of the anxiety there isn't much down time for Mommy and Daddy. So, we are tired. They said we would be, but you just can't imagine it until your in it :). We would do anything for you though.
Short post tonight. Going home to be with Lance and Olivia. Godspeed, little man. Sweet dreams, little man. Oh, my love will fly to you each night on angels wings. Godspeed. Sweet dreams (from that wonderful Dixie Chicks song). Rest well tonight my little man. Your Mommy love you.
Lots of anxiety today. We found out that you have a virus that is just like the common cold. But in the ICU a common cold can still be scary. So, masks and gowns for everyone but mommy and daddy. And you hate the masks. Your little eyes looked worried almost all day. You cried some too. You don't make any noise when you cry, just tears and a worried look. It is terribly sad. But, the reason you are crying is because doctors and nurses are doing stuff that they need to do to help you get better. The happiest you were today was in the arms of your parents. Daddy got to hold you today too. Very tender moment. And I held you for over 2 hours this morning and another hour tonight. Your heart rate drops to a more normal rate whenever you are being held. Tonight you actually reached up with your arms for me to hold you. So sweet. Because of the anxiety there isn't much down time for Mommy and Daddy. So, we are tired. They said we would be, but you just can't imagine it until your in it :). We would do anything for you though.
Short post tonight. Going home to be with Lance and Olivia. Godspeed, little man. Sweet dreams, little man. Oh, my love will fly to you each night on angels wings. Godspeed. Sweet dreams (from that wonderful Dixie Chicks song). Rest well tonight my little man. Your Mommy love you.
Tuesday, December 14, 2010
So Much For Boredom
I told you boredom is a good thing. It is. No boredom today. Some highs, some lows.
I came in at about 11:30 this morning. Stayed at home and hung out with big kids. Got Olivia on the bus. I even went to one store to look for some Christmas presents. It's really hard to do regular things. The only thing that makes it bearable is if I am doing some regular thing for you or for the big kids. But being in "regular" places like stores is kind of painful. I can't fully describe it. I feel sad for the way things were. The way we used to go shopping together with Lance and Olivia. Running errands. I walked into Fred Meyer and wanted to cry. No one there knew that my little boy is in the ICU. No one knew. It makes me all the more grateful for friends and family that do know. This would be unbearable without that. It also makes me realize that at one time or another we all are bearing some kind of burden and others don't know about it. Makes me want to be a little more patient and kind.
Good news when I came to the hospital. They were going to extibate you(take out your breathing tube), in 15 minutes! Hooray! Overnight you had more fevers. They sent tests to the lab. They thought it might be a viral infection, which here in the ICU means, anyone that enters the room (except Mom and Dad) have to wear a gown and mask and gloves. Mom and Dad were banned from the kitchen:) All precautions to prevent spreading of a possible virus. This should hopefully only last for 24 hours. They had weaned you off some of your sedation meds so that you would be ready to breathe on your own so you were more alert too. The gowns and masks kind of freaked you out. It was a little amuzing to me. I loved seeing emotion on your face. All went well with the extubation. It was sweet to see your little mouth again. To see your teeth and lips. With all the commotion of extubation your artery line (kind of like an IV, but to your artery) came loose. The nurses decided to just take it out. You didn't really need it anymore. They also took out your catheder. Lots of tubes gone. Hooray! The biggest Hooray of the day and past 11 days for that matter was that your mother got to hold you today. Not sure I will ever be able to put into words how I felt. When you got into my arms you reached your weak arms up towards my neck as if you wanted to hold me closer. Heaven.
The rest of the day went a little downhill. You had to work super hard to breathe. The doctors and nurses tried a lot of different things, but mostly you just had to work through it. Right now, as I am writing this post I am sitting at your bedside waiting and hoping you will relax (in an appropriate way) enough to sleep. You are hugging your bear though :) They have talked all night about putting the tube back in. Still up in the air. One step forward, two steps back. How quickly I forget that. When I was holding you somehow I felt like maybe it was over, maybe it would just be a breeze from here. How quickly I forget.
Daddy got a card from his friends at work today. The front of the card said: The most beautiful stones have been tossed by the wind and washed by the water and polished to brilliance by life's strongest storms. You are my most beautiful William! We can do this!
I came in at about 11:30 this morning. Stayed at home and hung out with big kids. Got Olivia on the bus. I even went to one store to look for some Christmas presents. It's really hard to do regular things. The only thing that makes it bearable is if I am doing some regular thing for you or for the big kids. But being in "regular" places like stores is kind of painful. I can't fully describe it. I feel sad for the way things were. The way we used to go shopping together with Lance and Olivia. Running errands. I walked into Fred Meyer and wanted to cry. No one there knew that my little boy is in the ICU. No one knew. It makes me all the more grateful for friends and family that do know. This would be unbearable without that. It also makes me realize that at one time or another we all are bearing some kind of burden and others don't know about it. Makes me want to be a little more patient and kind.
Good news when I came to the hospital. They were going to extibate you(take out your breathing tube), in 15 minutes! Hooray! Overnight you had more fevers. They sent tests to the lab. They thought it might be a viral infection, which here in the ICU means, anyone that enters the room (except Mom and Dad) have to wear a gown and mask and gloves. Mom and Dad were banned from the kitchen:) All precautions to prevent spreading of a possible virus. This should hopefully only last for 24 hours. They had weaned you off some of your sedation meds so that you would be ready to breathe on your own so you were more alert too. The gowns and masks kind of freaked you out. It was a little amuzing to me. I loved seeing emotion on your face. All went well with the extubation. It was sweet to see your little mouth again. To see your teeth and lips. With all the commotion of extubation your artery line (kind of like an IV, but to your artery) came loose. The nurses decided to just take it out. You didn't really need it anymore. They also took out your catheder. Lots of tubes gone. Hooray! The biggest Hooray of the day and past 11 days for that matter was that your mother got to hold you today. Not sure I will ever be able to put into words how I felt. When you got into my arms you reached your weak arms up towards my neck as if you wanted to hold me closer. Heaven.
The rest of the day went a little downhill. You had to work super hard to breathe. The doctors and nurses tried a lot of different things, but mostly you just had to work through it. Right now, as I am writing this post I am sitting at your bedside waiting and hoping you will relax (in an appropriate way) enough to sleep. You are hugging your bear though :) They have talked all night about putting the tube back in. Still up in the air. One step forward, two steps back. How quickly I forget that. When I was holding you somehow I felt like maybe it was over, maybe it would just be a breeze from here. How quickly I forget.
Daddy got a card from his friends at work today. The front of the card said: The most beautiful stones have been tossed by the wind and washed by the water and polished to brilliance by life's strongest storms. You are my most beautiful William! We can do this!
Monday, December 13, 2010
Going, Going, Gone
Good Morning, Little Man. Had a good night last night. You are struggling a little with fevers. It's amazing, when children are healthy and running around at home and a fever strikes everything shuts down and the child is considered pretty sick. Here in the PICU a fever causes questions and action, but they are watching so many other numbers that they don't seem nearly as concerned as I would have thought. You were put on your fourth antibiotic. They said you will probably still be taking at least two of those antibiotics when you go home.
They also have given you a diuretic to make you pee even more and get the swelling down. In the last hour you have peed 300 ml of urine. They usually want you to pee 10 ml an hour, so I think you hit that goal. More like smashed it! It's amazing what your little body will do, even now, with just a little help from the doctors and medicine. Daddy wants to call you the "Barry Bonds of whiz." You remember that somehow Daddy hates the word "pee" and uses the word "whiz" instead.
In the next few days they hope to take your breathing tube out. Once it is out you can be fully weaned off your sedation meds and wake up more. They are also consolidating some of your meds so that you won't need so many tubes and other things poking into you. So we are getting closer to me being able to hold you. Oh my, what will that feel like? I'll let you know after I do :). Once that breathing tube comes out you can have your pacifier in a normal way too. I am sure you will LOVE that.
I am thinking, if everything else goes as planned, that after they monitor you for a few days the next hurdle with be digestion. I have a feeling that will be a slow process. But, I think that step will mean you are on the fast track home, so I think I can be patient.
You are more awake today. Before today you would only open your eyes for a second. Today you keep them open for a few seconds. You even track people as they walk around your bed. Your eyes seem glassy and unfocused, but it is still good to see them.
We have been in the hospital for 10 days. I am tired, but still full of hope. I am sad and lonely for you, but remember you and your goodness and sweetness. I don't know what the future will bring and how long you will need to be here, but I do know we will be home someday all together again.
I miss you, you little turkey.
They also have given you a diuretic to make you pee even more and get the swelling down. In the last hour you have peed 300 ml of urine. They usually want you to pee 10 ml an hour, so I think you hit that goal. More like smashed it! It's amazing what your little body will do, even now, with just a little help from the doctors and medicine. Daddy wants to call you the "Barry Bonds of whiz." You remember that somehow Daddy hates the word "pee" and uses the word "whiz" instead.
In the next few days they hope to take your breathing tube out. Once it is out you can be fully weaned off your sedation meds and wake up more. They are also consolidating some of your meds so that you won't need so many tubes and other things poking into you. So we are getting closer to me being able to hold you. Oh my, what will that feel like? I'll let you know after I do :). Once that breathing tube comes out you can have your pacifier in a normal way too. I am sure you will LOVE that.
I am thinking, if everything else goes as planned, that after they monitor you for a few days the next hurdle with be digestion. I have a feeling that will be a slow process. But, I think that step will mean you are on the fast track home, so I think I can be patient.
You are more awake today. Before today you would only open your eyes for a second. Today you keep them open for a few seconds. You even track people as they walk around your bed. Your eyes seem glassy and unfocused, but it is still good to see them.
We have been in the hospital for 10 days. I am tired, but still full of hope. I am sad and lonely for you, but remember you and your goodness and sweetness. I don't know what the future will bring and how long you will need to be here, but I do know we will be home someday all together again.
I miss you, you little turkey.
Sunday, December 12, 2010
Boredom is a Good Thing
This weekend has been boring. Who would have thought I would be looking for boredom, but I am. It is a welcome sight. This reprieve, I am convinced, is because of all the faith and prayers from your loving friends and family.
The one big thing the nurses and doctors have been dealing with is your "itchiness." You are looking like you have ants in your pants :). They say it is a natural reaction to some of the pain meds you are on. I am sorry. You look terribly uncomfortable. But, in a way it is a relief to see you doing normal little boy things. I would much rather have you be itchy than have no blood pressure. Perspective, right? Our family and, it seems, everyone that knows us has had a huge dose of perspective since you came here. It is amazing the things I don't care about right now. You do know I love having control over things? I thrive on structure and predictability. Don't have much of that right now. But, I don't really care. All those little things that used to get under my skin, slide right off my back. Some days I would get so worked up about whether or not you were sleeping enough. Are you kidding? Today, I just want to see you smile. I am sure when you are all better and home and running around and climbing up on the dining room table or pounding on the keys of this laptop I will probably be worried about your sleep again. But, I hope that through this terrible experience I can come out on the other side with a little more continued perspective. I hope I won't get so worked up if dinner doesn't turn out, or if you won't eat the dinner I cooked for you. I hope I can see my life for what it has to offer and slow down and enjoy it a little more. I don't think I will ever be able to look at you the same again. I think I will forever more see in you hope, faith, and the tender mercies of our Father in Heaven.
I have also, this weekend, been struggling more with feeling down and depressed. The initial adrenaline has worn off. Daddy and I are not constantly at your bedside thinking that your heart might stop or your lungs collapse. Although we are still deeply concerned about your health and recovery, we are finding ourselves with more time to miss our "old" life. We just want you back. And we miss Olivia and Lance. It feels like we are getting past the survival mode and moving into the recovery mode. It's a marathon, not a sprint. You are getting better, but you still have a long way to go. We are here, little man, waiting and praying and trying to do whatever we can to help you. Keep up your hard work. Slow and steady wins the race :).
ILU!
The one big thing the nurses and doctors have been dealing with is your "itchiness." You are looking like you have ants in your pants :). They say it is a natural reaction to some of the pain meds you are on. I am sorry. You look terribly uncomfortable. But, in a way it is a relief to see you doing normal little boy things. I would much rather have you be itchy than have no blood pressure. Perspective, right? Our family and, it seems, everyone that knows us has had a huge dose of perspective since you came here. It is amazing the things I don't care about right now. You do know I love having control over things? I thrive on structure and predictability. Don't have much of that right now. But, I don't really care. All those little things that used to get under my skin, slide right off my back. Some days I would get so worked up about whether or not you were sleeping enough. Are you kidding? Today, I just want to see you smile. I am sure when you are all better and home and running around and climbing up on the dining room table or pounding on the keys of this laptop I will probably be worried about your sleep again. But, I hope that through this terrible experience I can come out on the other side with a little more continued perspective. I hope I won't get so worked up if dinner doesn't turn out, or if you won't eat the dinner I cooked for you. I hope I can see my life for what it has to offer and slow down and enjoy it a little more. I don't think I will ever be able to look at you the same again. I think I will forever more see in you hope, faith, and the tender mercies of our Father in Heaven.
I have also, this weekend, been struggling more with feeling down and depressed. The initial adrenaline has worn off. Daddy and I are not constantly at your bedside thinking that your heart might stop or your lungs collapse. Although we are still deeply concerned about your health and recovery, we are finding ourselves with more time to miss our "old" life. We just want you back. And we miss Olivia and Lance. It feels like we are getting past the survival mode and moving into the recovery mode. It's a marathon, not a sprint. You are getting better, but you still have a long way to go. We are here, little man, waiting and praying and trying to do whatever we can to help you. Keep up your hard work. Slow and steady wins the race :).
ILU!
Friday, December 10, 2010
The Boy You Once Were
Surgery today. Went well. It's interesting. Every time I see your surgeons I have this overwhelming feeling of gratitude. I am terribly grateful for your doctors and nurses. The love and care and concern they show you is unlike anything I have ever seen. Today, before you went to surgery your nurse, Stephanie, was giving the anesthesiologists all the info they needed to take care of you in surgery. Watching her was like watching a little mother. It was like she was your mother and she was sending you away and needed to make sure those taking care of her child were fully capable. It didn't bother me. It was a wonderful. I truly believe that when you are in her care you mean to world to her and she would do just about anything to keep you safe and healthy. I have a new found respect and understanding of the health care profession. As for your surgeons. . .I have a tender spot for them. They saved you! And they continue to do things for you to heal you and put you back together to be the boy you once were (with some added scars and experience). I think they love you. On whatever level. I see their concern for you and their need to "fix" you. One of your resident surgeons, Nate (the one that we first spoke with last Friday night, and has been helping with all of your surgeries), came back tonight and watched your numbers, made suggestions, fixed your tube that is sucking out the contents of your tummy. Showed some extra care and concern. They are doing a darn good job. At least, from my limited understanding. So, here is what they said about the surgery:
I love you, little man!
- They put your belly back together. They only sewed up your fascia. It goes skin, fat, fascia, muscle, tummy. By leaving your skin and fat open it allows the wound to heal from the bottom up and lessens the risk of infection. If they were to close you all the way they were pretty sure you would develop an infection under the skin. It should take several weeks for it to heal. They didn't see any signs of infection or dead tissue. So, they don't plan on you having any more surgery for another 6-8 weeks. Then you will come back and have another surgery to put your small intestine back together and probably get your appendix out. The surgeons feel that it would be good to take this out because all it could do is confuse us to your symptoms. And, if at some point, you would need to have it taken out it would only further damage the areas they have been working on this week. You will have to stay in the hospital for another 5-7 days, after your future surgery, so they can monitor your digestive process.
- They also took about 4 oz of fluid off your right lung. There was a sack of fluid between your lung and rib cage that was causing pressure and making it harder to breathe. They removed it with ease.
I love you, little man!
Thursday, December 9, 2010
Pacifiers and Pee
Ha, ha. I am laughing at myself for that title. I can't help it though. Laughing is good. Those two words are a good theme for yesterday. Oh, yesterday. It was a good day. The best day so far. I needed that. I am sure you REALLY needed that. You had your nurse Diana. Diana was here on Saturday, your first full day here in the PICU and then back yesterday. She not only is the best at what she does, but she also is really good at bringing an additional calming presence to the room. She is very connected to you and watches you and knows what you need. So overall, it was a calm day.
Half way through the day we noticed with your new arousal that you were kind of chewing on the tube that goes down your throat and provides assistance in your breathing. Well, you are a pacifier man. You love your pacifiers. You call them a "pa," or sometimes a "pas." In the past few months you have started chewing on your pacifiers. You walk around the house and kind of roll it around in your mouth and chew and suck and chew and suck. I mentioned this to Diana and she immediately went and got a pacifier for you. You have had it in your mouth ever since. I took a picture (I am working on getting these onto the blog). Since you also have your breathing tube in your mouth you can't really suck, but you chew. It's cute. People walk by the room and just laugh.
You are more active. Moving around, opening your eyes, briefly. The nurses assure us that you are still heavily sedated, but the activity is good. The activity is good for your parents spirits too. That contact with you has lifted our spirits. Olivia and Lance were thrilled too. I told Grandma, over the phone, that you opened your eyes. She told Olivia and Lance and I then heard cheering in the background. When they came later yesterday to see you they were thrilled to see your movement. When you heard their voices you started stirring and lifting your hands and trying to open your eyes. It was awesome. Lance was saying goodnight to you and you opened your eyes a little. He said "William opened his eyes again!" I then said it was because of Lance. Lance then said "William opened his eyes for me!"
You had a good night too. Some blood work that came back said your cortisol levels were low, which is common in people that go into shock. Cortisol helps you to maintain your blood pressure. So, you are getting hydrocortizone and hopefully that will help you be able to slowing get off your blood pressure meds. You were suppose to go to surgery today, but the surgeons decided this morning that they would like to give you another day to rest and let you body regulate even more. So, surgery tomorrow.
Oh yeah, the "pee" part of the story. So the past 4 or 5 days you have increasingly become more and more swollen and puffy. Tuesday was probably the worst of it. All day yesterday you were like the incredible shrinking boy. You look like you today and that is because in the last 24 hours you have almost peed your body weight. . . 7 kilos. Way to go, little dude! Diana calls your pee "liquid gold."
Lots and lots of good the past few days. I am geared up for set backs in the future, but this time has given me renewed hope and strength. I am convinced that these past few "good" days are a result of all the prayers that have been offered on your behalf. I am so grateful for the outpouring of support and love. I know I have said it before, but I can literally feel it. This room is filled with the strength and love of Heavenly Father. He is aware of you and strengthening you, loving you, and allowing you to pass through this to make you stronger. You know, often times we think that when something bad happens to us that it isn't fair or we question what we did to deserve this. I don't think that, not for one minute. Life can't be wonderful unless it is also sometimes horrible. I have never felt as desperate or scared as I did last Friday night. But I don't think I have ever felt as loved and supported. I feel a closer connection to those I love, including you. And I feel closer to our Father in Heaven. I would have never chosen this experience, but I am deeply grateful for the blessings that have come because it.
I love you, my little darling. Keep up the good work :)
Half way through the day we noticed with your new arousal that you were kind of chewing on the tube that goes down your throat and provides assistance in your breathing. Well, you are a pacifier man. You love your pacifiers. You call them a "pa," or sometimes a "pas." In the past few months you have started chewing on your pacifiers. You walk around the house and kind of roll it around in your mouth and chew and suck and chew and suck. I mentioned this to Diana and she immediately went and got a pacifier for you. You have had it in your mouth ever since. I took a picture (I am working on getting these onto the blog). Since you also have your breathing tube in your mouth you can't really suck, but you chew. It's cute. People walk by the room and just laugh.
You are more active. Moving around, opening your eyes, briefly. The nurses assure us that you are still heavily sedated, but the activity is good. The activity is good for your parents spirits too. That contact with you has lifted our spirits. Olivia and Lance were thrilled too. I told Grandma, over the phone, that you opened your eyes. She told Olivia and Lance and I then heard cheering in the background. When they came later yesterday to see you they were thrilled to see your movement. When you heard their voices you started stirring and lifting your hands and trying to open your eyes. It was awesome. Lance was saying goodnight to you and you opened your eyes a little. He said "William opened his eyes again!" I then said it was because of Lance. Lance then said "William opened his eyes for me!"
You had a good night too. Some blood work that came back said your cortisol levels were low, which is common in people that go into shock. Cortisol helps you to maintain your blood pressure. So, you are getting hydrocortizone and hopefully that will help you be able to slowing get off your blood pressure meds. You were suppose to go to surgery today, but the surgeons decided this morning that they would like to give you another day to rest and let you body regulate even more. So, surgery tomorrow.
Oh yeah, the "pee" part of the story. So the past 4 or 5 days you have increasingly become more and more swollen and puffy. Tuesday was probably the worst of it. All day yesterday you were like the incredible shrinking boy. You look like you today and that is because in the last 24 hours you have almost peed your body weight. . . 7 kilos. Way to go, little dude! Diana calls your pee "liquid gold."
Lots and lots of good the past few days. I am geared up for set backs in the future, but this time has given me renewed hope and strength. I am convinced that these past few "good" days are a result of all the prayers that have been offered on your behalf. I am so grateful for the outpouring of support and love. I know I have said it before, but I can literally feel it. This room is filled with the strength and love of Heavenly Father. He is aware of you and strengthening you, loving you, and allowing you to pass through this to make you stronger. You know, often times we think that when something bad happens to us that it isn't fair or we question what we did to deserve this. I don't think that, not for one minute. Life can't be wonderful unless it is also sometimes horrible. I have never felt as desperate or scared as I did last Friday night. But I don't think I have ever felt as loved and supported. I feel a closer connection to those I love, including you. And I feel closer to our Father in Heaven. I would have never chosen this experience, but I am deeply grateful for the blessings that have come because it.
I love you, my little darling. Keep up the good work :)
Wednesday, December 8, 2010
Wednesday, Dec. 8th
Liesel's 5th Birthday today. Happy Birthday, you little beauty!
A lot has happened since my last post. That's the name of the game in here though.
So, you were suppose to have surgery yesterday. Didn't happen. You wanna know why? Your little heart decided to stop for a couple of seconds! But you picked it back up on your own and freaked out everyone on the 8th floor in the process. Including your parents. They rest of the day your heart rate was low and so the surgical team decided it wouldn't be smart to put your little body through anything more. They did take you to the OR though. They re-dressed your belly wound and checked you out without being invasive and didn't see any more evidence of infection. They rescheduled you for Thursday surgery. You were put on some more aggressive antibiotics to try to continue clearing out infection.
All the "smarties" as the nurses call them or doctors huddled together to try to figure out why your heart would do what it did. No real answers.
So the day and night was filled with some worry and wonder and hopefully rest for you. I think you probably looked the most bloated and tight today. You looked like a marshmallow man.
I slept at home last night and left here about 7pm to take big kids home and get them ready for bed and then up in the morning. I didn't make it back here until 11:30 this morning. Those 16 hours did wonders for you kid! Your bloating and swelling has gone down a little. And another reason for cheer. . .you opened your eyes!!! Did you hear me yesterday? I think you must have, my little darling. I told you that you are my angel. You are helping me, even when you are in the depths of sickness, you are trying to comfort your Mommy! Thank you! Your hands and feet and lips and eyebrows are all wiggling. You are furrowing your brow like you used to and chewing on your air pipe. It has been such a joy. Yesterday was definitely a valley and today a peak. They assure us that you are still heavily medicated though. You won't remember any of this and you don't feel any pain or discomfort. So it works well. We get to see some life in you, but you are still comfortable. Good.
So, my little man. Keep it up. We are praying, we are waiting, we are loving you!
A lot has happened since my last post. That's the name of the game in here though.
So, you were suppose to have surgery yesterday. Didn't happen. You wanna know why? Your little heart decided to stop for a couple of seconds! But you picked it back up on your own and freaked out everyone on the 8th floor in the process. Including your parents. They rest of the day your heart rate was low and so the surgical team decided it wouldn't be smart to put your little body through anything more. They did take you to the OR though. They re-dressed your belly wound and checked you out without being invasive and didn't see any more evidence of infection. They rescheduled you for Thursday surgery. You were put on some more aggressive antibiotics to try to continue clearing out infection.
All the "smarties" as the nurses call them or doctors huddled together to try to figure out why your heart would do what it did. No real answers.
So the day and night was filled with some worry and wonder and hopefully rest for you. I think you probably looked the most bloated and tight today. You looked like a marshmallow man.
I slept at home last night and left here about 7pm to take big kids home and get them ready for bed and then up in the morning. I didn't make it back here until 11:30 this morning. Those 16 hours did wonders for you kid! Your bloating and swelling has gone down a little. And another reason for cheer. . .you opened your eyes!!! Did you hear me yesterday? I think you must have, my little darling. I told you that you are my angel. You are helping me, even when you are in the depths of sickness, you are trying to comfort your Mommy! Thank you! Your hands and feet and lips and eyebrows are all wiggling. You are furrowing your brow like you used to and chewing on your air pipe. It has been such a joy. Yesterday was definitely a valley and today a peak. They assure us that you are still heavily medicated though. You won't remember any of this and you don't feel any pain or discomfort. So it works well. We get to see some life in you, but you are still comfortable. Good.
So, my little man. Keep it up. We are praying, we are waiting, we are loving you!
Tuesday, December 7, 2010
Keep Moving Forward
Keep Moving Forward. I found myself repeating that in my mind yesterday. It is what all the doctors and nurses are looking for, and me too. Progress. Hope. You getting better. I had a vision of you being all better and I can't fully describe the feelings I imagined I would feel. Jubilation? Relief? Immense gratitude. So that is where we are moving forward to.
I stayed at the hospital last night, while Daddy went home to sleep. Not much sleep. But I asked a lot of questions and I feel like I am kind of getting it. I watch your "numbers" on the screen and I know where you should be. Okay, so here are some things I heard about you and all this.
I stayed at the hospital last night, while Daddy went home to sleep. Not much sleep. But I asked a lot of questions and I feel like I am kind of getting it. I watch your "numbers" on the screen and I know where you should be. Okay, so here are some things I heard about you and all this.
- the surgeon said he has never seen this sort of thing before. He is an experienced surgeon and is perplexed by you :) Way to be different! And they still don't know why your small intestine died and perforated.
- I looked up small intestine on Wikipedia and here is some more info:
The small intestine is divided into three structural parts: ..
Friday they removed 10 cm of your Ileum. On Sunday they removed about 8 cm of your uppermost jejunum. As you can see, you have plenty of both of those to spare. They have no worries about you having enough intestine.- you are still considered acutely ill. But you are doing all that they expect you to do.
Monday, December 6, 2010
Olivia
Olivia went to school today. I think she was lonely for you. But, her teacher emailed me and told me a little story that let me know she is well taken care of. Here is what she said:
She seemed mostly ok today, but definitely had some sad moments. She told the class what was going on and then asked kids if they would be extra nice to her today. She said she wanted to make sure she had kids to play with at recess, and they all raised their hands to say they would be happy to play with her. So she seemed well taken care of by her peers.
I think that is quite possibly the sweetest thing I have ever heard. Sweet children! If only we could all stay that honest and loving. Olivia's willingness to ask for help and her classmates willingness to offer help. Isn't that how it should be, with all of us? Remember that, I need to try too. It's okay to ask for help, especially when all the help you need is a little love and support. You may think someday that I give you too much, but too bad. I am your mother and will love you and support you forever. And I am planning on that forever to be a really long time :)
Also, let this be a reminder to you, litte Wi-wi-wum, that your Olivia loves you!
She seemed mostly ok today, but definitely had some sad moments. She told the class what was going on and then asked kids if they would be extra nice to her today. She said she wanted to make sure she had kids to play with at recess, and they all raised their hands to say they would be happy to play with her. So she seemed well taken care of by her peers.
I think that is quite possibly the sweetest thing I have ever heard. Sweet children! If only we could all stay that honest and loving. Olivia's willingness to ask for help and her classmates willingness to offer help. Isn't that how it should be, with all of us? Remember that, I need to try too. It's okay to ask for help, especially when all the help you need is a little love and support. You may think someday that I give you too much, but too bad. I am your mother and will love you and support you forever. And I am planning on that forever to be a really long time :)
Also, let this be a reminder to you, litte Wi-wi-wum, that your Olivia loves you!
Monday, December 6th
Daddy slept here last night, while I went home with the big kids and Grandma. It was good to be home and iron out some things. I missed you. I know you are in good hands and I couldn't have left you if Daddy wasn't here. I slept for 8.5 hours though. That is good.
Got Olivia on the bus. She misses you and wishes she could come see you after school, but with traffic I don't think it's a good idea. She sent kisses and hugs with me. . so did Lance and Grandma.
When I got to the hospital today you were doing okay. I actually heard the word "improvement" today. They took you off one of your blood pressure meds, but may possibly need to go back on. You are a little more alert. You have moved your hands and lip. Not much, but I saw some life in you. . .felt good.
I feel an overwhelming sense of gratitude today. All the faces of those that have helped us the past few days keep going through my mind and tears immediately follow. I think of the EMT's that brought you to the hospital. They were the closest to angels that I have ever met in my life. All the doctors, surgeons, nurses that rushed and helped you on Friday night. I am convinced that they were tied to you in a way that can only be described as spiritual. They knew you and your needs. . and saved you. How can I sufficiently thank someone for that?
You are my angel. You always have been. You get better. I love you, little booger :)
Got Olivia on the bus. She misses you and wishes she could come see you after school, but with traffic I don't think it's a good idea. She sent kisses and hugs with me. . so did Lance and Grandma.
When I got to the hospital today you were doing okay. I actually heard the word "improvement" today. They took you off one of your blood pressure meds, but may possibly need to go back on. You are a little more alert. You have moved your hands and lip. Not much, but I saw some life in you. . .felt good.
I feel an overwhelming sense of gratitude today. All the faces of those that have helped us the past few days keep going through my mind and tears immediately follow. I think of the EMT's that brought you to the hospital. They were the closest to angels that I have ever met in my life. All the doctors, surgeons, nurses that rushed and helped you on Friday night. I am convinced that they were tied to you in a way that can only be described as spiritual. They knew you and your needs. . and saved you. How can I sufficiently thank someone for that?
You are my angel. You always have been. You get better. I love you, little booger :)
Sunday, December 5th
Grandpa Hale's birthday today. Had a few hiccups last night. They say you will take a few steps forward and then one step back. But I am trying not to get discouraged. I feel your strength. Even the nurse said she could feel your strong spirit and will to survive. How fitting your name is? I love the name William. It took us a while to figure out your name, but when I saw William, I fell in love with it. And Will was the natural nickname. You've got some will. Fight, Fight :)
They are pumping you with "ridiculous" amounts of fluids to help your ab heal. You are all puffy. Your eyelids and, funny as it seems, your scrotum are the most swollen. But your whole body is filled to the max with fluid to help you heal. In several days you will pee it all out. Some of that fluid finds it's way into your lungs. The nurses are on top of it, and suction you several time a day.
You went back into surgery today. They found another section of intestine that had died. They aren't worried about this. They don't think it will happen again, but if it does they say you will definitely let us know. They removed it and also gave you an ileostomy which will allow your intestines to heal. There is too much risk of the intestine tearing if they put it back together now. You will have this for 6-8 weeks. The also took off your bag on your ab. Now you are still open but have a lot of dressings . They hope to sew you up on Tuesday.
OJ and LB came again. Played, ate, went on little adventures with Sharleny. Aunt Sharlene has been wonderful. Uncle Verl cooks delicious food and Sharlene brings it here to us and then monitors you (she's an RN) and the nurses :) and us :)
Lance was playing with Grandma today and Grandma said "What do you want to do next?" Lance said, "I can say a prayer." And he did. You are so loved. We have had an outpouring of emails and calls. And I can feel the strength from our loved ones prayers.
Little man, I love you!
They are pumping you with "ridiculous" amounts of fluids to help your ab heal. You are all puffy. Your eyelids and, funny as it seems, your scrotum are the most swollen. But your whole body is filled to the max with fluid to help you heal. In several days you will pee it all out. Some of that fluid finds it's way into your lungs. The nurses are on top of it, and suction you several time a day.
You went back into surgery today. They found another section of intestine that had died. They aren't worried about this. They don't think it will happen again, but if it does they say you will definitely let us know. They removed it and also gave you an ileostomy which will allow your intestines to heal. There is too much risk of the intestine tearing if they put it back together now. You will have this for 6-8 weeks. The also took off your bag on your ab. Now you are still open but have a lot of dressings . They hope to sew you up on Tuesday.
OJ and LB came again. Played, ate, went on little adventures with Sharleny. Aunt Sharlene has been wonderful. Uncle Verl cooks delicious food and Sharlene brings it here to us and then monitors you (she's an RN) and the nurses :) and us :)
Lance was playing with Grandma today and Grandma said "What do you want to do next?" Lance said, "I can say a prayer." And he did. You are so loved. We have had an outpouring of emails and calls. And I can feel the strength from our loved ones prayers.
Little man, I love you!
Saturday, December 4th
Day filled with a lot of information. We were told this is a marathon, not a sprint. You will be here for 2 to 4 weeks. They planned for another surgery to clean out your ab again and check everything out again. Not ready for that today. Grandma arrived at 4am and is with Lance and Olivia. They came to visit you. There is a social worker here, Kim, that talked to OJ(olivia june) and LB(lawrence benson) and prepped them to see you all tubed up. They did so well. They loved being able to see you and love you. Later when Olivia went home she said to Grandma "William is lucky, he gets to sleep in a room with a really nice view. All I see when I look out my window is bushes." What a sweetie! You do have a good view. This hospital is amazing. Pretty much built up on a hill. Looking out your window we see evergreens and ivy and hills and there is a Christmas tree with lights.
We are settling in for the long haul. Trying not to think about how we will do it, but that it will be done. When siblings were here they watched Meet the Robinsons. Such a sweet movie. Of course, I saw a parallel to all this. Lewis, the main character, is an orphan. All is wants is to meet his mother. He meets someone from the future that shows him what his life will become if he continues to work hard and "keep moving forward" instead of dwelling on the past. He will have a wonderful life and a large, loving family. Lewis wants to stay in the future, but he must return and walk the road that will lead him to his happy future. I find myself saying "keep moving forward." They say once you pull out of this there is only a 10 percent chance that you will ever have issues again. You will be happy and healthy and get on with your life. I know your future looks wonderful. I know we will get to that future. I just don't know how. But I have faith that it will all work out.
I love you, little dude! Be strong and know we love you.
We are settling in for the long haul. Trying not to think about how we will do it, but that it will be done. When siblings were here they watched Meet the Robinsons. Such a sweet movie. Of course, I saw a parallel to all this. Lewis, the main character, is an orphan. All is wants is to meet his mother. He meets someone from the future that shows him what his life will become if he continues to work hard and "keep moving forward" instead of dwelling on the past. He will have a wonderful life and a large, loving family. Lewis wants to stay in the future, but he must return and walk the road that will lead him to his happy future. I find myself saying "keep moving forward." They say once you pull out of this there is only a 10 percent chance that you will ever have issues again. You will be happy and healthy and get on with your life. I know your future looks wonderful. I know we will get to that future. I just don't know how. But I have faith that it will all work out.
I love you, little dude! Be strong and know we love you.
Another Life
Friday, December 3rd
You have been sick all week. It seemed like the flu. You were a trooper. Just slept and laid around. Took you to the doctor on Wednesday, everything checked out. Early this morning you seemed to be improving. Held down a little milk and smoothie.
Around 5pm things changed fast. You threw up several times and your belly became extremely distended, like a balloon. Your countenance changed. Olivia said "Mommy, William doesn't look like William. He looks like a different person." I took you to urgent care and found out at the door that there was no urgent care at our doctor's office. Put you back in the car. Your eyes were rolling back. After talking with Daddy and Grandma I rushed you to the ER.
The moment the front desk attendants saw you they rushed you back to an exam room. I sat down and watched as 14 doctors and nurses and whoever else was available went to work. As I sat there counting I quickly realized this was bad, really bad. They couldn't get an IV in you. They later said you were "locked-up." You were in shock and all the blood in your body went to your torso to protect yourself. So they drilled a hole in each of your shin bones to get an IV directly into your bone. Crazy huh?
The rest is a pretty big blur. They told me they were going to have to transfer you to Doernbecher's Children's Hospital and that I needed to call Dad. Maria and Victoria rushed over to the house to care for Olivia and Lance so that Daddy could come. Grandma packed her things and started the 3 hour drive down. And you rode in an ambulance with the Panda Team (and me) to the hospital.
At the hospital the surgeons said you needed to go into emergency surgery. They had taken an x-ray and determined that you had a blocked intestine. They had theories, but no time to really investigate without just going in and looking. Your belly was so distended that it was cutting off the blood flow to your lower body.
The surgeon and anesthesiologist spoke with us about the procedure and the risks. We were told that there was a real possibility that you would not survive. Daddy and I tried to be strong and have faith. Daddy gave you a blessing and we felt confident that we would see you when the surgery was over.
You did well in surgery. They found a portion of your small intestine (10 cm) that was dead. They don't know how, but they guessed that possibly some sort of "band" had formed that strangled your intestine and it died. When it died the intestine broke open and the contents of your intestine spilled into your abdomen. Those contents burned the inside of you. In the surgery they removed the dead portion and cleaned out your abdomen. There is no definite cause of these "bands" and they said we did everything right. It happens quickly and without a lot of warning. They left your abdomen open with a sort of upside down bag, called a "silo," over the wound to protect it. They couldn't put you back together for fear that the pressure would build again.
You were considered to be in "septic shock," in critical condition, and near death. They gave you a breathing tube. Put you on blood pressure meds (pressures), three antibiotics, pain and anxiety meds. You required blood during surgery and they also gave you plasma.
Daddy and I slept about 2 hours on Friday night. Isn't it amazing how life can be flipped upside down in a heartbeat. I look back on Friday before 5pm and it truly feels like Another Life.
You have been sick all week. It seemed like the flu. You were a trooper. Just slept and laid around. Took you to the doctor on Wednesday, everything checked out. Early this morning you seemed to be improving. Held down a little milk and smoothie.
Around 5pm things changed fast. You threw up several times and your belly became extremely distended, like a balloon. Your countenance changed. Olivia said "Mommy, William doesn't look like William. He looks like a different person." I took you to urgent care and found out at the door that there was no urgent care at our doctor's office. Put you back in the car. Your eyes were rolling back. After talking with Daddy and Grandma I rushed you to the ER.
The moment the front desk attendants saw you they rushed you back to an exam room. I sat down and watched as 14 doctors and nurses and whoever else was available went to work. As I sat there counting I quickly realized this was bad, really bad. They couldn't get an IV in you. They later said you were "locked-up." You were in shock and all the blood in your body went to your torso to protect yourself. So they drilled a hole in each of your shin bones to get an IV directly into your bone. Crazy huh?
The rest is a pretty big blur. They told me they were going to have to transfer you to Doernbecher's Children's Hospital and that I needed to call Dad. Maria and Victoria rushed over to the house to care for Olivia and Lance so that Daddy could come. Grandma packed her things and started the 3 hour drive down. And you rode in an ambulance with the Panda Team (and me) to the hospital.
At the hospital the surgeons said you needed to go into emergency surgery. They had taken an x-ray and determined that you had a blocked intestine. They had theories, but no time to really investigate without just going in and looking. Your belly was so distended that it was cutting off the blood flow to your lower body.
The surgeon and anesthesiologist spoke with us about the procedure and the risks. We were told that there was a real possibility that you would not survive. Daddy and I tried to be strong and have faith. Daddy gave you a blessing and we felt confident that we would see you when the surgery was over.
You did well in surgery. They found a portion of your small intestine (10 cm) that was dead. They don't know how, but they guessed that possibly some sort of "band" had formed that strangled your intestine and it died. When it died the intestine broke open and the contents of your intestine spilled into your abdomen. Those contents burned the inside of you. In the surgery they removed the dead portion and cleaned out your abdomen. There is no definite cause of these "bands" and they said we did everything right. It happens quickly and without a lot of warning. They left your abdomen open with a sort of upside down bag, called a "silo," over the wound to protect it. They couldn't put you back together for fear that the pressure would build again.
You were considered to be in "septic shock," in critical condition, and near death. They gave you a breathing tube. Put you on blood pressure meds (pressures), three antibiotics, pain and anxiety meds. You required blood during surgery and they also gave you plasma.
Daddy and I slept about 2 hours on Friday night. Isn't it amazing how life can be flipped upside down in a heartbeat. I look back on Friday before 5pm and it truly feels like Another Life.
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