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 :)
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