Not quite sure where to begin. It has been a while since I have posted and a lot has happened. And I can't process it all right now. I am hoping that this post will help. William, this blog has been a really anchor for me. It has really helped me to deal with everything and let go of things and understand things and communicate things. I plan on this being my last post. It is a little surreal for me. The end. The completion of something so terrible, so wonderful, so life altering. And the beginning of the rest of our lives. Our "happily ever after." I thought of the title to this last post a month or so ago. It made me smile at the time. But know I feel a little differently about it. These last few weeks have been eye-opening for me. Let me explain. . .
Since we have been home from your last surgery everything has been absolutely wonderful. Even the hard stuff seems bearable. Just regular family craziness. But I have been able to step back and see it for what it is, temporary. I have been able to recognize the tiny, insignificant stuff for what it truly is. Which, for a mother that stays at home all day, can be very liberating. You have been eating well, playing well, sleeping well, healing well. You took your first bath in 3 months. I promise, I have been sponge bathing you all this time. But now you can sit in the shallow water (it needs to be shallow so that your wound doesn't soak in all that bacteria filled water) and play and splash. You returned to your old room with Lance (you have been sleeping in the port-a-crib in Mommy and Daddy's room). And you are making up for lost time by filling your diaper at least two times a day, sometimes up to four times a day :) And best of all, your little, funny, sweet personality is back. You laugh, hug, kiss, spit, scream, tease, and play all day long. You are back. We went for your follow-up visit yesterday. You haven't gained any weight so they want to see you again in a month, but they aren't worried. You look good and act like you are good. All checked out. We don't even have to do any more dressing changes for your ostomy wound. Nothing is left. I haven't done one single thing today that has to do with your illness. And I don't plan on doing another thing ever again.
I remember way back in December thinking of this day. Oh how I prayed it would come. And it did. And I thank my Heavenly Father every day and multiple times a day that it is here. It is a miracle. So, it came as quite a shock to me last week when I realized that I didn't feel happy. I felt "blah." I remember one of the social workers I spoke with at the hospital telling me that feeling "blah" can sometimes mean we are depressed. How can that be? Why do I feel that way now? You are better. Life is better. Everything is supposed to be the way I dreamed it would be. But it's not. I have talked with Daddy and some others about all this and thought about it a lot myself. I realize that while you were sick I held a lot in. I had to be strong for you and for Lance and Olivia. And I had to be strong for me. I couldn't lose it. If I lost it then I would be facing the reality of what was really happening. I think I understood what was happening, it just felt like I was standing on a cliff watching my son almost die and then ever so slowly fight to live. I couldn't jump off the cliff. What good would that do? So, I watched. I kept my distance and dealt with what I facing the best way I knew how. And now that you are better I find myself jumping off that cliff, wanting a closer look. I find myself thinking, "Did that really happen to us?" Before I started this post I read my very first post and watched the slideshow. I lost it. Grief doesn't just go away once the reason for it goes away. I thought it would. But I realize that there are so many different layers to our grief and you have to deal with each one. I was talking with a friend who has dealt with a similar experience in her life and she said that sometimes you need to let yourself "leak" a little. Sometimes you just need to grieve, cry, and be sad for what has happened. I wanted to get on with our life. To start our "happily ever after." But I realize now that our "happily ever after" isn't always going to be easy. I have to be patient. Patient with you, with Lance, with Olivia, with Daddy, and with myself. Our little tragic story is real. Most people have a little tragic story and we are all just plugging away trying to deal with it the best way we know how. I love our little tragic story, because we were all together in it, and we all made it out together. And we all get to heal and grow and learn together. So that is what we will do. Just keep plugging away. Doing those things that will help us and being patient when the help doesn't seem to work fast enough. So, look back and see how many people love you and care for you and made sacrifices for you and know that this world is good and there is always HOPE.
I guess this is goodbye. It's really hard for me to say goodbye. It's hard for me to comprehend that this part of our journey is over. I don't understand why it is hard to let go. But, writing to you has meant so much to me. It kept me connected to my little boy for those weeks when I had no other way of communicating with you. It helped me reach out to you and to everyone that loves you and was so very concerned for you. In a small way, it saved me. And I am sure it will save me over and over again as I read and re-read. So much has happened. So much good has come for your "pause" in life. I love you. I am so very proud of you. I hope that more than anything you can feel that. I hope that my words will forever be in your heart and mind. William, always remember that your Mommy loves you.
Thursday, March 31, 2011
Thursday, March 10, 2011
William Unplugged
We're done, William. We get to go home. . .forever. No more hospital stays. No more tubes. All done. I can't believe it. I am thrilled, relieved, so very grateful. And you are doing awesome. The surgeon stopped by today and said, "He looks great. Do you want to go home tomorrow or tonight?" Daddy and I were speechless. You still hadn't even pooped. Daddy asked the surgeon if he was concerned that you hadn't pooped yet. Dr. Harrison said that he wasn't. He said it will happen, it may just take more time. He knows you. He knows that you take longer to do everything ;) And sure enough about an hour and a half later you pooped and it was big. Daddy was here alone with you and this is what he had to say about it in an email he sent: "It finally happened...and in an atomic fashion. I won't say more as I don't want to have to relive it again." Needless to say, it was big. Even though Daddy doesn't want to relive it we are both thrilled it happened.
Yesterday they took out your epidural and your catheter. Later in the day your IV went bad again. They sent for three different specialists to give you a new one and after six pokes they couldn't find a good vein. So, you went without IV fluids all night and did great. You are hooked up to NOTHING. (They took out your nose tube a few days ago.) You don't have any tubes. We ran into one of your docs from the PICU tonight and he said "Oh, William Unplugged." It is absolutely amazing to walk over to your bed and simply pick you up and carry you anywhere. We can go for walks, to the playroom, up and down the elevators. Your spirits are lifted. The sparkle in your eye is back. You smile more. Happy Day.
So what now? Good question. Maybe more restful nights, more play dates and excursions out of the house, more hugs and kisses, more back to normal. Even though I do believe our "normal" is not what it used to be and I don't think it ever will be again. In a good way. As I have said before, we are all changed from this. We look at you and at each other in a different light. We appreciate what we have and try (and don't always succeed) to see the silver lining. We know it could be worse. We have seen the worst. But we have made it to the other side with a little more perspective and appreciation for our family, friends, and faith in God. Little man, I love you. I love you so deeply I can't and won't ever be able to put it into words. You have helped me in ways I can't explain. I want you to know that without family, friends, and our Heavenly Father we can't do it. We won't make it. Rely on those things. Please, always have faith and know that you are personally known and watched over by a loving Heavenly Father. You may not always see it or feel it. But He is there. Be patient and have faith. It will all work out. You're proof of that already.
I love you. I'll see you at home!!
Yesterday they took out your epidural and your catheter. Later in the day your IV went bad again. They sent for three different specialists to give you a new one and after six pokes they couldn't find a good vein. So, you went without IV fluids all night and did great. You are hooked up to NOTHING. (They took out your nose tube a few days ago.) You don't have any tubes. We ran into one of your docs from the PICU tonight and he said "Oh, William Unplugged." It is absolutely amazing to walk over to your bed and simply pick you up and carry you anywhere. We can go for walks, to the playroom, up and down the elevators. Your spirits are lifted. The sparkle in your eye is back. You smile more. Happy Day.
So what now? Good question. Maybe more restful nights, more play dates and excursions out of the house, more hugs and kisses, more back to normal. Even though I do believe our "normal" is not what it used to be and I don't think it ever will be again. In a good way. As I have said before, we are all changed from this. We look at you and at each other in a different light. We appreciate what we have and try (and don't always succeed) to see the silver lining. We know it could be worse. We have seen the worst. But we have made it to the other side with a little more perspective and appreciation for our family, friends, and faith in God. Little man, I love you. I love you so deeply I can't and won't ever be able to put it into words. You have helped me in ways I can't explain. I want you to know that without family, friends, and our Heavenly Father we can't do it. We won't make it. Rely on those things. Please, always have faith and know that you are personally known and watched over by a loving Heavenly Father. You may not always see it or feel it. But He is there. Be patient and have faith. It will all work out. You're proof of that already.
I love you. I'll see you at home!!
Monday, March 7, 2011
Slowly Passing
Time, gas, poo. All things that are slowly passing in our lives lately. Sorry, I know that is gross, but it's true. . .and I am a little over tired right now, so everything is a little more funny, instead of gross. But, seriously, we are just waiting for something to pass through your little intestines. This morning at about 3:30am you did pass gas, but we are still waiting for something more solid. Once that happens everything else should move along quickly. They will take out your nose (NG) tube, epidural, and catheter. And maybe you can eat a little something. We tried to get you up and moving this morning, but you just acted weak and frustrated. You are hooked up to so many things and haven't had any solid nourishment for 4 and a half days, so I don't blame you. Lots of sleep and movie watching. Your favorite movie in the hospital has been CARS.
Last night was a little rough. You fell asleep for the night around 8pm. At 10pm your nurse discovered that your IV had gone bad and had to be replaced. Waking you up in order to pull out an IV in one arm that was swollen and then poking you in order to put a new IV in your other arm was pretty awful. Your nurse also noticed that your NG tube had blood in it, which isn't normal. So they did an x-ray to see where it was positioned and discovered it needed to be advanced 6 cm. The base of the tube was in your esophagus instead of your stomach and had suctioned up against a wall and was irritating that area, thus the blood. So off came the tape that was holding the tube up against your face and down went the tube, gagging you a little. An hour and a half later we were ready for you get back to sleep. Needless to say, you slept late this morning :).
All in all you are happy though. You are weak and don't want to do much, but you seem content to watch movies, sleep, and send your Hot Wheels cars down your track.
This past week Daddy got Chinese food and the two fortunes we got in our cookies seemed very appropriate. First: "The wise thing to do is to prepare for the unexpected." And second: "You would do well to work as a team in the coming week." I think we can do that. This whole experience has taught us that life is never predictable and that the only way to survive the unexpected is to rely on those we love.
So we wait. And send good vibes to your bowels (pun intended). Move, move, move.
We love you, darling. We are here, waiting and praying for progress and pain-free healing. Keep fighting, little man! xoxoxo
Last night was a little rough. You fell asleep for the night around 8pm. At 10pm your nurse discovered that your IV had gone bad and had to be replaced. Waking you up in order to pull out an IV in one arm that was swollen and then poking you in order to put a new IV in your other arm was pretty awful. Your nurse also noticed that your NG tube had blood in it, which isn't normal. So they did an x-ray to see where it was positioned and discovered it needed to be advanced 6 cm. The base of the tube was in your esophagus instead of your stomach and had suctioned up against a wall and was irritating that area, thus the blood. So off came the tape that was holding the tube up against your face and down went the tube, gagging you a little. An hour and a half later we were ready for you get back to sleep. Needless to say, you slept late this morning :).
All in all you are happy though. You are weak and don't want to do much, but you seem content to watch movies, sleep, and send your Hot Wheels cars down your track.
This past week Daddy got Chinese food and the two fortunes we got in our cookies seemed very appropriate. First: "The wise thing to do is to prepare for the unexpected." And second: "You would do well to work as a team in the coming week." I think we can do that. This whole experience has taught us that life is never predictable and that the only way to survive the unexpected is to rely on those we love.
So we wait. And send good vibes to your bowels (pun intended). Move, move, move.
We love you, darling. We are here, waiting and praying for progress and pain-free healing. Keep fighting, little man! xoxoxo
Friday, March 4, 2011
Together Again
Together Again. It sounds like the title of a love song. I "googled" it. It actually is the title to one of Janet Jackson's songs. A song I used to listen and dance to. Funny. You would probably like the song. It has the kind of beat you like. Little side note: You really like to dance. We were walking through a parking lot several months ago and a car drove by us with a super loud base, windows rolled down, blaring music. And what did both you and Lance do? Starting moving to the beat. Super cute.
Back to the subject. Your intestines are together again. You had surgery yesterday. All went well and you are recovering well. We checked into the hospital on Wednesday afternoon. They started your IV and started you on a "flush." Your digestive tract needed to be completely flushed for the surgery. So they sent over 1000 mL of fluid through you. I changed your ostomy bag twice, once at 3am on Thursday morning and again at 7am. But 7am was the last ostomy bag I will ever do. Whoohooooooooooo!!!! You couldn't eat or drink anything on Thursday. You did amazingly well with that. We had to hide our food from you otherwise you did ask for it and get a little upset when we said "no." You mostly rested and slept on Thursday. About a half hour before we were called down to surgery you and I took a nice little nap together. It felt great. You went into surgery around 3:50pm. When they were getting you ready to be wheeled in you kind of freaked out a bit. So they gave you some Versed. That's pretty cool stuff. It's an anti-anxiety medication that even causes a little bit of amnesia. Within 5 seconds of that going into your IV you were all smiles and relaxation. You were even randomly laughing. At one point the anesthesiologist asked "Are you a little stoned?" and you answered "Yah." That was entertaining. In surgery they put your small intestine back together. They had to go through your mid-line scar again, but they were able to stitch that back up from the inside and make your scar even smaller than before. And they left the area where your stoma was open. There is so much bacteria that they need to just let it heal from the inside out. It has a lot of dressing in it. You also had an appendectomy. This was just to avoid having to mess around with your abdomen later on in life. You came out at about 6:50. All went well. You got an epidural and other pain meds and seemed pretty comfortable and relaxed.
I went home last night, and Daddy stayed at the hospital. He said it was a bit of a rough night. You seemed to be in pain. Not severe, but uncomfortable. They replaced your epidural machine and you seem to be resting well this morning.
So, we are just waiting for you to pass some gas or mucus or something and then they will start you on food and then we wait to see if that all goes through you well. As soon as it does we go home. You may still be kept on the feeding tube when we go home, but we will definitely cut back on the amount of formula you are given through the tube and work towards weaning you off soon.
All is well. I am so grateful. I kept telling myself that "time would pass." And it did. I am glad that life can be filled with a lot of good things even amongst the bad. We are so blessed. You are such a trooper. I love you!
Back to the subject. Your intestines are together again. You had surgery yesterday. All went well and you are recovering well. We checked into the hospital on Wednesday afternoon. They started your IV and started you on a "flush." Your digestive tract needed to be completely flushed for the surgery. So they sent over 1000 mL of fluid through you. I changed your ostomy bag twice, once at 3am on Thursday morning and again at 7am. But 7am was the last ostomy bag I will ever do. Whoohooooooooooo!!!! You couldn't eat or drink anything on Thursday. You did amazingly well with that. We had to hide our food from you otherwise you did ask for it and get a little upset when we said "no." You mostly rested and slept on Thursday. About a half hour before we were called down to surgery you and I took a nice little nap together. It felt great. You went into surgery around 3:50pm. When they were getting you ready to be wheeled in you kind of freaked out a bit. So they gave you some Versed. That's pretty cool stuff. It's an anti-anxiety medication that even causes a little bit of amnesia. Within 5 seconds of that going into your IV you were all smiles and relaxation. You were even randomly laughing. At one point the anesthesiologist asked "Are you a little stoned?" and you answered "Yah." That was entertaining. In surgery they put your small intestine back together. They had to go through your mid-line scar again, but they were able to stitch that back up from the inside and make your scar even smaller than before. And they left the area where your stoma was open. There is so much bacteria that they need to just let it heal from the inside out. It has a lot of dressing in it. You also had an appendectomy. This was just to avoid having to mess around with your abdomen later on in life. You came out at about 6:50. All went well. You got an epidural and other pain meds and seemed pretty comfortable and relaxed.
I went home last night, and Daddy stayed at the hospital. He said it was a bit of a rough night. You seemed to be in pain. Not severe, but uncomfortable. They replaced your epidural machine and you seem to be resting well this morning.
So, we are just waiting for you to pass some gas or mucus or something and then they will start you on food and then we wait to see if that all goes through you well. As soon as it does we go home. You may still be kept on the feeding tube when we go home, but we will definitely cut back on the amount of formula you are given through the tube and work towards weaning you off soon.
All is well. I am so grateful. I kept telling myself that "time would pass." And it did. I am glad that life can be filled with a lot of good things even amongst the bad. We are so blessed. You are such a trooper. I love you!
Tuesday, March 1, 2011
The Beginning of the End
Hey, Little Man. So, yes, this is the beginning of the end. We check back into the hospital tomorrow. Your surgery is scheduled for Thursday. They will take all of tomorrow prepping your little body. They need to "flush" your system. Get it all cleaned out and ready.
I am not really excited about any of this, except the end product. Which is a put back together William. The best product.
You are definitely ready and strong enough for the surgery. In the past five days or so Daddy and I have changed your ostomy bag about 10 times. I changed it three times yesterday! Luckily Daddy came home for the third, otherwise I might have cried through the whole thing :) The reason it has been leaking so much is because of your increased activity. You're a little machine. Up, down, over, under, rolling, climbing. Every time you move the bag moves with you. So, it quickly wiggles right off of you. Or, I don't know, maybe you are secretly picking at it so it will come off sooner so we will change it and you can watch "Fox and the Hound." Every time we change your bag we start up that movie. You LOVE that movie. I think we have watched it about a hundred times in the past few months. We are all quoting it. Hopefully, all you will remember, if anything, about your ostomy bags is good ol' Copper and Todd. But, all this hard stuff helps me to feel more ready to watch you go through another surgery and another hospital stay. And then after the hard part you may very well be done with hospitals for the rest of your life. That sounds nice.
I hope you're ready for this. Be strong and know I am loving you and willing and wanting to do whatever I can to make it easier. We're almost there, William. Let's do it. See you at the hospital. Sweet Dreams. Your mommy loves you like crazy!
I am not really excited about any of this, except the end product. Which is a put back together William. The best product.
You are definitely ready and strong enough for the surgery. In the past five days or so Daddy and I have changed your ostomy bag about 10 times. I changed it three times yesterday! Luckily Daddy came home for the third, otherwise I might have cried through the whole thing :) The reason it has been leaking so much is because of your increased activity. You're a little machine. Up, down, over, under, rolling, climbing. Every time you move the bag moves with you. So, it quickly wiggles right off of you. Or, I don't know, maybe you are secretly picking at it so it will come off sooner so we will change it and you can watch "Fox and the Hound." Every time we change your bag we start up that movie. You LOVE that movie. I think we have watched it about a hundred times in the past few months. We are all quoting it. Hopefully, all you will remember, if anything, about your ostomy bags is good ol' Copper and Todd. But, all this hard stuff helps me to feel more ready to watch you go through another surgery and another hospital stay. And then after the hard part you may very well be done with hospitals for the rest of your life. That sounds nice.
I hope you're ready for this. Be strong and know I am loving you and willing and wanting to do whatever I can to make it easier. We're almost there, William. Let's do it. See you at the hospital. Sweet Dreams. Your mommy loves you like crazy!
Subscribe to:
Posts (Atom)