I have been overwhelmed by the transition and have not had a chance to post, but Henry has been home for two weeks and is doing well! He is using an ng tube for all feedings until we have his next swallow study done on Aug. 3rd. Praying for good news that day, as we would love to move back to the bottle and food soon!
I will try to post a longer update soon . . . . Thank you for all of your caring words!
Thursday, July 15, 2010
Thursday, June 24, 2010
Making the Best of Boring
Hi, I'm Henry. I've been in the hospital for four weeks. And I'm bored.
So while my brothers are at Grammy and Paw Paw's house doing this . . .
My "big day out" going to the hospital atrium looks like this . . .
But I'm making the best of it. I went outside yesterday with Mommy, Daddy and Uncle Matt, and I felt the wind in my hair.
I pulled my ng tube out when I got really bored yesterday, and I smiled and laughed. Too bad Mommy and Daddy didn't get a picture of THAT.
So I'm having some fun. I even had Music Therapy today!
They keep saying I will get to go home soon. I hear it won't be today, but I'm sure I'll find something to do while I wait!
Monday, June 21, 2010
Setbacks
We thought today would be the day, but we're not home yet. And it sure looks like we won't be until the end of the week. Henry has had some setbacks over the weekend, including low grade fevers, the recurrence of a slight rash, a big bout of vomiting and several days of . . . hmm, I keep trying to think of the most blog-friendly way to say "diarrhea," but there doesn't seem to be one. Feel free to leave suggestions in the comment box. ;)
The vomiting/rash combo gave me flashbacks about Day One, and I had a hard time holding it together when the resident said, "But he looks fine right now!" Some day I'm sure I'll blog all about the frustrations of our first week here, but the theme of the week was, "He's fine, Mom! It's just a virus! He'll turn around by tomorrow! You'll see!" That is, until Day Six when he was moved to the PICU. I know it's unlikely that the cycle would repeat, but after what we have been through, it was hard not to let anxiety get the best of me. The good news is that the vomiting, rash and fever are gone. Which leaves us with the . . . watery stools? At first, we suspected that it was caused by the thickener we were adding to his formula (a necessity because he has been choking on thin liquids, probably as a result of being intubated for so long). We tried some cereal as a replacement thickener, which seemed to cause or at least exacerbate the vomiting. So we discontinued both thickeners and gave him a break from the bottle yesterday.
In the meantime, he was scheduled for a modified barium swallow/videofluoroscopy this morning, which showed exactly where the liquid goes when he takes a bottle. They offered him several different thicknesses to see if he could safely drink any of them. Unfortunately, Henry aspirated every one, which means that he will be off the bottle for 6 - 8 weeks. I knew we would probably come home with the ng tube, but I never imagined we would have to go so long without offering him anything by mouth! After that, he will need to have another swallow study to see if there has been any improvement. If not, we wait again and try again, putting several weeks in between each swallow study to avoid overexposure to radiation. Good times.
Trust me, I know I should just be thankful he is here. I am grateful for the miraculous recovery he is making. But this setback was hard to swallow. No pun intended actually, but it seems a fitting end to this post.
The vomiting/rash combo gave me flashbacks about Day One, and I had a hard time holding it together when the resident said, "But he looks fine right now!" Some day I'm sure I'll blog all about the frustrations of our first week here, but the theme of the week was, "He's fine, Mom! It's just a virus! He'll turn around by tomorrow! You'll see!" That is, until Day Six when he was moved to the PICU. I know it's unlikely that the cycle would repeat, but after what we have been through, it was hard not to let anxiety get the best of me. The good news is that the vomiting, rash and fever are gone. Which leaves us with the . . . watery stools? At first, we suspected that it was caused by the thickener we were adding to his formula (a necessity because he has been choking on thin liquids, probably as a result of being intubated for so long). We tried some cereal as a replacement thickener, which seemed to cause or at least exacerbate the vomiting. So we discontinued both thickeners and gave him a break from the bottle yesterday.
In the meantime, he was scheduled for a modified barium swallow/videofluoroscopy this morning, which showed exactly where the liquid goes when he takes a bottle. They offered him several different thicknesses to see if he could safely drink any of them. Unfortunately, Henry aspirated every one, which means that he will be off the bottle for 6 - 8 weeks. I knew we would probably come home with the ng tube, but I never imagined we would have to go so long without offering him anything by mouth! After that, he will need to have another swallow study to see if there has been any improvement. If not, we wait again and try again, putting several weeks in between each swallow study to avoid overexposure to radiation. Good times.
Trust me, I know I should just be thankful he is here. I am grateful for the miraculous recovery he is making. But this setback was hard to swallow. No pun intended actually, but it seems a fitting end to this post.
Saturday, June 19, 2010
Feelin' the Love
All three kings had some fun today. . . William and Edmund monkeyed around with Daddy and Uncle Matt:
. . . and we took them to see the Karate Kid.
Meanwhile, Henry had Grammy and Paw Paw (my parents) all to himself. They are heading home tomorrow and will be missed so much. I don't know what we would have done without them . . . they are a huge source of strength and support. Here's Henry giving them some thank you hugs and kissies:
We have been blessed beyond measure by the love and support of family and friends. From the local visitors bringing immediate needs like phone chargers, clean clothes, an extra car . . . to those offering coffee and "please-come-now-on-call-friend-therapy" . . . to the visitors from afar (Louisiana, California, Ohio) . . . we have felt so loved and cared for. THANK YOU for the meals, the babysitting, the cards and gifts, the packages for our big boys . . . all of these things - the many ways you are filling needs before we even have time to realize them - have been such an encouragement to us. I'm so thankful for the connection to people online as we continue to spend lonely nights here in the hospital. Above all, thank you for your prayers. We do believe that God has heard the cries of His people asking to heal Henry. Of course there is no way to actually measure prayer, but I have a sense that this effort was enormous. I do believe all continents are accounted for save Antarctica (please, Antarcticans, correct me if I'm wrong). And this vision of people in all parts of the world collectively sending up pleas for our boy . . . it brings me to tears. We love him so much. He is a gift and a miracle.
Friday, June 18, 2010
Weaning
So . . . when is he coming home? This is the question on everyone's minds. For the past two days, there has been talk of sending him over to an inpatient rehabilitation program. We had mixed feelings about that idea, because it includes at least 3 hours a day of intensive therapy. For certain, Henry is not back to where he was, and it may be a long road to regain some of the skills he already had. But he tires so easily that it seems excessive for him. Still, I was willing to give it a try if it meant that we would still be able to have all the resources of a hospital surrounding him.
Until last night, they were weaning him off of his oxygen. Two nights ago, he only needed a small amount for about an hour. Last night, he never needed it!!
He is also weaning off of his pain medications. This is something we can do at home, but I have felt more comfortable being here for it since he has shown signs of withdrawal and they have made changes to the dose accordingly.
He is also learning how to use the bottle again. Yesterday, he took three 2 oz bottles over the course of a day! His ng tube may be in for a while, and we have been told to prepare ourselves to bring him home with his tube. We would be trained to use the pump and reinsert the tube if needed (he's getting the hang of hooking the small, untaped part of the tube with his finger and trying to pull it out). Again, I know we can do it, but we've had one nurse insert his ng tube into his lung - fortunately an x-ray showed the error before it became a problem. Without an x-ray, I'm not sure I'd feel comfortable doing it myself!
Today, they have determined that the inpatient rehab program is not the best fit for him. Their best guess is that he will be here through the weekend and possibly be discharged on Monday. Henry is probably ready to leave the confines of the hospital . . . It's MOMMY who needs to be weaned!
Thursday, June 17, 2010
Monday, June 14, 2010
What Happened?
We'll always wonder what happened. How did he get so sick? What made Henry go from this:
to this (this is only Day 4 -- I'm sparing you the worst photos because I can't bear to put them online):
in such a short period of time?
No one knows. Here we are at one of the top hospitals in the country, but no matter how amazing the doctors are, they are the first to admit that they don't have all the answers. And Henry's case has been called a "head scratcher" by numerous physicians. Those are not the words any parent wants to hear. . . we would like a clear diagnosis and plan of treatment, of course. But all they can do is put their heads together and give us their best guess.
From the beginning, they have said, "This is probably viral," but the only virus to test positive was rhinovirus. On Day 5, due to his rash and persistent fever, they began to consider Kawasaki Disease, which is not viral. It also does not have a definitive test, which makes it very difficult to diagnose. Instead, it's a constellation of symptoms that fit together and point towards the condition. Henry has had several of the symptoms of Kawasaki, but not all of them (and some of the most obvious symptoms were missing). His blood work, for the most part, has not pointed to Kawasaki (but in some ways it has, adding to the confusion). It was explained to me on Day 5 that they needed to determine whether this was Kawasaki before Day 10, for after Day 10 a multitude of effects could occur (affecting his heart, liver and other vital organs). There is a treatment for Kawasaki that can be highly effective if given before Day 10.
By Day 6, most of the doctors believed this was not Kawasaki and decided not to treat him for that. Also on Day 6, his chest x-ray showed pneumonia, his breathing became even more labored, he was showing signs of sepsis and he was admitted to the PICU in the middle of the night. Diagnosis needed to take a back seat to maintaining and saving his life. And they did, praise God.
However, diagnosis became important again when Henry went from this (much better):
back to this:
in just 12 hours. The rash came back and we started to feel like we had backtracked to Day 3 all over again. It was so hard not to begin to lose hope. We couldn't bear to walk down that road again. Not when we had just gotten him back. And worst of all, doctors began revisiting Kawasaki. Now. On Day 17. A full week after treatment would have been effective in preventing serious heart problems (like coronary artery aneurysms), liver problems, etc. To say the least, we were scared. And angry. Teams of doctors from Dermatology, Infectious Disease and Cardiology were called in to look at him yesterday, and for the FIRST time, they all wanted to see the photos I have been taking every day (which show the progression of the rash). And of course, there was no consensus. Dermatology said it's probably Kawasaki. Infectious Disease said they'd bet not. Cardiology said definitely not. We didn't know whether to be relieved that most of them thought it wasn't Kawasaki or just frustrated that NO ONE KNOWS. At that point, we asked for an echocardiogram. They didn't feel the echo was necessary after determining that it's "probably not Kawasaki," but in my opinion, why WOULDN'T we do one, just to be sure that there were no ill effects on his heart? We needed to know, if for no other reason than to put OUR hearts to rest. And it did. His echo was clear. And we are thankful.
And yes, still frustrated. We don't know why his rash returned on Saturday (perhaps it was a reaction to meds, perhaps it had been blocked by steroids for a few days and returned, perhaps . . . perhaps . . . ). But we are coming to accept the fact that their "best guess" is all we will ever have. At this point, they seem to be sticking to the diagnosis of rhinovirus with a secondary superinfection of Staph Aurea. They have seen cases of Staph Aurea which, oddly enough, mimic the rash of Kawasaki Disease. This, in the end, sounds like the most reasonable explanation. The rash appears to be slowly disappearing and I'm happy to report that Henry now looks like this:
Regardless of the diagnosis, Henry is HEALING. And that, of course, is the most important news of all.
to this (this is only Day 4 -- I'm sparing you the worst photos because I can't bear to put them online):
in such a short period of time?
No one knows. Here we are at one of the top hospitals in the country, but no matter how amazing the doctors are, they are the first to admit that they don't have all the answers. And Henry's case has been called a "head scratcher" by numerous physicians. Those are not the words any parent wants to hear. . . we would like a clear diagnosis and plan of treatment, of course. But all they can do is put their heads together and give us their best guess.
From the beginning, they have said, "This is probably viral," but the only virus to test positive was rhinovirus. On Day 5, due to his rash and persistent fever, they began to consider Kawasaki Disease, which is not viral. It also does not have a definitive test, which makes it very difficult to diagnose. Instead, it's a constellation of symptoms that fit together and point towards the condition. Henry has had several of the symptoms of Kawasaki, but not all of them (and some of the most obvious symptoms were missing). His blood work, for the most part, has not pointed to Kawasaki (but in some ways it has, adding to the confusion). It was explained to me on Day 5 that they needed to determine whether this was Kawasaki before Day 10, for after Day 10 a multitude of effects could occur (affecting his heart, liver and other vital organs). There is a treatment for Kawasaki that can be highly effective if given before Day 10.
By Day 6, most of the doctors believed this was not Kawasaki and decided not to treat him for that. Also on Day 6, his chest x-ray showed pneumonia, his breathing became even more labored, he was showing signs of sepsis and he was admitted to the PICU in the middle of the night. Diagnosis needed to take a back seat to maintaining and saving his life. And they did, praise God.
However, diagnosis became important again when Henry went from this (much better):
back to this:
in just 12 hours. The rash came back and we started to feel like we had backtracked to Day 3 all over again. It was so hard not to begin to lose hope. We couldn't bear to walk down that road again. Not when we had just gotten him back. And worst of all, doctors began revisiting Kawasaki. Now. On Day 17. A full week after treatment would have been effective in preventing serious heart problems (like coronary artery aneurysms), liver problems, etc. To say the least, we were scared. And angry. Teams of doctors from Dermatology, Infectious Disease and Cardiology were called in to look at him yesterday, and for the FIRST time, they all wanted to see the photos I have been taking every day (which show the progression of the rash). And of course, there was no consensus. Dermatology said it's probably Kawasaki. Infectious Disease said they'd bet not. Cardiology said definitely not. We didn't know whether to be relieved that most of them thought it wasn't Kawasaki or just frustrated that NO ONE KNOWS. At that point, we asked for an echocardiogram. They didn't feel the echo was necessary after determining that it's "probably not Kawasaki," but in my opinion, why WOULDN'T we do one, just to be sure that there were no ill effects on his heart? We needed to know, if for no other reason than to put OUR hearts to rest. And it did. His echo was clear. And we are thankful.
And yes, still frustrated. We don't know why his rash returned on Saturday (perhaps it was a reaction to meds, perhaps it had been blocked by steroids for a few days and returned, perhaps . . . perhaps . . . ). But we are coming to accept the fact that their "best guess" is all we will ever have. At this point, they seem to be sticking to the diagnosis of rhinovirus with a secondary superinfection of Staph Aurea. They have seen cases of Staph Aurea which, oddly enough, mimic the rash of Kawasaki Disease. This, in the end, sounds like the most reasonable explanation. The rash appears to be slowly disappearing and I'm happy to report that Henry now looks like this:
Regardless of the diagnosis, Henry is HEALING. And that, of course, is the most important news of all.
Subscribe to:
Posts (Atom)