I've decided to move my updates on Dawson to a CaringBridge site. I hope to update it daily with how Dawson is doing. For now, it includes a lot of what was on here - a backstory for how things started.
http://www.caringbridge.org/visit/dawsonhenry
Saturday, May 25, 2013
Sunday, May 19, 2013
It Won't Happen To Us
So you hear that saying all of the time - people who have things happen in their lives that say "I just never thought it would happen to us." And as a Mom, I was pretty darn sure I was prepared for the worst. I have spent many a times since the boys were born worrying about all of the things that could happen to them - cancer, car accidents, tumbling down two flights of stairs, getting into a fight, being stung by a bee and having life-threatening allergies, getting run over by a lawn mower, etc. I honestly thought I had run through in my head every possible thing that could happen to my children. Is that morbid? Oh my goodness yes. But I still did it.
And then all this happened. And even when we went to the ER for the 3rd time in a row, it never once crossed my mind a million years that this would be the result. I thought maybe he'd finally be admitted for a day or two, given some crazy antibiotics, and go home a few days later, hurting but otherwise ok.
Instead, here we are, four nights later with no end in sight. We don't have a clue as to what is going to happen to his legs. Best case scenario...he loses his toes? And worst case scenario...oh my god. And I cry...when I see his shoes that we packed in his bag before leaving for the ER Wednesday...when I remember that I signed him up for T-Ball that starts in June...when I take a look at that photos on the iPad and remember that of the 500 pictures he and Wesley have taken on there, 75% of them are of their feet. I have no idea why they were constantly taking pictures of their feet, but it's enough to gut you.
Dawson's been off the tube for 24 hours. It hasn't been great, or really all that good. Yes, all of his numbers are still looking. But physically and emotionally, he is a mess. Most of the time that he's awake, he's crying. He wants to go home so badly, and he wants to be a family there, so I am constantly hearing "I want to go home! I want my daddy!"
If there is a bright side to today (and to be honest, typing all of this, I don't even feel it), it's that we got moved to a bigger room with a larger window. I had teasingly asked yesterday, and then today asked again (not so teasingly). The nurse immediately thought it was a great idea - I think she knows that he's here for the long haul, and figured it would be easier on us. Plus, his new room is still right by the nurse's station, which is where he needs to be.
This photo reminded me that I haven't seen my baby smile since Wednesday. And now I can't stop crying...
And then all this happened. And even when we went to the ER for the 3rd time in a row, it never once crossed my mind a million years that this would be the result. I thought maybe he'd finally be admitted for a day or two, given some crazy antibiotics, and go home a few days later, hurting but otherwise ok.
Instead, here we are, four nights later with no end in sight. We don't have a clue as to what is going to happen to his legs. Best case scenario...he loses his toes? And worst case scenario...oh my god. And I cry...when I see his shoes that we packed in his bag before leaving for the ER Wednesday...when I remember that I signed him up for T-Ball that starts in June...when I take a look at that photos on the iPad and remember that of the 500 pictures he and Wesley have taken on there, 75% of them are of their feet. I have no idea why they were constantly taking pictures of their feet, but it's enough to gut you.
Dawson's been off the tube for 24 hours. It hasn't been great, or really all that good. Yes, all of his numbers are still looking. But physically and emotionally, he is a mess. Most of the time that he's awake, he's crying. He wants to go home so badly, and he wants to be a family there, so I am constantly hearing "I want to go home! I want my daddy!"
If there is a bright side to today (and to be honest, typing all of this, I don't even feel it), it's that we got moved to a bigger room with a larger window. I had teasingly asked yesterday, and then today asked again (not so teasingly). The nurse immediately thought it was a great idea - I think she knows that he's here for the long haul, and figured it would be easier on us. Plus, his new room is still right by the nurse's station, which is where he needs to be.
Saturday, May 18, 2013
A New Day
Dawson has had a very eventful day. This morning they changed the dressing on his legs, then he had plasmapheresis, and then...drum roll please...the breathing tube was removed - all before noon! His removal of the tube went amazing. They turned off his propofol (yep, the Michael Jackson drug) and told me he'd wake up in 10-30 minutes. About 3 minutes later, he was waking up. It was really hard to watch at first - he was so confused and scared and just wanted that tube out.
Once the tube was removed, we really saw his stubbornness. All he wanted was a drink of water...and he repeated it over and over and over. And over. Did I mention and over? They let him have some here and there, but wanted to wait about 4 hours before really letting him go to town. Still, he was so insistent on having water that I think he ended up getting about 8 ounces (and 2 Popsicles) over about an hour before he finally fell back asleep. Luckily, when he wakes up his water restriction will be removed. He'll be so darn excited.
We still don't know much about the extend of the injury to his legs. He has black ("dead") spots on his legs, and they are both purple and completely covered in blisters. We will be working to fight infection and just keep an eye on how things are progressing. One of the specialists stopped by after Dawson woke up, and he mentioned that his legs are actually a little encouraging, because they are not all black right now, only some spots. It hurts my chest, the amount that I am hoping and praying this all works out for Dawson.
Beyond that, everything else is still looking great. And he certainly showed the doctors and nurses here what an attitude and a great set of lungs he has, that's for sure. Oddly enough, I was That Mom, whose kid was just a screaming, while I sat there smiling and holding his hand and gently shushing him. Man, I have never, EVER been so happy to hear a kid scream in my life!
Once the tube was removed, we really saw his stubbornness. All he wanted was a drink of water...and he repeated it over and over and over. And over. Did I mention and over? They let him have some here and there, but wanted to wait about 4 hours before really letting him go to town. Still, he was so insistent on having water that I think he ended up getting about 8 ounces (and 2 Popsicles) over about an hour before he finally fell back asleep. Luckily, when he wakes up his water restriction will be removed. He'll be so darn excited.
We still don't know much about the extend of the injury to his legs. He has black ("dead") spots on his legs, and they are both purple and completely covered in blisters. We will be working to fight infection and just keep an eye on how things are progressing. One of the specialists stopped by after Dawson woke up, and he mentioned that his legs are actually a little encouraging, because they are not all black right now, only some spots. It hurts my chest, the amount that I am hoping and praying this all works out for Dawson.
Beyond that, everything else is still looking great. And he certainly showed the doctors and nurses here what an attitude and a great set of lungs he has, that's for sure. Oddly enough, I was That Mom, whose kid was just a screaming, while I sat there smiling and holding his hand and gently shushing him. Man, I have never, EVER been so happy to hear a kid scream in my life!
Friday, May 17, 2013
Heartbreak
It is mind boggling how much things can change in the span of a few days. I last updated Tuesday morning, and that afternoon we made it in to our pediatrician. Dawson was still doing pretty well - the purple on his thighs didn't seem so bright, and he was able to climb up onto the examining bed with no problem. Dawson's pedi thought the diagnosis was the same thing, and we decided that he'd return Thursday morning to check things out again.
Unfortunately, that night Dawson took another turn for the worse. He again woke up screaming and crying that his legs hurt, and around 9pm Tuesday night we discovered that the purple on his legs was now extending near his ankles. On top of that, his penis was EXTREMELY swollen and was also purple. We again called the nurses line, and they instructed us to go to the ER, so we did, for the 2nd night in a row.
Everyone in the ER recognized us right away. After getting checked in, we this time had a pediatrician that came and looked at Dawson. He again determined the same thing - HSP. After checking with a urologist, he again let me know that there is nothing they can really do to treat it, but gave me a prescription for steroids and sent us on our way around 1am. That night was one of the worst nights I've ever had with Dawson - he cried out and begged for more medicine all night. Our best time of sleep was a little before 5am, when Dawson decided he wanted to lay on me on the couch. He was able to settle in and get about an hour and a half of solid sleep.
Wednesday morning I spoke with the nurses and our pediatrician, and our pediatrician also called us back as well. We again just talked about keeping an eye on everything. Dawson spent the entire day sleeping, and by 3:00 that afternoon, we knew that he either had to go to the bathroom or go back to the ER. David and I took him to the bathroom to try to get him to go potty, and he could barely stand...and once we pulled down his underwear (him screaming and sobbing in pain), we saw why. His poor penis was covered in giant blisters, at least one that had popped. We ended up again at the ER.
This time, his blood work came back terrifying. His blood was scary thin, but also clotting like crazy in his legs. They immediately said they were going to transfer him to the Children's Hospital.
It has been the start of a nightmare and a lot of uncertainty. His blood work continued to come back with bad news, and they were doing a lot of transfusions. His kidneys were having issues, and there were concerns about his bladder and liver. Additionally, the purple on his legs kept getting darker and darker and spreading to almost every part of his legs.
We found out that his diagnosis of HSP was incorrect. Incorrect, but not totally off base. What we've been told by the numerous specialty docs that have come in is that even if he would have been admitted on Monday, they wouldn't have been able to do anything to prevent this. Officially, it's being referred to as Purpura Fulminans, but his situation is so unique that docs are pretty well stumped. His situation is so unique that one doctor mentioned that they were only able to find about 10 cases that were like his, because the only real symptom of purpura fulminans he had was the purple legs - nothing else really fits the bill.
So, here we are another day. We've gotten to where everything is stable - his kidneys look great, and his most recent blood work has come back good news - he hasn't had to have a transfusion since last night. We are now just waiting to see what will happen with his legs. We know that his feet are not getting any blood. They are purple and so, so cold. We were informed yesterday that there is a VERY good chance he can lose parts of one or both legs. It's absolutely terrifying, and we essentially have to sit and wait. The most recent update is that his left leg seems to have reduced swelling, but we won't know of the extent of the damage of either leg for a few more days at least.
Dawson is currently sedated and intubated. He wakes up every 6 or so hours, and his terrified, because he is strapped down so he doesn't pull out his tube. He recognizes David and I - the first time he heard my voice, he started crying, mouthing, "Mommy, Mommy." The same thing happened when he first heard David's voice. The tears just started flowing. It's encouraging and beyond heartbreaking.
Tomorrow they hope to take the tube out. Part of the concern is pain management. The burn team is treating his legs, and we want to be sure that we can manage his pain as best as possible.
My mind is reeling with all of the possibilities of what his future will be like. Regardless of what happens, he has a lot of pain to go through, and it hurts so bad to think about. I'd give anything to take away his pain. I want to hold him with no wires, annoy him with my kisses, and breathe in the smell of his hair. I haven't left the hospital since we got here, and while I know that he's going to be here awhile and I probably should, I just can't do it yet. I just can't.
There are a lot of people praying for him - I am amazed at the number of people cheering and praying for my boy, and am so grateful for the support of everyone.
Unfortunately, that night Dawson took another turn for the worse. He again woke up screaming and crying that his legs hurt, and around 9pm Tuesday night we discovered that the purple on his legs was now extending near his ankles. On top of that, his penis was EXTREMELY swollen and was also purple. We again called the nurses line, and they instructed us to go to the ER, so we did, for the 2nd night in a row.
Everyone in the ER recognized us right away. After getting checked in, we this time had a pediatrician that came and looked at Dawson. He again determined the same thing - HSP. After checking with a urologist, he again let me know that there is nothing they can really do to treat it, but gave me a prescription for steroids and sent us on our way around 1am. That night was one of the worst nights I've ever had with Dawson - he cried out and begged for more medicine all night. Our best time of sleep was a little before 5am, when Dawson decided he wanted to lay on me on the couch. He was able to settle in and get about an hour and a half of solid sleep.
Wednesday morning I spoke with the nurses and our pediatrician, and our pediatrician also called us back as well. We again just talked about keeping an eye on everything. Dawson spent the entire day sleeping, and by 3:00 that afternoon, we knew that he either had to go to the bathroom or go back to the ER. David and I took him to the bathroom to try to get him to go potty, and he could barely stand...and once we pulled down his underwear (him screaming and sobbing in pain), we saw why. His poor penis was covered in giant blisters, at least one that had popped. We ended up again at the ER.
This time, his blood work came back terrifying. His blood was scary thin, but also clotting like crazy in his legs. They immediately said they were going to transfer him to the Children's Hospital.
It has been the start of a nightmare and a lot of uncertainty. His blood work continued to come back with bad news, and they were doing a lot of transfusions. His kidneys were having issues, and there were concerns about his bladder and liver. Additionally, the purple on his legs kept getting darker and darker and spreading to almost every part of his legs.
We found out that his diagnosis of HSP was incorrect. Incorrect, but not totally off base. What we've been told by the numerous specialty docs that have come in is that even if he would have been admitted on Monday, they wouldn't have been able to do anything to prevent this. Officially, it's being referred to as Purpura Fulminans, but his situation is so unique that docs are pretty well stumped. His situation is so unique that one doctor mentioned that they were only able to find about 10 cases that were like his, because the only real symptom of purpura fulminans he had was the purple legs - nothing else really fits the bill.
So, here we are another day. We've gotten to where everything is stable - his kidneys look great, and his most recent blood work has come back good news - he hasn't had to have a transfusion since last night. We are now just waiting to see what will happen with his legs. We know that his feet are not getting any blood. They are purple and so, so cold. We were informed yesterday that there is a VERY good chance he can lose parts of one or both legs. It's absolutely terrifying, and we essentially have to sit and wait. The most recent update is that his left leg seems to have reduced swelling, but we won't know of the extent of the damage of either leg for a few more days at least.
Dawson is currently sedated and intubated. He wakes up every 6 or so hours, and his terrified, because he is strapped down so he doesn't pull out his tube. He recognizes David and I - the first time he heard my voice, he started crying, mouthing, "Mommy, Mommy." The same thing happened when he first heard David's voice. The tears just started flowing. It's encouraging and beyond heartbreaking.
Tomorrow they hope to take the tube out. Part of the concern is pain management. The burn team is treating his legs, and we want to be sure that we can manage his pain as best as possible.
My mind is reeling with all of the possibilities of what his future will be like. Regardless of what happens, he has a lot of pain to go through, and it hurts so bad to think about. I'd give anything to take away his pain. I want to hold him with no wires, annoy him with my kisses, and breathe in the smell of his hair. I haven't left the hospital since we got here, and while I know that he's going to be here awhile and I probably should, I just can't do it yet. I just can't.
There are a lot of people praying for him - I am amazed at the number of people cheering and praying for my boy, and am so grateful for the support of everyone.
Tuesday, May 14, 2013
My poor, poor little man
So, seriously. It's like my kids can't just get a little sick. Last fall, both boys got e.coli, and were out of daycare for 38 days. Yes, I counted. Every day.
Saturday we took the boys to the Kalahari, and that evening, Dawson was suddenly covered in hives. I had him take some benadryl, but he woke up in the middle of the night crying because he itched so bad. By the next morning, they had spread and were all over. He was in great spirits (as evidenced by this photo, where he danced as I tried to take pictures of him), but was still crazy itchy. I spoke w/ the nurse at urgent care, and after running through the symptoms, she said it's all sounding like a reaction to a virus, but to keep an eye on it.
Sunday night he spent the night with my in-laws, and Monday morning they called to say that his torso looked better, but his face was swollen. I again called the nurses office and ran through the symptoms, and answered some questions (no joint pain, no purple rash). She again said virus and to keep an eye on it.
Last night around 6:30 I got the boys in to the tub, and David washed Dawson and got him into his pajamas. Neither of us noticed anything out of the ordinary. Around 7:30, Dawson asked me to carry him to bed because his legs hurt, so I did, and he was asleep before 8.
A little before 9, he suddenly woke up, twitching, screaming, and sobbing that his legs hurt. He wouldn't let us touch him, and he was so hard to calm down. I called urgent care again, and while we waited for them to call back, we tried to coax some ibuprofen into Dawson. He finally took it, and then we tried to coax him into showing us his legs. We finally just grabbed him and pulled his pants down - and his legs were awful. His thighs were giant purple bruises - just covered. I ended up immediately getting dressed and driving him to the ER.
By the time we got there, the ibuprofen had helped and he was able to walk some. The PA took a look at him and was able to throw something out right away - Henoch-Schonlein purpura. Basically, his immune system reacting all wrong to a virus. He got some fluids, had some blood work done, and was able to go home. They had to check with the Children's Hospital first, because this can cause kidney issues, and D refused to give a urine sample. Luckily, the blood work showed no kidney issues, so they said that as long as I bring a sample to our pedi today, we should be good.
So, here we are at home, 9:30 the next morning. He's exhausted and not eating, but he's drank almost a full glass of water. I tried to get him to go potty, but he still refuses to go, and he hasn't gone since we got home around 1:30am. I'm still pumping him full of benadryl and ibuprofen, and we see his primary doc this afternoon.
The crazy part is that this can apparently take WEEKS to go away. Seriously, weeks? I don't know if it means weeks as in, no daycare for weeks, or just that he may have bruising, etc for weeks. As he is now, he definitely won't be going to daycare for a few days...maybe the rest of the week? My poor guy.
Saturday we took the boys to the Kalahari, and that evening, Dawson was suddenly covered in hives. I had him take some benadryl, but he woke up in the middle of the night crying because he itched so bad. By the next morning, they had spread and were all over. He was in great spirits (as evidenced by this photo, where he danced as I tried to take pictures of him), but was still crazy itchy. I spoke w/ the nurse at urgent care, and after running through the symptoms, she said it's all sounding like a reaction to a virus, but to keep an eye on it.
Last night around 6:30 I got the boys in to the tub, and David washed Dawson and got him into his pajamas. Neither of us noticed anything out of the ordinary. Around 7:30, Dawson asked me to carry him to bed because his legs hurt, so I did, and he was asleep before 8.
By the time we got there, the ibuprofen had helped and he was able to walk some. The PA took a look at him and was able to throw something out right away - Henoch-Schonlein purpura. Basically, his immune system reacting all wrong to a virus. He got some fluids, had some blood work done, and was able to go home. They had to check with the Children's Hospital first, because this can cause kidney issues, and D refused to give a urine sample. Luckily, the blood work showed no kidney issues, so they said that as long as I bring a sample to our pedi today, we should be good.
So, here we are at home, 9:30 the next morning. He's exhausted and not eating, but he's drank almost a full glass of water. I tried to get him to go potty, but he still refuses to go, and he hasn't gone since we got home around 1:30am. I'm still pumping him full of benadryl and ibuprofen, and we see his primary doc this afternoon.
The crazy part is that this can apparently take WEEKS to go away. Seriously, weeks? I don't know if it means weeks as in, no daycare for weeks, or just that he may have bruising, etc for weeks. As he is now, he definitely won't be going to daycare for a few days...maybe the rest of the week? My poor guy.
Monday, May 6, 2013
For the love of books
My awesome kiddos have my love of books. Especially Dawson - he has loved books from the time he was a little baby.
In the past couple weeks, Dawson in particular has reacted pretty strongly to some books that we've read. The first was The Giving Tree. I read it to the boys the other week, and when we finished, Dawson was noticeably quieter. I asked him a question, and when he answered, his voice was shaky, like he was about ready to cry. I finally asked him if he was ok, and he told me "I feel sad." He had a hard time articulating it, but he told me that the book made him feel sad. I felt so bad that he was so sad, but a tiny part was excited - a book has already drawn out such a strong feeling from him?! Please tell me this will continue!
But of course, other times, he doesn't react quite like I expect. Last night I picked out Love You Forever for the boys. I have never been able to read that book without tearing up/crying. Never. When Dawson was a baby, I could barely look at the cover without crying. So last night I was feeling sentimental and picked up that book to read. I was tearing up by the time the mom was rocking her toddler back and forth, back and forth, back and forth, and by the time I got to the teenager, I was crying. Dawson, however, wasn't phased a bit by my emotions. Instead, he started laughing, "That mom can't lift that BIG boy!" Leave it to a 4 year old to take the story literally. On the plus side, I didn't cry quite as much through it!
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| Well, except this book. Apparently The Cider House Rules made him cry. |
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| This was a typical day in the Henry house when Dawson was a baby. The bookshelf was no match for him. |
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| 2.5 year old Dawson and 1 year old Wesley |
But of course, other times, he doesn't react quite like I expect. Last night I picked out Love You Forever for the boys. I have never been able to read that book without tearing up/crying. Never. When Dawson was a baby, I could barely look at the cover without crying. So last night I was feeling sentimental and picked up that book to read. I was tearing up by the time the mom was rocking her toddler back and forth, back and forth, back and forth, and by the time I got to the teenager, I was crying. Dawson, however, wasn't phased a bit by my emotions. Instead, he started laughing, "That mom can't lift that BIG boy!" Leave it to a 4 year old to take the story literally. On the plus side, I didn't cry quite as much through it!
Saturday, May 4, 2013
The Effing Awful 3s
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| How can this face be a beast? Turns out very easily... |
For Wesley, threes = outright defiance. We've been trying to curb the ridiculous amount of unnecessary potty language ("What do you want for dinner?" "A butt sandwich." Right, I know, funny the first time, not so much now) with both kids. Dawson went to timeout once today because of potty language. Wes went three times. Oy. On top of that, Wes is a thrower and a hitter. Tell Wesley to go to timeout for potty words, and he's likely to try to hit you or throw a toy on his way there (or, today in his prime, do both). I'm not 100% sure that timeouts are even what he needs, since he either flat out refuses to go, or throws a fit while going, or worse, sits there and smirks. Yes, smirks.
And then he has his moments like this - sleeping soundly, snoring quietly, with his still-baby cheeks and lips, and it totally makes my uterus ache* and I forget what an absolute dick he was today!
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| *Not enough to actually have another kid, though |
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