Thursday, June 28, 2012
4 months (hospital day #121)
Ryder is having a pretty good week. He is back off the Sipap (for good this time I hope) and just getting positive pressure treatments with his his high flow nasal canula. His chest xray still looks good! He is back on bolus feeds, really slowly at first. One of his blood gas numbers is on the low side so he will be wearing a NIRS monitor for today just to make sure everything else looks ok. Ryder is doing much better with his head control and batting at toys. He will catch up I'm sure, just will take a while...We have been looking for some [any] long term plans -- so...tentatively Ryder will be going to the cath lab sometime next week to see if his pulmonary pressures are ready for his next heart surgery. Crazy. The next stage, "the Glenn" is usually done between 4-6 months when baby weighs > 4 kg, though. So, apparently he is actually that big...see for yourself!
In the meantime, our nanny has started (respiratory viruses = really bad news for heart baby = keep Ryder at home) and is probably 10 x busier entertaining Addy than she would have been if Ryder was already home!! Yesterday they went swimming, made pink cupcakes and made red, white, and blue 4th of July handprints. I know, seriously - Addy's most likely over mom already! I am on call this weekend and then will be essentially finished with my fellowship consults/call which is really exciting news too. Hopefully this last weekend will treat us well...who am I kidding though - July 1st? Maybe that's why Ryder looks so apprehensive - don't worry little warrior - interns don't rotate through the PICU!
Saturday, June 23, 2012
Wednesday, June 20, 2012
Desperately seeking a countdown.
I could be wrong, but does anyone else think this is the longest week ever? I know - it is only Tuesday!
Ryder is overall doing well. His lung is still inflated and he is now on the Sipap just "when sleeping". So mostly at night and at random unpredictable intervals in the day, due to the fact that he is a baby and sleeps whenever he feels like it, or is just plain bored. Hopefully that plan will be more organized tomorrow going to Sipap at night only and on the nasal canula during the day. He is still on milrinone but based on the current attending's plan may go back off it on Thursday. He is still on continuous feeds instead of the boluses, so he has to go back to boluses before trials at bottles again. Not sure when that will be...he seems overall to be doing really well. I wish I didn't feel so frustrated then, but that is hard to avoid seeing as the main reason this week seems so long is that it already happened over a month ago. Same sipap, milrinone wean, continuous feeds. Because of the deja vu, we still have no even guestimate plans on when he can try to go off more "flow" on his nasal canula, when he can try to eat again, when he will get his pre-Glenn cath or when we can take Ryder home. No clue, no plans, no countdown. Longest week ever.
But enough venting...Ryder is gaining some fab cheek-flab...LOVE. He is so funny...he can sense a respiratory therapist a mile away and gives them the most dramatic evil eyes I think any 3 1/2 mo old could possibly convey. For everyone else, BIG BIG smiles. He is loving the attention. He has found his right hand and thinks it is AWESOME! The left one? Doesn't care...righty is magical.
Ryder can tolerate almost any torture but hates being cold -- chlorhexidine bath wipes = brrrr and cries. But we do like a staph-free baby. He is loving staring at himself in the mirror this week too - less with the Sipap on but at least the sight of the mask doesn't make him wail anymore. I really wish I could know exactly what he thinks of Addy...
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| Addy, please don't pick up your brother, K? Good thing those chairs allow you to strap baby down... |
To my favorite hubby...happy #8! So glad we got to sneak in a date night amidst the ICU time, however weird it is to have an ICU nurse babysit...in the ICU. Thank you for being you and thank you for: letting me change the sheets as much as I want, giving the dogs baths, always letting me have my 1 favorite wine glass and for never asking where the cookies are after I make the cookie dough. Thanks most of all for taking chances with me...
Goodnight, from room 16...beep beep beep....beep beep
Saturday, June 16, 2012
Ain't Nothing Gonna Break My Stride...
Ryder - seriously stop this atelectasis! Ryder has been looking great, bright-eyed at all hours as any baby should be, but his chest xrays have been a little less than stellar. After no success with a variety of breathing treatments he has been wearing his elephant nose for the last few hours (the SiPap)...and SUCCESS! Finally a giant improvement in the atelectasis!!
Guessing he will spend a little time on and off this for the next few days but that's ok, just gonna keep on moving...
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| Handsome, even in xray form. |
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| Snuggling with bunny. |
Thursday, June 14, 2012
Just. Keep. Breathing.
Ryder is off the vent now as of 12-ish hours ago...little rough early this afternoon but calmed down, liked a little more milrinone and doing pretty well this evening. Thinking his first official grandma-holding helped! Lungs still sound a little "coarse" but the fact that there is sound on the right means the lung is still up folks!! Now - to finish these clinic notes...
Ryder, just keep up that breathing buddy! Don't worry, I will be holding my breath...
Ryder, just keep up that breathing buddy! Don't worry, I will be holding my breath...
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| Before. |
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| After. (Increased cuteness due to a combination of missing endotracheal tube, hippo outfit and dinosaur slippers.) |
Monday, June 11, 2012
Re-re-intubation
Ryder had a rough go last night...we were hoping to scoot him through without more interventions but Ryder's 02 sats were low, he was bradycardic and generally not doing well overnight. A CXR showed now his entire right lung was down. So, he was reintubated. It took a while but his oxygen sats finally came up with less oxygen through the ventilator...
This morning he is back on a little milrinone, back on his sleepy meds, and getting a lot of aggressive pulmonary "hygeine" - various manuevers to help open/clear his airways. Why did this happen, medically speaking? Not sure yet, the attending thinks he may have bronchomalacia which is basically when the airways aren't sturdy enough - thus when he's on a lot of air pressure through them he does fine, but when he isn't they collapse down easily. He will be getting a test tomorrow to see if that looks to be the case. Not sure if it is, what the next step will be.
For now he is supposed to be resting. He is still fighting though...figuratively of course but also literally...boy are his little arms strong now - I put some basketball socks on his hands so he can't pull out his tubes and he is trying to work his way out of a swaddle...not fun to see him uncomfortable but am glad to see he wants to get out of this mess, too.
Hoping to see THIS version of the little warrior back soon...until then, please help us pray for stable airways and a strong baby boy.
Congrats to Ross who won the Daniel Scagliotti Teaching Award (Educator of the Year) @ Children's Mercy today and Ryder, who of course won the Sweetest Baby on the Ventilator Award @ Children's Mercy (awarded by Mommy). Love you both so much!
This morning he is back on a little milrinone, back on his sleepy meds, and getting a lot of aggressive pulmonary "hygeine" - various manuevers to help open/clear his airways. Why did this happen, medically speaking? Not sure yet, the attending thinks he may have bronchomalacia which is basically when the airways aren't sturdy enough - thus when he's on a lot of air pressure through them he does fine, but when he isn't they collapse down easily. He will be getting a test tomorrow to see if that looks to be the case. Not sure if it is, what the next step will be.
For now he is supposed to be resting. He is still fighting though...figuratively of course but also literally...boy are his little arms strong now - I put some basketball socks on his hands so he can't pull out his tubes and he is trying to work his way out of a swaddle...not fun to see him uncomfortable but am glad to see he wants to get out of this mess, too.
Hoping to see THIS version of the little warrior back soon...until then, please help us pray for stable airways and a strong baby boy.
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| Ryder last Thursday - starting him early - Ryder, can you say "Go cards?" |
Sunday, June 10, 2012
Friday sucked.
It's been so long since we had a negative report, but Ryder didn't have a great Friday...
We have been fortunate enough that one of us it able to be at the hospital the good majority of the time...sometimes working (or sleeping) but at least here. This is for 2 reasons: 1) To see Ryder and 2) To keep from getting a phone call. It has worked well so far- I think we have only gotten maybe 2 other phone calls in the last 103 days...about 40 minutes after I left the hospital Friday morning Ryder was satting only in the 50s and not looking so good. A CXR showed his right middle lobe (lung) was collapsed (atelectasis). This is probably owing to a nice dose of morphine and extra ativan he got the night before, because really Thursday night was good - he drank almost an ounce out of his bottle.
He had to go back on bipap and milrinone for the morning to early afternoon but later in the day his CXR looked better, oxygen was higher and a new ECHO, ultrasound, etc. showed there was nothing else going on. That night, worse CXR again so back on bipap. He doesn't like bipap though so after 2 hours of screaming it was removed. One thing about warriors is that they like to do things their own way, and he was not feeling the bipap. So, yesterday he came back off milrinone and started some more breathing treatments and back on feeds. The CXR is still not looking the best, but he is overall doing much better.
Grandpa came up to visit this weekend to keep Addy entertained while we were short-staffed (work) and she had a blast eating pancakes and swimming in a rather ginormous baby pool that now takes up most of our deck. She LOVES it! And - I think Grandpa may be headed to Target tonight to get his own copy of Tangled...it's ok dad, it's seriously a good movie!
Overall, today has been good...as you can see...despite Ryder getting a round of vaccines!!
Will be praying Ryder works his way through his breathing treatments and we can get that little lung opened back up...with only 1/2 a heart, it's better not to have 3/4 of a lung!!
We have been fortunate enough that one of us it able to be at the hospital the good majority of the time...sometimes working (or sleeping) but at least here. This is for 2 reasons: 1) To see Ryder and 2) To keep from getting a phone call. It has worked well so far- I think we have only gotten maybe 2 other phone calls in the last 103 days...about 40 minutes after I left the hospital Friday morning Ryder was satting only in the 50s and not looking so good. A CXR showed his right middle lobe (lung) was collapsed (atelectasis). This is probably owing to a nice dose of morphine and extra ativan he got the night before, because really Thursday night was good - he drank almost an ounce out of his bottle.
He had to go back on bipap and milrinone for the morning to early afternoon but later in the day his CXR looked better, oxygen was higher and a new ECHO, ultrasound, etc. showed there was nothing else going on. That night, worse CXR again so back on bipap. He doesn't like bipap though so after 2 hours of screaming it was removed. One thing about warriors is that they like to do things their own way, and he was not feeling the bipap. So, yesterday he came back off milrinone and started some more breathing treatments and back on feeds. The CXR is still not looking the best, but he is overall doing much better.
Grandpa came up to visit this weekend to keep Addy entertained while we were short-staffed (work) and she had a blast eating pancakes and swimming in a rather ginormous baby pool that now takes up most of our deck. She LOVES it! And - I think Grandpa may be headed to Target tonight to get his own copy of Tangled...it's ok dad, it's seriously a good movie!
Overall, today has been good...as you can see...despite Ryder getting a round of vaccines!!
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| My babies!! |
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| No way any other big sister was THIS happy to hold her baby brother. |
Tuesday, June 5, 2012
Ninety-seven days.
Ryder James Newman, hospital day number ninety-seven.
Today Ryder smiled big at his daddy, and his nurse. He was able to stay just on 2.5 liters of oxygen flow. He is now on only one IV drip, his milrinone, which is down to 0.2 from 1...going down slowly every other day or so. He worked on his head control, played with his toys and rocked in his rocker. He also drank 16 ml out of a bottle - that is just over 3 teaspoons, not a lot unless you take into account that that's almost 3 times as much as he tried the last time
...and I missed all of it.
Going back to work is really sad sometimes. So hard not to be a part of that little life for so long, especially when he is still in the hospital, in the ICU, for the past ninety-seven days. But life moves on and eventually you have to go with it. I couldn't imagine we would be here so long, but it was difficult to imagine anything beyond the first few minutes initially. Eventually, you can see past that to hours, then after some rough patches, you can imagine you will get at least 1 more day. Some days go by, some good, some not quite so and then it's been a week, then 2. Then sometimes an entire week has been "stable", and a month goes by. And two months. Then three months. I remember walking down the hall, first noticing the rooms with piles of stuffed animals, clothes hanging on the cribs. Babies who had been here way longer than I ever thought Ryder would be...so long that this was their home...and babies come with a lot of stuff. So it seemed like it would be better not to bring stuff, not to get comfortable because we weren't going to be here that long. But as months go by, stuff comes too - toys, stuffed animals, blankies, bouncy chair, boppy pillow, clothes. Along the way our stuff came too - chargers, jackets, Addy's toys. And now we are one of those families, the ones that live here...that work out of the room, or hurry back here from work hoping everything will still be ok when we get back...and ok tomorrow...on day ninety-eight.
So, I brought my own pillow tonight. Why not? Everyone else knows we live here so may as well not pretend and bring more stuff. I am going to sleep tonight (after Ryder stops crying from his breathing treatment) being greatful we are in fact still here, because we could have been a family who already had to bring all the stuff back home...without that little life to go with it. Goodnight sweet baby boy, my little warrior. Thank you for saving a smile for me tonight, and I hope to see another after work tomorrow!
Today Ryder smiled big at his daddy, and his nurse. He was able to stay just on 2.5 liters of oxygen flow. He is now on only one IV drip, his milrinone, which is down to 0.2 from 1...going down slowly every other day or so. He worked on his head control, played with his toys and rocked in his rocker. He also drank 16 ml out of a bottle - that is just over 3 teaspoons, not a lot unless you take into account that that's almost 3 times as much as he tried the last time
...and I missed all of it.
Going back to work is really sad sometimes. So hard not to be a part of that little life for so long, especially when he is still in the hospital, in the ICU, for the past ninety-seven days. But life moves on and eventually you have to go with it. I couldn't imagine we would be here so long, but it was difficult to imagine anything beyond the first few minutes initially. Eventually, you can see past that to hours, then after some rough patches, you can imagine you will get at least 1 more day. Some days go by, some good, some not quite so and then it's been a week, then 2. Then sometimes an entire week has been "stable", and a month goes by. And two months. Then three months. I remember walking down the hall, first noticing the rooms with piles of stuffed animals, clothes hanging on the cribs. Babies who had been here way longer than I ever thought Ryder would be...so long that this was their home...and babies come with a lot of stuff. So it seemed like it would be better not to bring stuff, not to get comfortable because we weren't going to be here that long. But as months go by, stuff comes too - toys, stuffed animals, blankies, bouncy chair, boppy pillow, clothes. Along the way our stuff came too - chargers, jackets, Addy's toys. And now we are one of those families, the ones that live here...that work out of the room, or hurry back here from work hoping everything will still be ok when we get back...and ok tomorrow...on day ninety-eight.
So, I brought my own pillow tonight. Why not? Everyone else knows we live here so may as well not pretend and bring more stuff. I am going to sleep tonight (after Ryder stops crying from his breathing treatment) being greatful we are in fact still here, because we could have been a family who already had to bring all the stuff back home...without that little life to go with it. Goodnight sweet baby boy, my little warrior. Thank you for saving a smile for me tonight, and I hope to see another after work tomorrow!
Prayers for constant loving arms to always be holding you when we are out of reach.
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