We're so happy to be home! Even though it's really hard right now (mostly because of attitude and exhaustion).
Saturday, November 10, 2018
First Weekend Home Post-op
We're so happy to be home! Even though it's really hard right now (mostly because of attitude and exhaustion).
Friday, November 9, 2018
Day 22 Post-op Updates
7:00pm update:
We're home! We're finally home!
The discharge process was excruciating and I'm about to go to bed and leave Job to play with Grandma and Grandpa or Daddy or anyone else.
But how amazingly adorable and sweet was our welcome home signage? We have the best friends.
3:30pm update:
I remember when I was pregnant with Job and talking to another mom at our homeschool co-op whose daughter had been at SCH multiple times. She said one of the things she wished she had known about hospitalizations was how long discharges take and therefore was warning me so that I would set my expectations accordingly.
We've had some long discharge days before but today takes the cake. I don't understand why the paperwork is taking so long. Every other nurse has been able to get it ready before rounds so that we just have to get the attending to check off... but not today.
Job is melting down worse than I could have expected.
12:40pm update:
We get to go home!!!! The attending needs to come assess Job and then the nurse needs to get our discharge paperwork together and we have to grab meds. Yay! Yay! Yay!
8:00am update:
Job had a pretty good night. He hates sleeping in his crib and tossed and turned but didn't have any increased work of breathing or desaturation episodes. Now we wait til rounds (~12pm) to hear the official word on discharge.
We're home! We're finally home!
The discharge process was excruciating and I'm about to go to bed and leave Job to play with Grandma and Grandpa or Daddy or anyone else.
But how amazingly adorable and sweet was our welcome home signage? We have the best friends.
3:30pm update:
I remember when I was pregnant with Job and talking to another mom at our homeschool co-op whose daughter had been at SCH multiple times. She said one of the things she wished she had known about hospitalizations was how long discharges take and therefore was warning me so that I would set my expectations accordingly.
We've had some long discharge days before but today takes the cake. I don't understand why the paperwork is taking so long. Every other nurse has been able to get it ready before rounds so that we just have to get the attending to check off... but not today.
Job is melting down worse than I could have expected.
12:40pm update:
We get to go home!!!! The attending needs to come assess Job and then the nurse needs to get our discharge paperwork together and we have to grab meds. Yay! Yay! Yay!
8:00am update:
Job had a pretty good night. He hates sleeping in his crib and tossed and turned but didn't have any increased work of breathing or desaturation episodes. Now we wait til rounds (~12pm) to hear the official word on discharge.
Thursday, November 8, 2018
Day 21 Post-op Updates
10:00pm update:
Job and I were cuddling, trying to get a nap in and I felt all this wet stuff all over us. I thought it was his feeding tube leaking and started to clean it up, but once I turned on the light I saw it was blood. He yanked out his IV that was placed during the surgery today. They were leaving it in on the chance they needed access tonight but he decided he didn't need it.
So he got a bath, which he really liked, at least in part because it allowed him to sneak as many drops of water into his mouth as he could manage. He kept lifting this toy up above his head so it would drip water all down his face, into his mouth, since we wouldn't let him just take actual sips. Sneaky sneaky.
Annnddddd I packed up a bunch of our things and put them in the car.
6:00pm update:
I don't think I've never fully explained what the procedure today did.
So to back up, in April 2016, at five days old, Job had the Norwood surgery to reconfigure his circulation and basically keep him alive for future interventions. The nerve to his left vocal cord wraps around the aorta so it's very common (75%!!) for kids undergoing the Norwood to have some impact to the laryngeal nerves. Everything is just too small and too intertwined to always avoid traumatizing that nerve, try as they might.
If the nerve doesn't regain function within a year then it likely won't, and we're all pretty positive that Job's left vocal cord never regained function (although the formal studies we did to establish this were only done in his first year of life - not recently enough to definitively determine that it was still absolutely paralyzed).
Your vocal cords vibrate when you turn them on and essentially meet in the middle of your throat to produce sound when they touch and also when you swallow, to prevent food from slipping into your airway. A cough is one of your body's mechanisms to protect your airway, so when Job was trying to swallow but his vocal cords weren't able to move to meet each other because of the trauma of intubation, he coughed and choked on purees and thickened juices. If food/drink does go down the airway into the lungs this is called aspiration and can be terribly dangerous. Food and drink particles do not belong in the lungs!!
Even if Job's left vocal cord remained paralyzed, it didn't entirely matter because Job had compensated to gain enough function to learn to swallow. We're assuming that his right vocal cord was just over compensating and going past midline to reach/almost reach the left vocal cord and protect his airway enough when he swallowed. His voice was raspy and weak but present enough for some use and we were hopeful intensive speech therapy would help him learn to compensate further.
He wasn't aspirating, though I had some concerns about the quality of his swallow, and his quickly declining heart took precedence this summer over an Oto follow up.
Fast forward to extubation following transplant and it was immediately apparent that Job's vocal cords weren't quite working the way that they had before transplant. Speech came and did a lot of inpatient work to assess his swallow, and for a few days while still on hi-flow Job was cleared for purees. Once off the support of the positive pressure of hi-flow, forcing good air into his lungs, Job couldn't handle purees and lost that privilege to eat them (because he was just aspirating them!).
While we were hopeful that his swallow would improve each day following extubation, it actually got worse and thus Oto got involved and did their scope Wednesday and then this procedure today. (Which is just amazing timing and I am so so so grateful they made room in their schedule.)
So, Job's vocal cords weren't meeting to produce sound or protect his swallow, which necessitated an injection laryngoplasty and bronchoscopy. Essentially they went in and injected a gel into Job's left vocal cord to plump it up so that the slowly improving right vocal cord wouldn't have as far to travel to meet it. Even if the left side was truly still paralyzed (which we think it was), it now is closer to midline. The pictures taken in the procedure show a stunning improvement - I'm shocked! But his voice is now working better than it has since before transplant (which again really means before intubation) and that's a good indication he can again be able to swallow safely.
Here's the mark they made for where to make the injection:
The concern was that, if they injected too much gel, the airway could be obstructed because the left vocal cord would be too plumped up. They then err on the side of caution and sometimes don't inject enough gel to make a difference.
The gel used today only has a lifetime of about 2 to 3 months effectiveness. This could buy the right vocal cord enough time to improve and then continue to overcompensate for the left side as we think it was before transplant. Or, the right side might need more time or never recover, so if in 2 or 3 months Job's voice and swallow suddenly worsen and then we'll come in for another procedure but this time (since they know the correct amount of gel to insert) they'll use a longer acting gel that lasts 6 to 9 months. And if, after that extra amount of time, the right vocal cord doesn't regain pre-transplant function, we'll do a more invasive surgery to permanently fix the left vocal cord to a more midline position. We might also eventually do a nerve innervation.
We really want Job to have voice and swallow. He was so sad already after a mere two weeks of not having either, and I just couldn't wait indefinitely before intervening when his quality of life was so affected. Speech couldn't help therapeutically and regaining function without intervention could have taken up to a year.
He is still NPO until he gets a videofluoroscopy (VFSS) which is scheduled for next Thursday. That means, we go home on the feed pump and stay on it probably though January until he is able to safely swallow enough food and drink for full nutrition, if he can indeed regain that ability. He may be able to eat or drink some things as early as Thursday if his VFSS goes well and shows no aspiration, but he'll be very limited in quantity until he regains strength, which is a very gradual process.
The surgery done today is usually performed outpatient but because Job is at such danger if he gets an infection because of his immunosuppression meds, we'll spend the night for observation.
Which puts our hopeful discharge at TOMORROW.
3:00pm update:
This morning was really hard. Job didn't sleep well last night, to say the least, and he was grumpy grumpy grumpy this morning. It was really hard to wait for 9:30, when we expected a team from the OR to come get Job... and even harder to wait until 10:30 when they did show up... and then the ride through the halls to the OR was fun... but the hour wait in the PACU pre-op was really really not fun. The iPad was distracting for a few minutes, but not nearly long enough. I've tried so hard these past months to get Job interested in electronics so he could rest, when he had HLHS, or so that he could just relax and recover while he's been in the hospital, but so such luck.
It's so tempting to lose my patience with Job when he's so irritated and inconsolable, but the poor kid doesn't fully understand what's going on, just that he's not comfortable and I won't give him what he asks for. I've developed quite the arsenal of "distract kid!" tricks over the years, but Job is super bored of all of my efforts these past two weeks in particular. He was not having it this morning.
He finally went back to the OR at 11:45 and I rushed to the cafeteria for food and the laundry room to start a load and then they suddenly paged me to talk to the surgeon, so I rushed down to the consult room... and then while finishing talking to Dr. Parikh, I got the call that the CPR Training Team was a bit early and already waiting in Job's room for me, so I rushed back up there to do my mandatory training. And as I was finishing that, they paged me to please come console Job in the PACU, so I rushed back down there.
A mere 90 minutes later and there was an immediate difference in Job's voice! He was so much clearer and SO MUCH louder with his sounds! He was fussy as could be but glad to see me. And then as we were waiting for sign off, a nurse on break within eyeshot started drinking his Diet Coke and Job just lost it. He wanted the drink so badly and was calling for it and signing for it and crying for it and pointing at it. Ahhhhhh! I finally asked our nurse to please ask that nurse to go drink his contraband elsewhere, where Job couldn't see him.
We got back to the room relatively quickly, all things considered, and I tried to get Job to nap without luck... until just before a team of photographers came by to take pictures of Job and whichever other kids on the floor to use for the annual SCH shareholders report. He's on his own timeline that exactly never matches up with my timeline.
Job and I were cuddling, trying to get a nap in and I felt all this wet stuff all over us. I thought it was his feeding tube leaking and started to clean it up, but once I turned on the light I saw it was blood. He yanked out his IV that was placed during the surgery today. They were leaving it in on the chance they needed access tonight but he decided he didn't need it.
So he got a bath, which he really liked, at least in part because it allowed him to sneak as many drops of water into his mouth as he could manage. He kept lifting this toy up above his head so it would drip water all down his face, into his mouth, since we wouldn't let him just take actual sips. Sneaky sneaky.
Annnddddd I packed up a bunch of our things and put them in the car.
6:00pm update:
I don't think I've never fully explained what the procedure today did.
So to back up, in April 2016, at five days old, Job had the Norwood surgery to reconfigure his circulation and basically keep him alive for future interventions. The nerve to his left vocal cord wraps around the aorta so it's very common (75%!!) for kids undergoing the Norwood to have some impact to the laryngeal nerves. Everything is just too small and too intertwined to always avoid traumatizing that nerve, try as they might.
If the nerve doesn't regain function within a year then it likely won't, and we're all pretty positive that Job's left vocal cord never regained function (although the formal studies we did to establish this were only done in his first year of life - not recently enough to definitively determine that it was still absolutely paralyzed).
Your vocal cords vibrate when you turn them on and essentially meet in the middle of your throat to produce sound when they touch and also when you swallow, to prevent food from slipping into your airway. A cough is one of your body's mechanisms to protect your airway, so when Job was trying to swallow but his vocal cords weren't able to move to meet each other because of the trauma of intubation, he coughed and choked on purees and thickened juices. If food/drink does go down the airway into the lungs this is called aspiration and can be terribly dangerous. Food and drink particles do not belong in the lungs!!
Even if Job's left vocal cord remained paralyzed, it didn't entirely matter because Job had compensated to gain enough function to learn to swallow. We're assuming that his right vocal cord was just over compensating and going past midline to reach/almost reach the left vocal cord and protect his airway enough when he swallowed. His voice was raspy and weak but present enough for some use and we were hopeful intensive speech therapy would help him learn to compensate further.
He wasn't aspirating, though I had some concerns about the quality of his swallow, and his quickly declining heart took precedence this summer over an Oto follow up.
Fast forward to extubation following transplant and it was immediately apparent that Job's vocal cords weren't quite working the way that they had before transplant. Speech came and did a lot of inpatient work to assess his swallow, and for a few days while still on hi-flow Job was cleared for purees. Once off the support of the positive pressure of hi-flow, forcing good air into his lungs, Job couldn't handle purees and lost that privilege to eat them (because he was just aspirating them!).
While we were hopeful that his swallow would improve each day following extubation, it actually got worse and thus Oto got involved and did their scope Wednesday and then this procedure today. (Which is just amazing timing and I am so so so grateful they made room in their schedule.)
So, Job's vocal cords weren't meeting to produce sound or protect his swallow, which necessitated an injection laryngoplasty and bronchoscopy. Essentially they went in and injected a gel into Job's left vocal cord to plump it up so that the slowly improving right vocal cord wouldn't have as far to travel to meet it. Even if the left side was truly still paralyzed (which we think it was), it now is closer to midline. The pictures taken in the procedure show a stunning improvement - I'm shocked! But his voice is now working better than it has since before transplant (which again really means before intubation) and that's a good indication he can again be able to swallow safely.
Here's the mark they made for where to make the injection:
The concern was that, if they injected too much gel, the airway could be obstructed because the left vocal cord would be too plumped up. They then err on the side of caution and sometimes don't inject enough gel to make a difference.
The gel used today only has a lifetime of about 2 to 3 months effectiveness. This could buy the right vocal cord enough time to improve and then continue to overcompensate for the left side as we think it was before transplant. Or, the right side might need more time or never recover, so if in 2 or 3 months Job's voice and swallow suddenly worsen and then we'll come in for another procedure but this time (since they know the correct amount of gel to insert) they'll use a longer acting gel that lasts 6 to 9 months. And if, after that extra amount of time, the right vocal cord doesn't regain pre-transplant function, we'll do a more invasive surgery to permanently fix the left vocal cord to a more midline position. We might also eventually do a nerve innervation.
We really want Job to have voice and swallow. He was so sad already after a mere two weeks of not having either, and I just couldn't wait indefinitely before intervening when his quality of life was so affected. Speech couldn't help therapeutically and regaining function without intervention could have taken up to a year.
He is still NPO until he gets a videofluoroscopy (VFSS) which is scheduled for next Thursday. That means, we go home on the feed pump and stay on it probably though January until he is able to safely swallow enough food and drink for full nutrition, if he can indeed regain that ability. He may be able to eat or drink some things as early as Thursday if his VFSS goes well and shows no aspiration, but he'll be very limited in quantity until he regains strength, which is a very gradual process.
The surgery done today is usually performed outpatient but because Job is at such danger if he gets an infection because of his immunosuppression meds, we'll spend the night for observation.
Which puts our hopeful discharge at TOMORROW.
3:00pm update:
This morning was really hard. Job didn't sleep well last night, to say the least, and he was grumpy grumpy grumpy this morning. It was really hard to wait for 9:30, when we expected a team from the OR to come get Job... and even harder to wait until 10:30 when they did show up... and then the ride through the halls to the OR was fun... but the hour wait in the PACU pre-op was really really not fun. The iPad was distracting for a few minutes, but not nearly long enough. I've tried so hard these past months to get Job interested in electronics so he could rest, when he had HLHS, or so that he could just relax and recover while he's been in the hospital, but so such luck.
It's so tempting to lose my patience with Job when he's so irritated and inconsolable, but the poor kid doesn't fully understand what's going on, just that he's not comfortable and I won't give him what he asks for. I've developed quite the arsenal of "distract kid!" tricks over the years, but Job is super bored of all of my efforts these past two weeks in particular. He was not having it this morning.
He finally went back to the OR at 11:45 and I rushed to the cafeteria for food and the laundry room to start a load and then they suddenly paged me to talk to the surgeon, so I rushed down to the consult room... and then while finishing talking to Dr. Parikh, I got the call that the CPR Training Team was a bit early and already waiting in Job's room for me, so I rushed back up there to do my mandatory training. And as I was finishing that, they paged me to please come console Job in the PACU, so I rushed back down there.
A mere 90 minutes later and there was an immediate difference in Job's voice! He was so much clearer and SO MUCH louder with his sounds! He was fussy as could be but glad to see me. And then as we were waiting for sign off, a nurse on break within eyeshot started drinking his Diet Coke and Job just lost it. He wanted the drink so badly and was calling for it and signing for it and crying for it and pointing at it. Ahhhhhh! I finally asked our nurse to please ask that nurse to go drink his contraband elsewhere, where Job couldn't see him.
We got back to the room relatively quickly, all things considered, and I tried to get Job to nap without luck... until just before a team of photographers came by to take pictures of Job and whichever other kids on the floor to use for the annual SCH shareholders report. He's on his own timeline that exactly never matches up with my timeline.
Wednesday, November 7, 2018
Day 20 Post-op Updates
9:00pm update:
Job got another shower and we replaced his replicare and tagaderm on his cheek for his NG tube, which is at least a two person job. I've given all of his meds and feeds on time. I set up Home Care services (delivery of his medical supplies). I met the woman who set up the SCH transplant program. Dr. Nuri came by to check on us. I signed consent for tomorrow's surgery. I tried to keep Job somewhat entertained.
I started putting clothes on Job because he was getting cold (and I couldn't handle the heat being so high in our room) a day or two ago. The problem is that he thinks that means we should be going outside. He found his hat today and put it on and spent the next hour trying to get out the door or window.
1:00pm update:
Hallelujah! Oto made room for us on their schedule. Get this: for TOMORROW!! I thought we'd have to wait for mid to late week next week! Yay yay yay!
10:30 start time, so probably rolling to the OR around 9:00.
Child Life spent probably at least 90 minutes playing with Job while I talked to providers. It was so good for Job to get to engage with someone besides me and it was wonderful to not juggle kid and consent forms. Although, I have to say, in all the appointments we have had here, I have never once felt chastised for needing to take a moment away from my conversation with ___ provider to help/discipline/protect/guide ___ child. They do a lovely Job of including even fussy Job in our conversations about anesthesia risks, for example.
12:00pm update:
I started my 24 hour care just now, after rounds. So I have to ring for the nurse to bring me meds at all of our med times (1pm, 5pm, 9pm, 9am - easiest med schedule ever!) and then ring for her to tell her I started a feed (3pm, 6pm, 9pm, 12am, 3am, 6am, 9am, 12pm). When she brings the meds, I have to tell which ones are due and how much and, depending on the nurse, what the med is for. I change all diapers and bedding and clothes and all that regular ole kid stuff. I think I also have to change his dressings, but we'll see about that. Basically, they want proof I can keep him alive.
His transplant meds are very time critical so I have to be very prompt with my call button.
10:00am update:
'Roid rage. 😳😳😳
We'll be playing and having fun and then Job will get intensely and irrationally angry with me. Really really really angry.
He feels better in so many other ways - he's pink and breathing easily! It's amazing to see such a drastic change so quickly.
He's quickly regaining his baseline gross/fine motor skills and all around getting back to himself (besides the abrupt mood changes) and just looks really healthy.
Job got another shower and we replaced his replicare and tagaderm on his cheek for his NG tube, which is at least a two person job. I've given all of his meds and feeds on time. I set up Home Care services (delivery of his medical supplies). I met the woman who set up the SCH transplant program. Dr. Nuri came by to check on us. I signed consent for tomorrow's surgery. I tried to keep Job somewhat entertained.
I started putting clothes on Job because he was getting cold (and I couldn't handle the heat being so high in our room) a day or two ago. The problem is that he thinks that means we should be going outside. He found his hat today and put it on and spent the next hour trying to get out the door or window.
1:00pm update:
Hallelujah! Oto made room for us on their schedule. Get this: for TOMORROW!! I thought we'd have to wait for mid to late week next week! Yay yay yay!
10:30 start time, so probably rolling to the OR around 9:00.
Child Life spent probably at least 90 minutes playing with Job while I talked to providers. It was so good for Job to get to engage with someone besides me and it was wonderful to not juggle kid and consent forms. Although, I have to say, in all the appointments we have had here, I have never once felt chastised for needing to take a moment away from my conversation with ___ provider to help/discipline/protect/guide ___ child. They do a lovely Job of including even fussy Job in our conversations about anesthesia risks, for example.
12:00pm update:
I started my 24 hour care just now, after rounds. So I have to ring for the nurse to bring me meds at all of our med times (1pm, 5pm, 9pm, 9am - easiest med schedule ever!) and then ring for her to tell her I started a feed (3pm, 6pm, 9pm, 12am, 3am, 6am, 9am, 12pm). When she brings the meds, I have to tell which ones are due and how much and, depending on the nurse, what the med is for. I change all diapers and bedding and clothes and all that regular ole kid stuff. I think I also have to change his dressings, but we'll see about that. Basically, they want proof I can keep him alive.
His transplant meds are very time critical so I have to be very prompt with my call button.
10:00am update:
'Roid rage. 😳😳😳
We'll be playing and having fun and then Job will get intensely and irrationally angry with me. Really really really angry.
He feels better in so many other ways - he's pink and breathing easily! It's amazing to see such a drastic change so quickly.
He's quickly regaining his baseline gross/fine motor skills and all around getting back to himself (besides the abrupt mood changes) and just looks really healthy.
PT came by and was really happy with his functional abilities. He'll build up stamina with time, but he's doing great. He walked to the fridge several times and tried to open it to get food, which was heartbreaking but impressive.
Tuesday, November 6, 2018
Day 19 Post-op
6:00pm update:
My cousin and aunt came and visited with us for a bit this evening. They got Job laughing while I signed consent for his surgery tomorrow morning.
Job got a shower today, since his PICC line is now out. Woo hoo! He smells so fresh and clean but he also loved it. He just sat there, spraying warm water over himself for about 45 minutes.
He's pretty grumpy again, if not just outright mad, so any and every distraction is a balm to both Job and I. I think it's just going to be really hard until he gets to go home. And until he's off steroids.
3:00pm update:
Today has been exhausting! (And it's not even finished yet!) Every day down on the floor has been, actually, which amuses me because to even be on the floor Job has to be doing pretty well. When he was the sickest was actually the most relaxing, at least physically speaking, because I just sat next to him and held his hand. But here I'm engaging with him or talking to providers with hardly a spare moment. Job crashed on the couch this afternoon and my plan was to nap with him but I ended up doing an extra training instead. I'm getting so many things checked off! It's a good distraction so I don't focus on my disappointment about his swallow.
12:00pm update:
Oto came by and scoped Job's vocal chords.
The left doesn't move at all and the right hardly moves.
I was holding Job in my lap, holding his arms down, and watching the scope and it was astounding how very wide the gap between his chords are. It's no wonder he's aspirating so badly and his voice is so so very faint.
It's such a dramatic problem that Oto had no problem quickly recommending we do a procedure as soon as they can fit Job into the OR - provided Transplant and Speech sign off on it.
It's devastating that this is such a problem. But it's probably also a bit vindicating because I do feel like I had to really insist Oto get involved and we not write this problem off as a cold virus.
I'm just so so sad today. I want to be grateful we caught it and most of all grateful that Job got a transplant and not begrudge intubation for "ruining" Job's swallow and voice but right now I'm struggling to let go of my bitterness.
Monday, November 5, 2018
Day 18 Post-op Updates
4:30pm update:
So many people came by today! Here's the list (so far):
-the resident, for his daily assessment
-the nurse, every four hours for vitals and two blood draws and one dressing change and probably several other check ins
-the team, for rounds
-SLP, for a swallow study
-a sonographer, for an echo
-Child Life, to check in and then again to bring new toys I requested
-OT, for a session
-Nutrition, to make a plan for Job's tube feeds
-one of our two primary transplant nurse coordinators, for a training
-one of our four primary transplant pharmacists, for a training
-the IV team, to remove Job's PICC line
-someone on the patient experience team, to take a survey on our experience in the CICU
-the attending, for his daily assessment and to answer any questions I have
-a fellow from Otolaryngology who was quick to order a scope after listening to Job
3:16pm update:
Over the weekend I started giving Job's meds and starting and stopping his feeds and taking his vitals. These are all things I will get to do daily at home.
I had one training on Friday and two more today and have two scheduled for tomorrow with the transplant nurse coordinators and with pharmacy. Can I recognize signs of rejection? Do I know the side effects of his various meds? And so on. I have a binder and flashcards and all the notes I've been taking on transplant since June, so I've been studying away when I'm not playing with Job. I read and reread the binder so many times this summer that I did feel pretty comfortable about these transplant specific things, but I'm really appreciating all this hands on training too.
Well, except for the things I've already done before. Do I really need to do a lovenox injection training again? I did it last time we needed anticoagulation and I've been giving all his injections this weekend. Do I really have to take out his NG tube and reinsert it? And so on. I understand why hospital policy exists buuutttt I also really don't want to abide by it every time when *I* think it's excessive. We'll see what flexibility they will allow me - it will probably depend on how the nurses think I'm doing with Job's care.
Eventually this week I'll have to do a 24 hour care, where I do all of Job's cares for that time period to show I can really take care of him at home.
12:06pm update:
Job had an even more disastrous SLP assessment today. His swallow is getting worse and worse as each day goes on. But now we're going to get Otolaryngology involved, which I wanted to do last year and have really wanted to do through this hospitalization. So I'm disappointed but trying to stay hopeful. Oto can do all sorts of things to optimize Job's swallow if needed and can give the msot clear answer of what is going on.
I've wanted them to take a look at Job's throat all year because he's never quite been right following his vocal cord paralysis during the Norwood surgery in April 2016. He did learn to eat and drink well, but he's had weird swallow/vomiting issues and he's quite speech delayed as well. But when I started asking for Oto involvement this summer, Job's heart started failing even more quickly so that obviously took precedent.
When he started coughing and especially when he started aspirating, I started asking again. I'd love to do whatever we can while inpatient because outpatient care is harder to arrange and happens more slowly... but if they couldn't see us inpatient for a week then I'd rather go home and do that outpatient.
So the thought it that his left vocal fold was paralyzed but his right vocal fold was overcompensating and worked to close off his airway from aspiration while eating these past two years. He learned how to make do.
But during intubation, the vent tube was down his throat pushing both vocal cords to the sides. So even after he was extubated, his right vocal fold still has to recover from that trauma.
Child Life brought by new toys, so we're enjoying those too. The same toys in the same room for the same two days was getting a little stale. I didn't realize how much I take environment for granted. When we're at home our environment is constantly changing so even though our toys aren't, we don't get as bored as quickly with the same toys.
And I was just thinking about the nature of contentment because I think this week will be a little hard for me as I long to discharge but still need to jump through the hoops of all the training we need to do.
9:00am update:
Another area where I've been receiving frequent questions is regarding Job's cold.
It almost seems that Job didn't really have a cold. His only symptom was coughing and those couple days of needing extra oxygen support.
His cold hardly affected him other than to make his providers wear gowns and masks and to not allow the big boys to visit.
His doctors said that his response (non-response?) to this rhino virus is really really good news because he should have been super set back because he was so immunosuppressed.
Since he was strong enough to handle it while so immunosuppressed, he should be pretty strong and safe this winter (relatively speaking) because he'll be on less immunosuppression (probably).
We all saw him getting sicker and needing a transplant this summer, but so many kids gets so much sicker as they wait for a donor match and are then weaker going into the transplant and struggle to recover from surgery quickly and then also struggle to recover from a cold. This is one of the reasons SCH works so hard to list kids "early" so that they perhaps get their match "early," before they're really really sick and weak.
So many people came by today! Here's the list (so far):
-the resident, for his daily assessment
-the nurse, every four hours for vitals and two blood draws and one dressing change and probably several other check ins
-the team, for rounds
-SLP, for a swallow study
-a sonographer, for an echo
-Child Life, to check in and then again to bring new toys I requested
-OT, for a session
-Nutrition, to make a plan for Job's tube feeds
-one of our two primary transplant nurse coordinators, for a training
-one of our four primary transplant pharmacists, for a training
-the IV team, to remove Job's PICC line
-someone on the patient experience team, to take a survey on our experience in the CICU
-the attending, for his daily assessment and to answer any questions I have
-a fellow from Otolaryngology who was quick to order a scope after listening to Job
3:16pm update:
Over the weekend I started giving Job's meds and starting and stopping his feeds and taking his vitals. These are all things I will get to do daily at home.
I had one training on Friday and two more today and have two scheduled for tomorrow with the transplant nurse coordinators and with pharmacy. Can I recognize signs of rejection? Do I know the side effects of his various meds? And so on. I have a binder and flashcards and all the notes I've been taking on transplant since June, so I've been studying away when I'm not playing with Job. I read and reread the binder so many times this summer that I did feel pretty comfortable about these transplant specific things, but I'm really appreciating all this hands on training too.
Well, except for the things I've already done before. Do I really need to do a lovenox injection training again? I did it last time we needed anticoagulation and I've been giving all his injections this weekend. Do I really have to take out his NG tube and reinsert it? And so on. I understand why hospital policy exists buuutttt I also really don't want to abide by it every time when *I* think it's excessive. We'll see what flexibility they will allow me - it will probably depend on how the nurses think I'm doing with Job's care.
Eventually this week I'll have to do a 24 hour care, where I do all of Job's cares for that time period to show I can really take care of him at home.
12:06pm update:
Job had an even more disastrous SLP assessment today. His swallow is getting worse and worse as each day goes on. But now we're going to get Otolaryngology involved, which I wanted to do last year and have really wanted to do through this hospitalization. So I'm disappointed but trying to stay hopeful. Oto can do all sorts of things to optimize Job's swallow if needed and can give the msot clear answer of what is going on.
I've wanted them to take a look at Job's throat all year because he's never quite been right following his vocal cord paralysis during the Norwood surgery in April 2016. He did learn to eat and drink well, but he's had weird swallow/vomiting issues and he's quite speech delayed as well. But when I started asking for Oto involvement this summer, Job's heart started failing even more quickly so that obviously took precedent.
When he started coughing and especially when he started aspirating, I started asking again. I'd love to do whatever we can while inpatient because outpatient care is harder to arrange and happens more slowly... but if they couldn't see us inpatient for a week then I'd rather go home and do that outpatient.
So the thought it that his left vocal fold was paralyzed but his right vocal fold was overcompensating and worked to close off his airway from aspiration while eating these past two years. He learned how to make do.
But during intubation, the vent tube was down his throat pushing both vocal cords to the sides. So even after he was extubated, his right vocal fold still has to recover from that trauma.
Child Life brought by new toys, so we're enjoying those too. The same toys in the same room for the same two days was getting a little stale. I didn't realize how much I take environment for granted. When we're at home our environment is constantly changing so even though our toys aren't, we don't get as bored as quickly with the same toys.
And I was just thinking about the nature of contentment because I think this week will be a little hard for me as I long to discharge but still need to jump through the hoops of all the training we need to do.
9:00am update:
Another area where I've been receiving frequent questions is regarding Job's cold.
His cold hardly affected him other than to make his providers wear gowns and masks and to not allow the big boys to visit.
His doctors said that his response (non-response?) to this rhino virus is really really good news because he should have been super set back because he was so immunosuppressed.
Since he was strong enough to handle it while so immunosuppressed, he should be pretty strong and safe this winter (relatively speaking) because he'll be on less immunosuppression (probably).
We all saw him getting sicker and needing a transplant this summer, but so many kids gets so much sicker as they wait for a donor match and are then weaker going into the transplant and struggle to recover from surgery quickly and then also struggle to recover from a cold. This is one of the reasons SCH works so hard to list kids "early" so that they perhaps get their match "early," before they're really really sick and weak.
Sunday, November 4, 2018
Day 17 Post-op Updates
9:00pm update:
Job hasn't been sleeping well because of vitals every four hours, his steroid prednisone, some explosive night diapers, general post-surgical discomfort and disorientation... They started melatonin a few nights ago and that has been a great help but we really need to get his steroid dose moved to the morning. Moving med times from whenever they were ordered in the CICU to times that are reasonable to give at home is a big reason we stay in the step down ward for a while post-op, and it's a process because the med time can only move by 20%/day. So tomorrow Job will finally get his steroid in the morning which will then really help his sleeping at night.
All of that is to say neither of us have been getting great sleep this past week at night, so we took a great afternoon nap, all cuddled up on my bed. We were woken up a few times for lab draws and then we'd snuggle together again and Job would smile at me while we fell asleep again. It was wonderful.
Job cracks me up with his poses. He still gets worn out pretty quickly and then leans against whatever is close by:
And we've enjoyed sitting at the window. No more Lake Washington and Mt. Rainier view - we're now looking out to the garbage collection site, but sometimes we get to see trucks and hear them beeping.
Child Life brought cars and tracks and Job has been really enjoying a new rotation of toys.
1:00pm update:
We had another serial panel today, this time for his valacyclovir. So the nurses were in our room a lot again, as well as the resident and attending, but I'm shocked again at how helpful a slow "lonely" day was for both of us. I've been an introvert all my life but I still somehow forget that people exhaust me sometimes. And it's not at all personal, of course. I'm so so so thankful for the (already!?!) hundreds of providers we have seen this hospitalization and for friends and family pouring into us. It's been wonderful. But it's also been really helpful to shut off my phone today and pull the curtains on our room down and mostly just hide out with Job.
We listened to a lot of beautiful music and did crafts and read books all morning, plus the weekly line change fun for which we wore our matching masks.
Job hasn't been sleeping well because of vitals every four hours, his steroid prednisone, some explosive night diapers, general post-surgical discomfort and disorientation... They started melatonin a few nights ago and that has been a great help but we really need to get his steroid dose moved to the morning. Moving med times from whenever they were ordered in the CICU to times that are reasonable to give at home is a big reason we stay in the step down ward for a while post-op, and it's a process because the med time can only move by 20%/day. So tomorrow Job will finally get his steroid in the morning which will then really help his sleeping at night.
All of that is to say neither of us have been getting great sleep this past week at night, so we took a great afternoon nap, all cuddled up on my bed. We were woken up a few times for lab draws and then we'd snuggle together again and Job would smile at me while we fell asleep again. It was wonderful.
Job cracks me up with his poses. He still gets worn out pretty quickly and then leans against whatever is close by:
And we've enjoyed sitting at the window. No more Lake Washington and Mt. Rainier view - we're now looking out to the garbage collection site, but sometimes we get to see trucks and hear them beeping.
Child Life brought cars and tracks and Job has been really enjoying a new rotation of toys.
1:00pm update:
We had another serial panel today, this time for his valacyclovir. So the nurses were in our room a lot again, as well as the resident and attending, but I'm shocked again at how helpful a slow "lonely" day was for both of us. I've been an introvert all my life but I still somehow forget that people exhaust me sometimes. And it's not at all personal, of course. I'm so so so thankful for the (already!?!) hundreds of providers we have seen this hospitalization and for friends and family pouring into us. It's been wonderful. But it's also been really helpful to shut off my phone today and pull the curtains on our room down and mostly just hide out with Job.
We listened to a lot of beautiful music and did crafts and read books all morning, plus the weekly line change fun for which we wore our matching masks.
Subscribe to:
Posts (Atom)