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.

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.

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.

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.

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.

Day 16 Post-op Updates

10:00pm update:
I've gotten a lot of questions about his swallow.

He's been choking when he swallows stuff (and then that can go into his lungs which is dangerous) so they don't let him eat or drink. He has a NG (naso gastric) tube going down his nose into his throat into his stomach that gives him this formula stuff instead.

He has a paralyzed left vocal cord from his first surgery in April 2016. He learned to swallow despite it but extubation probably messed up that process. He should be about to regain his ability but it will take a while.

He had a NG tube from April to July 2016 (only June and July at home). He learned to drink a bottle way way faster than anyone expected, though we couldn't ever figure out how to nurse and swallow. Many HLHS kids are on feeding pumps for a long time, so this was the one thing (or it feels that way) that he's done to exceed expectations.

Being on the tube this long post-op and even longer still at home is really really frustrating because it impairs his quality of life so much. And we can't eat or drink around him because he can't eat or drink. Friday I was so over it and thinking it wasn't worth the trade. It is. It really is. But it's hard. And if it's this hard inpatient, how hard will it be at home?

9:00pm update:
I am so very thankful for today. Friday I was just despondent and overwhelmed, but today has been restorative.

Job has had a better day than I could have hoped. He still had several fits about wanting food/drink but we were able to manage them better by moving around the room and/or offering a "water pop" as a small comfort.

We had to do about six blood draws today for his MMF panel, to see how his body is metabolizing one of his immunosuppression drugs throughout the day, so the nurses were in our room a lot but otherwise we only saw the resident and the attending and Child Life.

We're really loving our newfound freedom of movement.

4:00pm update:
I woke up today fully expected today to be miserable. And it started out that way!!

But Job was so very miserable that we were given two very great mercies: a water dipped sponge every hour (no more dry mouth!) and days off cardiac monitors (we can go anywhere in the room! well, when not on a feed... but the pump is on a pole that can be wheeled around with us).

It's only been a few hours but life is sooo much more bearable for Job now.

8:00am update:
Job is almost back to full mobility. He pulled himself up to stand several times and I think he'll be standing independently by the end of today or tomorrow.

He doesn't have his baseline stamina yet but he's getting there quickly.

We're hanging out on the floor a lot today, on the mat they gave us. His cardiac monitors have long wires but he tube feed doesn't. Every three hours he gets a feed for two hours (though we'll continue to work on condensing that further), so he'll get an hour off soon and then can move around more.

But he is very very sad to not be eating and drinking. He knows foods and beverages exist and he keeps signing for them. He just can't figure out swallowing post extubation to not aspirate.

He's had some epic tantrums where it's hard to keep him safe; trashing and climbing so much. Last night he saw my water bottle and screamed and hit and kicked for 38 minutes. I would hold him until he was about to throw himself out of my arms and then I'd lay him on the crib until he was about to concuss himself hitting his head on the crib, then I'd hold him until I couldn't any more and put him back on the crib...

And he's had a couple more tantrums today, too, and just isn't interested in my distractions. He doesn't understand why I won't give him what he's asking for.

Day 15 Post-op Update

9:00pm update:
Job is now NPO. Nothing by mouth. We're so so sad, but that's nothing compared to how he feels about it.

The hope of going home without a NG tube seems nonexistent tonight. And SLP doesn't consult on the weekend, so we won't try to eat/drink again until Monday. I'm trying to think of this as two extra days of healing rather than two days of no progress.

He'll probably be off viral precautions in a day or two which would finally mean his brothers can visit him.

Though he's feeling better and more mobile and more himself, he's withdrawing into himself more and more. He's bored. He's annoyed. He likes to cuddle but has little to no interest in any of my stories or songs or games or silliness or efforts to engage him.

4:00pm update:
SLP came back and Job again aspirated 50% of the time when eating or drinking. She's going to leave the decision to the team, so we'll find out later today.

We also had our first transplant training! There are six transplant coordinator nurses and they divided the alphabet into thirds, so we have two nurses in particular following us (as we're in that last third of the alphabet) that we have gotten to know through the listing process and now transplant process. All six nurses and five doctors on the Heart Failure and Transplant team are intimately involved in Job's care. These two just especially. They're who I call first. They're the two we're closest to in this new TX family we're trying to get to know.

We sat for an hour and a half and talked about all sorts of aspects of his care. She thinks it's likely we'll discharge mid week next week, depending on how his echo from this morning looked, how his immunosuppression med levels stabilize and how his swallow study stuff all shakes out.

12:30pm update:
Rounds are later here on the floor because the team rounds on the CICU first. It's very different being on the floor and I knew it would be. But the transition TO the floor is so very complicated and I had forgotten that.

I'm thrilled that we're here, absolutely. But policies are different, the entire staff is different, expectations are different. We're on our own much, much more - nurses only take vitals very four hours and, if meds aren't due in between, we only see the nurse at those four hour marks (unless of course something happened/we called for them).

I've spent all of today in near constant communication with various providers, making sure all the nuances of Job's care are properly shared with the correct people. Little tiny emphases here and there actually make a big difference. Small miacommunications add up to big ones quickly.

And I'm advocating hard for help with his swallow and trying to explain years of concerns and interventions and pushing for formal studies to both help him get back to his baseline feeding and drinking and his speech delays.

I'd like to crawl in a little bubble and hide away from people for a few hours but that just hasn't been possible today and it definitely won't be possible next week. But the weekends here on the floor are very very low key. Almost nothing changes and only the most essential providers are on shift, so Job and I ought to have lots of alone time to recharge our introverted selves.

10:00am update:
Job is really struggling to take his two oral meds. SLP came by and I addressed that concern with her and we tried to give Job yogurt and honey thick liquids and he aspirated on both. I asked that she please please come back this afternoon when he's better rested and that's the plan. But I'm seeing the writing on the wall that he'll get his purees taken away.

He was really active all morning, playing and sitting up independently and interacting with people coming in the room.

Day 14 Post-op Updates

11:00pm update:

Here's Seth's summary update for the day:

Job is out of the CICU! This is our first night in the stepdown ward, aka surgical floor, aka River 6, aka River C. It has a lot of names. No matter what you call it, it's a huge step!

He is still on viral precautions, but his sats and respiratory rate are well enough that he is no longer on any oxygen support.

Job has been pretty withdrawn and lethargic the last several days as he slowly regains strength and recovers from his cold virus. We were able to get him to sit up for small segments of time today, but he tires quickly.

Speech and OT are going to visit Job tomorrow, so hopefully we will make headway in those areas while we are here in the ward. As of now, he is still only cleared to eat applesause and other pureed foods.

One major thing that must be accomplished before we go home is stabilizing the immunosuppressant levels in his blood. This is something we are going to learn more as we go, and we will update more as we become more educated on managing and protecting his body with a now compromised immune system.

6:07pm update:

Job has had two big fits today and cried audibly and pulled himself up to sit and even to stand, using his crib. What prompted such an energetic burst of activity and emotion? The sight of food and drink.

It's really exciting to see him be so interested in something and to make sounds and to move his body... but it's really sad because he does all of that work but we can't reward him. We just try to tell him we understand what he wants but we can't give it to him even though he's asking really nicely.

4:00pm update:
Job went down to .5 LPM of oxygen when we arrived on the floor and then after an hour or two of that he pulled off his cannula and hasn't desatted since. Well, he has but then he coughs and his sats pop right back up. He hasn't desatted and stayed down there in the 80s.

We're getting all moved in to our new room. They brought over a play mat and we've spent a lot of time rolling around on it and cuddling on it. Eventually I'm sure we'll spend more time in an upright position but right now we can only sit up for a few seconds here and there.

As a a transplant kid, Job will from now on always get his own, single room. The ICU, is, of course, all single rooms, but the floor has a majority of double rooms. It's really nice to have our own bathroom (ICU bathrooms and showers are for patients only) and our own fridge and such a huge room with lots of floor space (and not very many machines!!), and the fold out couch can be pulled up right next to Job's bed (unlike the bed in the ICU which was pretty tucked away from Job). We can eat and drink in here too, although we can't let Job see us do so or he gets really upset because he wants to eat and drink too. It's just really nice to get to do whatever we want without all of the ICU precautions (that are totally reasonable for the level of care required there).

1:00pm update:
Here we gooooo!

12:00pm update:
 All packed up and ready to go. He just sits and watches everything skeptically, with his legs crossed.

10:30am update:

WE'RE MOVING! Eeee!

His Art line gets to come out, his PICC line can be hep locked, he can wean off oxygen, more meds switched to entral... fun stuff! But no more ICU!

We went down to 1 LPM of oxygen at 100% FIO2,

8am update:
Cuddles make everything better. He's bored of stories and my attempts to get him to watch TV and my silly faces and games, but he doesn't have the stamina to do much else yet. Even just a few hours into this day I'm so excited to see a huge difference in his responsiveness compared to yesterday.