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.

Day 13 Post-op Updates

3:00pm update:
Job is now completely off of milrinone, which is the last med he needed to wean off of in order to move down to the floor. No more IV meds!! Woo hoo!

SLP came by and officially cleared Job to now eat purees. Just 1oz at a time, three times a day. Job's work of breathing definitely increases when he eats, so we have to go slowly, giving little bites. But he couldn't be more thrilled.

PT and OT came by and I gave them Job's medical history and therapy history and some of my concerns and goals for him. They will alternate days from now on until we discharge. Even though I cognitively understand that Job just came through a major trauma, the fact that my previously active toddler can't even sit up on his own yet two whole weeks later is rather hard emotionally. Actually, everything is still hard emotionally despite how well Job is doing.

He's starting a new med because his blood pressures are too high. He's stable on his anticoagulants but not on his immunosuppression meds.

His lungs are clearing up and he's coughing less and he's down to only 2 LPM of 100% O2, so no positive pressure from hi-flo, just the equivilent of wall oxygen (though through the hi-flo machine in case we need to go back on hi-flo). He only pulled out his NG tube once today, so we only had to endure one traumatic reinsertion.

It seems like every bit of his body is marked up in some way, from some needle or scalpel or pressure wound or adhesive or infiltration. The back of his head now has two bald spots, one of which looks red and sore, so we added those on to his list of skin areas to monitor.

He got two good naps today, which were sorely needed (in addition to the good night of sleep). Job has been so very sleep deprived because he just can't get comfortable.

7:00am update:
Last night Job slept better than he has all week (since extubation and sedation wean and coughing began)! So he was pretty interactive this morning, though he still gets really tired quickly.

We're seeing stamina very slowly increase, however. On Monday he couldn't hold his head up at all, but today he held his head up for about 20 seconds on his own when I was holding him up to sit up. He also has let me hold him up to sit for longer and longer periods of time.

Day 12 Post-op Updates

5:00pm update:
Highlights from today: Job got to play with extra sensors and leads and put them on his monkey. He watched Winnie the Pooh. And he proudly triumphed after pulling out his NG tube and hi-flo cannula on multiple occasions.

Lowlights from yesterday and today: he has a cold virus. Very frustrating and disappointing. We'll be on viral precaution for several days (which means his providers have to gown up before they enter the room and his brothers can't come visit), and that is definitely going to slow his post-op recovery.

He is not very symptomatic, just a wet cough. But he has de-satted to the mid-80s, probably both because of the virus and fluid in his lungs that is still there from surgery (aka pulmonary adema). They put him back on hi-flo because of the de-satting, and his saturations are back in the mid to high 90s on 4 LPM of hi-flo.  He probably won't leave the CICU till he is off oxygen support again.

He continues to wean down milronone, which is the last medication they must discontinue before he can leave the CICU.


Overall, things are still on track and he is doing well. This virus is just a bump in the road, Lord willing.

12:54pm update:
Job's doing really well on 4 LPM of hi-flo now. And it's taped in a way that is bothering him less.

9:09am update:
Wet cough, satting in low 90s during breaks from hi-flo. X-ray was fine. Dr. Kemna said echo was very good. Still off insulin. Last day on his milrinone wean. Hates his cannula.

2:13am update:
They tried to lower his hi-flo to 4LPM (from 8) and he de-satted to the mid-80s. I guess he really does have a virus. 😞

Day 11 Post-op Updates

3:17pm update:

Job is back on hi-flow. 8 liters per minute, which is a lot of support.

I'm crushed.

The ICU is the best place for him. He's ok. But this is going to get worse before it gets better and we're going to be here a lot longer.

Why is every step of this journey extra hard for Job? Complications are constant.

1:15pm update:

SLP came by and I gave the very long history of Job's vocal cord paralysis and diaphragm plication and oxygen requirements and thickened feeds and crying leading to breath holding leading to coughing leading to vomiting... and then she assessed him and will start coming by every day to work on feeding and work on his expressive language while we're here inpatient.

I'm so excited to have intervention in this area because it's been a lingering concern that has been pushed to the side this summer especially while we focused on his failing heart.

11:21am update:

Job is desatting occasionally to the low 90s. He's still coughing. He's off insulin and no longer getting his blood checked every hour (just once a day!!). He's down on milrinone.

He's much much more himself today, though very low energy. He's not sleeping well because he can't get comfortable with his lines and because of his cough and because the steroids he's on for his transplant (TX) make it hard to sleep too. It's so so fun to see him interact with us again, though they're "just" little smiles. He whispered/mouthed "Dad" and "Mom" and has signed "please" a few times, but it probably hurts him to talk much.

Whhhyyyy is he coughing, though? He swabbed positive for rhino but the thought is that that might be a remnant of the cold he had the week before transplant. He's definitely not managing his secretions well. SLP will come by to assess later today.

Day 10 Post-op Updates

3:29pm update:
I spoke to Dr. Law for a while about Job's cough and went over Job's long history of left vocal chord paralysis and his various swallow studies and his propensity to vomit when agitated. The thought continues to be that this is not a cold but something physiological. Is his NG tube irritating the back of his throat? Is it soreness from the ventilator? Is it difficulty passing saliva through his oral larynx? It sounds as if Job is clearing his throat when he coughs rather than something from his lungs. His x-ray is clear and he continues to be asymptomatic, so hopefully Speech will have some answers for us tomorrow.

In addition to starting Speech Therapy, I also asked that we start Physical Therapy and Occupational Therapy tomorrow. Obviously we'll go very slow, but I don't want to wait until Job is ready and then wait a few days more for the consults to go through.

Dr. Law also answered my questions about Job's left lung and left pulmonary artery (LPA). Even 10 days post-op, they haven't gotten a good picture of the flow through the LPA and the assumption is that it is indeed stenotic (narrowed). Job's LPA was stented two years ago and during the transplant itself the LPA replacement and new connection took a great deal of time, so we've all known there could be additional issues. If there is stenosis, then a stent will likely need placed again.

If this LPA stenosis was Job's only concern, it wouldn't be an issue. Apparently, it's not uncommon to transplant a heart with only one functioning lung! But because Job has had many other complications in his life, this LPA stenosis will probably mean a slower recovery for him.

10:00am update:
Rounds were pretty boring today! The main question is what to do about Job's blood sugars and whether or not his cough is because of a virus. Both questions can only be answered with further observation.

I've received many questions about our ability to connect with the donor family. As I understand it, we cannot receive any information about the family from the hospital in order to protect their privacy. We were told that the heart Job received was small and that it was on ice for 3.5 hours, but they can't even tell us some of the medical details about the heart (like what markers for disease or infection it has). We get to trust the team here at SCH that it was the best fit for Job.

One year post transplant (October 18, 2019) we can send a letter to the donor family through LifeCenter Northwest, our regional organ donation procurement organization. The family is then notified they have a letter and they can choose to accept it or wait to accept it. LifeCenterNW facilitates these first rounds of communication, which is kept mostly anonymous, until both families consent to sharing contact information. We'll be allowed to share that we're in Washington state, but not which city, and our first names, but not last names, and so on.

Some families choose to meet and stay in touch and other families choose not to - it will really be up to the donor family.

8:00am update:
Job rolls around in his bed, on top of all his tubes and wires. He likes laying sideways and holding on to the crib "slats".

He was really happy to see me when I woke up and smiled at me and interacted with me a little bit as I showed him some of his dog toys. Then he got tired out and covered his face with his hands and turned his head away from me.

I was expecting him to be tired... but probably after 10 minutes of activity, not 2 minutes. I'm trying so hard to not have expectations but it seems impossible to let go of them completely. So then I try to hold my expectations loosely... but that's hard too.

When he was in surgery and during those first days post-op it was easier to just be grateful he was even alive. Now, perhaps, I'm taking that for granted and focusing too much on the next step and how soon we can get there. I have a lot of quiet time sitting in this hospital room, by Job, so I've had lots of time to think about how deeply discontent I am and how deeply I want control.

I've always known these things about myself, but Job's medical issues give me ample opportunity to grapple with the reality of how pervasive my desire to orchestrate everything really is and how very impatient I can be.