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.

Day 9 Post-op Updates

9:00pm update:

Job had a really, really good day today.

We took off his hi-flow cannula right after rounds and he never even skipped a beat today, breathing like a champ. No problem whatsoever.

He had a number of moments throughout the day where he was alert. I even got him interested in a book enough to turn two pages himself. We watched some movies and talked a lot and pointed to our various body parts, but every activity is exhausting and needed a nap afterwards.

Pooping is still a cause of agitation for him but he's almost regular again and after making a dirty diaper he was like a whole new kid for a few hours. He was even pretty happy sometimes. I got a few half smiles.

He went back on insulin for a bit but it's off again. Every time he gets one of his steroids he spikes and then we chase it but I think it's happened enough times that they're comfortable saying it's the steroids. Most if not all of his immunosuppression meds can affect his blood sugar but they don't anticipate us needing to check his sugars at home.

His feeds are going well and they allowed him to begin drinking clear liquids. He nicely, if lethargically, signs "please" for his water.

He threw up twice but why is hard to say. I think it's likely related to his constipation and/or a dilaudid wean side effect.

His cough got better through the day. When he was calm and sitting up he could go a few hours without coughing. It's still very dry and he has no other symptoms, so we're all hoping it's merely an effect of hi-flow.

He got a bath and new clothes and smells so fresh and clean and looks so much better.

11:00am update:
Cuddles!

Job is off of even more support today. It's amazing! No epi, no insulin, no milrinone, NO RESPIRATORY SUPPORT. We'll see if he can stay off of all of it, but it's exciting to even try.

He started coughing last night. We're hoping that coming off of hi-flow helps, because it was drying him out (it's essentially like a constant gust of wind in his nose). If he doesn't stop coughing by this afternoon we'll have to do a viral panel and figure out if this is a cold.

He is really restless and grumpy still.

He is super shakey and just threw up, probably narcotic withdrawals.

Day 8 Post-op Updates

9:06pm update:
Job had a good nap while Grandma sang and read to him and Seth and I took the boys swimming and for pizza at the Ronald McDonald House (those on the waiting list for housing, like we are, can now go in with a day pass and eat meals and utilize the facilities).

But now that his brothers are gone he's gotten really agitated again. I think because he's gassy again? So we're watching the World Series and trying to cuddle him to sleep.

3:00pm update:
Seth brought Ezra and Isaac up to the hospital and I was apprehensive about them visiting while Job was so fussy... but he actually calmed down quite a bit when they walked into the room.

Then Daddy held him while I took the boys to go play and the suppositories and Miralax finally started working. I'm shocked how much more comfortable Job is now that his bowels are moving! He's practically a different kid.

12:00pm update:
Grumpy boy got his chest tube out. And is gassy and mad he's gassy.

He's been thrashing around *on* me!

10:00am updates:
Rounds were exciting this morning! We DCed a bunch of orders and meds and are switching several meds from IV to oral. He gets his chest tube out soon. I will get to hold him. His brothers and Daddy called and told him all about the history of weapons. His restraints came off.

7:00am update:
Job is the saddest little boy there ever was this morning. He can't get comfortable and keeps looking at me and mouthing protests. His voice is horse from being intubated so he can't make sounds and his hands are tied up in restraints so he doesn't yank out all of his IVs or cannula. So he's unable to communicate, still waking up from 7 days of sedation, uncomfortable from his chest tube, constipated and gassy, and overall confused and irritated and tired.

He looks really really good, though. He's so much less puffy and his skin tone is better-than-his-old-normal and his incision and (4!) line infiltrates look really really good.

We just have to get over this hunp.

He had a hard night, discomfort wise (and starting off the night with a 3 poke traumatic IV insertion didn't help).

Day 7 Post-op Updates

5:57pm update:
Job is finally asleep!

The head of the transplant team came by and told me he "couldn't be more pleased" with how Job is responding to his immunosuppressants - he's already starting to show stable levels - and that his heart looked really really good on echo this morning.

Next is getting Job's bowels moving because he's so gassy and constipated that he's really uncomfortable.

And the next thing that needs to come out is his chest tube because that will make him feel so much more comfortable and allow me to hold him.

3:00pm update:
Job is consolable but can't settle down long term and take a good nap.

He got his pacing wires out!! He's starting to look naked!

1:00pm update:
Tube is out! Satting 98 with no increased work of breathing.

Calming down but still upset and breath holding sometimes.

Today will be all about making sure he can stay extubated.

10:50am update:
Extubation is set for noon!

His Extubation Readiness Trial (ERT)s yesterday and this morning went well but Job has a plicated diaphragm, compromised lung vessels (because of 2.5 years of oxygen depravation), and pulmonary AVMs working against him as well as the fact that extubation necessitates cutting his narcotics in half so he wakes up to cough and breathe on his own. At two years old this is going to be confusing and scary and infuriating.

Hi-flow is the machine to the right and his vent settings are to the right:

8:30am update:
Boring night = great night!

 I sleep so well here at the hospital. I think I'm just really tired when I lay down?

And then I sit up and see these glorious fall colors out my window:

Day 6 Post-op Updates

We're approaching one week, tomorrow, post-op. I can't believe it's been a week today since we got the call that an offer was accepted!

9:09pm update:
Job recovered nicely from his PICC placement. He got a "bath" and total line change. I had to take a picture because it's so amazing:

3:00pm update:
Job is in the OR with Interventional Radiology (IR) getting his PICC line in. It's so wonderful that they were able to fit him in to a cancellation spot today while he is still on the ventilator because if they didn't have that cancellation he would have had to wait to get his PICC tomorrow or the next day and then would have had to be reintubated for the procedure and then exubated again.

His room looks so empty but I'm going to try to get a nap in before he comes back.

1:00pm update:
Fantastic news! There is no fistula!

There is only a clot in the vessels in his left calf. Where did it come from and when? They're not sure (yet?), but he's already on heparin (an anticoagulant) because that's standard post-op care so he's ok for now. They will continue to watch closely but he is getting blood to his foot, just more slowly than his right foot is being profused.

We'll eventually transition to lovenox injections twice a day at home. I hated giving him shots before but I know I can do it again.

9:50am update:
Rounds were hopeful! "Job is hemodynamically stable and we are working towards extubation." Hooray!

We're working on decreasing meds to be able to extubate. The thing that might hold us up is when the IR team can place a PICC line, because usually that does necessitate being on the ventilator. If they're really busy today and can't place the line then Job may need to stay on the ventilator until they are able to place the line.

And, of course, he has to be able to pass his ERT (Extubation Readiness Trial), showing us that he can breathe (some pressure support allowed) well enough without the ventilator.

His feeds were stopped because he's constipated, so they're starting a constipation bowel regimen of glycerin suppositories and Miralax.

His left leg is noticeably cooler than his right leg so there's concern he has a fistula (resulting from so many pokes from his caths) and ultrasound is on their way up to assess. If he does indeed have a fistula (as shown in last night's ultrasound) then he would need that fistula connection repaired in the OR next week. We don't want his blood mixing in his leg (though last year we needed that in his arm).