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).

Day 5 Post-op Updates

7:52pm update:
Grandma brought Ezra and Isaac up for a visit and hung out with Job while we hung out with Ezra and Isaac.

Job went back on his epi and back on insulin, but feeds are going well and overall he's doing well.

1:17pm update:
Feeds started!

12:00pm update:
Everyone who comes in or walks by comments on Job's crossed legs:

10:30am update:

Yay yay yay! I'm so happy!

He just looks so much better. His swelling is way down, he's pink. He got new tapes and new dressings and new bedding, so that always helps him look better too even though it's purely superficial.

Job had a great night, after two pretty good days of calm recovery. I think the exact phrase was "Job is doing well and we can now move forward." Yay!

He is getting his epi turned off, his insulin turned off, his replogle (suction from his stomach) tube out, his vent settings turned down and his Notric Oxide turned down. Yay! And he's getting a NG tube placed to begin feeds, his lasix gets turned on again, and he starts one of his primary immunosuppression meds that he'll be on at home. Yay!

So much progress!

If he acclimates to all of these changes well then it's possible he could extubate tomorrow or the next day, which will make him so comfortable and allow them to lift his sedation so he can be awake! The other thing that will make him very comfortable is getting his chest tube drainage tube out in a couple days.

Day 4 Post-op Updates

Here are the updates for Day 4 Post-op! (10/22/18)

5:53pm update:
Magical words! "Job is doing quite well today." Yay yay yay!

Very few changes were made; the focus was on keeping him comfortable and stable.

The Benadryl he gets before Thymoglobulin helped him get a good nap this afternoon.

He's uncomfortable when he wakes up but is consolable.

10:28am update:
Job is waking up a bit and it a lot of pain and is scared, so today is going to be more of the same: trying to comfort him as best we can.

Yesterday wasn't very "bad" in that he was pretty calm all day, so today is probably actually the day I've been dreading as far as writhing goes. It's such a delicate balance to have him comfortable but not too comfortable.

They won't make any changes to day and just observe to make sure he's stable. If he is, then tomorrow we could try to make progress getting off various supports.

Seth entertained and distracted Job this morning with reports on the various NFL and collegiate games played this weekend:

Day 3 Post-op Updates

Here are the updates for Day 3 Post-op! (10/21/18)

8:16pm update:
I just got to listen to Job's new heart beat. I can't believe he has a new heart. I can't believe he's still alive.

7:40pm update:
Job had a pretty quiet day. He's woken up a little bit here and there and thrashed a bit but calmed down pretty quickly when we talk to him and rubbed his arms and legs and head. He got a PRN of dilaudid (an extra dose of narcotics) which helped during the worst of his pain. He got a dose of Benadryl before his dose of immunosuppressants so that helped him take a good afternoon nap. He's still too hot unless the cooling blanket is running. He was on huge doses of two different kinds of steroids which made him hypoglycemic, so they stopped one of the steroids and put him on insulin. It's a typical problem with the steroids, so he should be off the insulin soon.

1:37pm update:
A slight position change to the right side send Job's HR and BP down again, necessitating pacing for a bit. He recovered quickly but it's frustrating to the whole team that they don't know why this is happening.

10:56am update:
Vec is off, so Job's wrist restraints are on. His narcotics are upped to try to keep him comfortable, but he hates his mouth tube from the ventilator so he'll probably be uncomfortable and keep trying to get the tube out (thus restraints). I'm going to cuddle him as best I can and not be brokenhearted as he writhes. Maybe.

8:44am update:

I am guessing today is going to be a hard day as we try to wean Job's muscle relaxant, which has been keeping him paralyzed so that his body can recover from surgery. But he can't initiate his own breaths or cough while on this drug, so we can't make any progress towards extubation until we get off of it.

I am anticipating him being very uncomfortable and needing a lot of comforting.

When Job has been turned from his back on his side, especially his right side, (necessary to prevent bed sores) his HR and BP have dropped. He needed paced briefly twice overnight. So that instability could be the roadblock preventing other progress today.

He's peeing really well so they will probably yet again take off his diuretic.