I think the bottom line report is mostly good, but there is just so much involved in Job's care that I need to write out my report of what all we talked about in order to process it. Want to read along?
Oxygen
Let's just start with the most mortifying piece of information: for the last 2.5 weeks, while using the concentrator at home, I have only given Job 1/10 of the oxygen he was prescribed (but while out and about on his portable tanks he's received his full amount of 1 lpm). I am horrified and embarrassed and feel utterly irresponsible. I guess we must have played around with the settings during the training and the concentrator was set on .1 lpm for some example... But came home that way too. I did notice that it said .1 instead of 1, but assumed that the flow meter used a different unit measurement and .1 of whatever this unit was translated to 1 liter of flow. Since we now use the (otherwise unfamiliar) metric system for all of Job's medical measurements, I often have to clarify his meds with various providers as they often use different units. One doctor will talk in mgs while another will talk in mcgs and so on. When clarifying these med doses, I always feel silly (I am still insecure about my lack of mathematical confidence, after all) but have done it anyway to make sure. And I guess this time I just gave up clarifying. Perhaps the lesson is that unit conversions in Saxon Math homework really is helpful later on in life.
So Job's sats have slowly climbed from 76% to ~81% while on "1" (really .1) liter of oxygen, but this very slow rate of improvement to a mere 81% had us all worried. But last night as we decided to put Job down to .5 lpm on his oxygen, Seth - not me - went to change the flow meter. And he couldn't figure out how to go down lower that where I had it set... As the realization of what I had done set in, we put Job up to .5 lpm from .1 and immediately his sats rose to 86%. Today in clinic he was reading at 89% on .5 lpm.
Job's cardiology team just laughed at (with? maybe someday...) me for my mistake, since the whole time at home Job hadn't ever dipped below 75% O2 sats (his cut off). They probably laughed in great relief too, now that we had an answer for his "lack" of *acceptable* improvement.
It's now up to us to play with his oxygen wean as we see fit. For these next few days we'll probably keep him at .5 lpm most of the time and if he continues to thrive we'll probably keep him on .5 lpm during the night for a bit after that.
We're going to keep our tanks and the concentrator for the foreseeable future in case of a cold or emergency. It is nice knowing we have oxygen available so that if his sats start declining we can out him on oxygen at home instead of take him to the hospital (if that was the only reason to admit).
We'll notice a need for more oxygen if his work of breathing increases or he gets particularly cyanotic (blue) but mostly through regular pule ox checks.
Vocal Fold
Job passed his PT swallow check and no longer needs to be on thickened feeds! Yay!
We will almost certainly have to do another scope with Otolaryngology but their wait list is so long it will probably be a few months out.
His vocalizations and cry are still very quiet and raspy so there was almost certainly additional injury to his vocal cord during his arch repair. We originally thought his noticeable inflammation and raspy voice was just because of intubation and reintubation but if that were all it would have healed more significantly than it has. So we will look for continued but gradual improvement over the next six to eight months. It's entirely possible Job will always have a raspy voice because of this, but eventually his vocal cord should close fully (and then reduce his risk for aspiration).
Vomiting
This is the area where we had/have the most concern. Job is vomiting a moderate to large amount every day without a clear reason every time. Sometimes it is because he chokes himself with his hands. Sometimes it is because he coughs up his meds. Sometimes it is because he's still struggling to regulate his digestion and when he strains to poop he vomits because of the effort. Sometimes it is because he got really, really upset (like during today's echo).
Job is drinking so much (~900 mLs/day) and gaining great weight (~20 grams/day) that we aren't yet worried because of dehydration or nutrition concerns.
But it is a very new problem and is currently inexplicable.
So the plan is that we're going to start with a stool softener because his emesis does seem most tied to his bowel regularity, but after a few days we'll also go on reglan. And next week we'll add Gastroenterology to our every growing list of clinic followings and do an upper GI tract scope.
Echo Findings
I pushed for an echo because we're so concerned about Job's inexplicable vomiting. His liver was a bit swollen when palpatated, plus he's Job and has quite the reputation, so I think that makes it much easier to get oil on my squeaky wheel questions.
Good news first: Job's heart function looks good. Yay! His tricuspid valve regurgitation looks the same.
Not so good news: the flow out of his aortic arch seems too fast and there appears to be narrowing in his left pulmonary artery where the stent was placed. Echos cannot accurately show the severity or significance of these issues so it is possible that both of these concerns aren't really concerns at all. But they were alarming enough that we will be getting a cath in about two weeks.
Dr. Chan's best guess, based off of today's echo, was that we will likely need to balloon the stent. As with every cath, Job will be intubated and sedated, but if it's purely diagnostic and no interventions need to be made then he could go home the same day. If interventions are made then he would spend at least one night inpatient for observation. To need to intervene so soon after the Glenn would be very concerning and, of course, a cath carries some risk (perhaps most especially for clotting), but of course we need to know what precisely is happening with Job's heart and lungs, so a cath it is!
Hematology
Our hematology consult was mostly uneventful and unexciting. We were basically just establishing care with them as yet another clinic following Job. They agreed with the cardiology recommendation that we follow a six month regimen of lovenox for Job because he is so hypercoaguable (a standard course is eight weeks). They also recommended that we plan on starting a heparin drip before he has any additional central lines placed in the future. Most of his clots are due to these lines so we want to be proactive about them from here on out. (And they also recommended that he never smoke as smoking will drastically increase his clot risk! I mention this just because it's bith funny and fascinating to me. It's hard to imagine my baby growing up and smoking of all things and it's amazing to realize how invasive the health risks from smoking are.)
We will draw for his Antithrombin III levels at our next lovenox level draw because we need to see what his normal Antithrombin III levels are. I don't think I ever mentioned it but Job needed a dose of thrombate while in the CICU in one of his multiple transfusions. If his levels are still low this could be one of the pieces for why he clots so easily but probably wouldn't be the only reason.
Whew! It's a lot to take in, as always. Sometimes I leave Seattle Children's with my head just spinning with information. I'm so grateful for the incredible level of care we receive there! And as overwhelming as it feels to have November suddenly fill with ten more medical appointments, I'm so grateful Job's team is so vigilant.
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