June 2018 Recap

Job did two days at Bible Day Camp at our church this week and felt so special and important as a big kid. It was so sweet to secretly watch him go around church with such a big smile on his face. Of course, when I took a picture he gives this scrunched up grimace.

This week I spent much of my mostly kid free time on the phone with doctors and transplant coordinators and have a few more answers now.

Job has passed every test or evaluation that we have done so far. We have two big days of evaluation coming up (July 23 and 25) where we will meet with numerous specialists and do more testing. This next month, until then, ought to be relatively uneventful.

The Transplant Selection Committee meets every Wednesday afternoon, so Job will probably be presented on August 1st and they will likely make a decision that day to approve or deny him for transplant. And then we ought to know within a few days after that.

If he is approved for transplant all that paperwork would happen immediately and he would be listed by mid August. MID AUGUST.

And then, once listed, we wait.

This is all happening so much more quickly than I ever dreamed it could or would. Job's heart is pretty sick and this is our remaining option, so they are trying to push him through quickly.

Vaccinations and Listing Info

Job's favorite thing right now is keys, followed only by his love of trucks. So he was pretty pleased that he got to sit in the truck and pretend to drive.

Job will be presented to the selection committe on Wednesday, August 1st. They will review all of his evals and determine whether or not to list him for transplant.

Later today I'll take Job in for his second set of MMR and varicella vaccinations. Typically these would be given around age 5, but because they are live vaccinations we're accelerating that timeline as Job cannot ever have a live vaccination post transplant.

And, of course, if we list then we must be ready to recieve an offer that day, so Job cannot be listed until he is sufficiently vaccinated as per the recommendations made by the Infecious Disease team.

He cannot be listed until three weeks after receiving live vaccinations (which MMR and varicella are), which would put us at a possible listing date of August 17th.

There's a chance SCH would need additional testing and there's a chance that they will determine he is not a candidate for transplant, but we don't currently have reason to anticipate these outcomes. This week will be an exercise in patience and trust because nothing is official yet and we want to hold our expectations in check.

Final Transplant Eval

Today was Job's last transplant eval appointment!! (Unless they ask us to come back for some other testing.

Job really enjoyed his extra, exclusive time with Daddy and didn't fuss too much about his ultrasounds (which he slept through!) of his lab work.

One really exciting thing to me is that we officially got approval to do right arm blood draws! We haven't had right arm access for at least two years because of blood clots the first year and because of his axillary fistula this last year. Now that the fistula has clotted off we're not worried about blowing the fistula with the needle. His left arm is so scarred that he's often a hard poke, but now he has an arm fresh with untouched veins!! Lab draws have always been such a simple but sad thing.

Nutrition clarified some of our questions about foods prohibited post transplant.

We met a new-to-us cardiac anesthesiologist and the other transplant coordinator we'll be wotking with, should Job be listed.

The most beneficial part of this week was the 1.5hr meeting we had with Dr. Nuri (the surgeon who has done all of Job's surgeries). He didn't give us much new information but he carefully sumarized the entire transplant process with just the perfect amount of careful detail. That he's a doctor we know well (and so greatly trust and respect) made his synopsis even more valuable. And we finally got a picture with him, something I meant to do after Job's first surgery and his second and third and fourth.



I have so much more information to process (through writing most likely) about what we're tentatively expecting in the next weeks and months but that will come later!

Penultimate Transplant Eval

Today went well!



We tried so hard to get an O2% read while Job raced through the hospital halls to "prove" how low he desats with exertion but had no such luck. The pulse ox doesn't read well with such activity.

His dental exam and blood draw labs were tear-inducing but went better than we expected. Yay!



One more set of appointments on Wednesday and then we wait for the selection committee to make a decision!

July 2018 Recap

We've had lots of fun in the sun all over Washington state this month. Job considers himself one of the big kids and doesn't slow down much. We've learned lots of tricks to make him take breaks but he's pretty stubborn these days.

The hardest thing right now is finding an appropriate balance of when to hold him accountable to what we ask of him (stop running towards the street, don't throw blueberries on the ground, no car keys, etc) because so often his response to a "no" turns into pretty scary breath-holding, purple-faced screaming fit. We can't actually let him cry even for a few minutes without medical repercussions... But we can't let him have or do whatever he wants either.

Our older boys were such early communicators that we didn't experience the "terrible twos" (age three was much harder than two!), so this stage of parenting such a strong willed toddler who struggles to communicate is definitely challenging. How do you parent special needs appropriately? So far lots of tears and uncertainty and prayer.

We got our schedule for Job's remaining evaluations. This week we see GI and then next week we see Heart Failure and Transplant twice, then pharmacy, infectious disease, dentistry, social work, psychiatry on Monday... and then two days later see nutrition, cardiothoracic surgery, anesthesia and then radiology for chest x-rays and two sets of 3 hour ultrasounds (one upper body and one lower), plus several labs. These will be very long days but it will be so nice to see so many specialists in a close period of time so as to be able to ask follow up questions to each discipline.

All of the data they've been collecting on his eligibility will then be presented to the selection committee at one of their Wednesday afternoon conferences (probably on August 1st).