Otolaryngology Appointment

Job had his oto follow up today to check up on his left vocal cord paralysis. It looks as if there is slight movement! Yay! Since he eats well and cries loudly and vocalizes, they think his paralysis is
healing. He will get scoped again in the future to check for more improvement as well. He is at greater risk of aspiration with this paralysis, which is why we are monitoring closely. (And the paralysis is a result of his Norwood.)

I got to bring the big boys along and they were so obedient and helpful and quiet during the appointment!! They have (largely) been stepping up to the plate as we continue to ask hard things of them for Job's continued care. So we celebrated with pie from the cafeteria and are playing at the hospital for the day.

Update! (8/29/16)

Job had a good weekend - much less fussy and ate better. Perhaps it didn't mean anything to begin with, but attitude changes and digestive issues are such big red flags for heart kids that I'm feeling relieved to see him back to "his old self" a bit more.

His doctors continue to talk to each other and to us about the aortic arch repair. I didn't realize this, but Job IS on the schedule as a Glenn + arch repair. Though it's possible this could change, it just feels significant to have it scheduled as such.



He has a two hour echo scheduled for pre-op (9/13) and if this echo shows that his arch function is better than we expect, Job could get out of the arch repair. Increasingly, however, it seems as if the growing consensus is that Job would probably eventually need the arch repair (in a year or two, so before the Fontan) and because he doesn't have vascular access for a cath in either leg, this would mean an additional open heart surgery. Therefore, even though he doesn't need it yet, they want to do the arch repair while his chest is already open.

Clinic Scare

10:36am
We are sitting in the clinic room monitoring Job's sats. If he can't pull them up shortly we'll readmit.



12:06pm
Glory, hallelujah!! Job is coming home!

5:05pm
Job likes to keep us on our toes, I guess. Nothing about his life has been or will be easy, yet sometimes I forget that and start to just enjoy him being home and make plans for the future (albeit the very near future, like his upcoming surgery)... And then he pulls another stunt like this morning's and I crash back down to reality again.

How can I be grateful for how far Job has come and hopeful for the future but also realistic about his tenuous stability? It's hard to find a balance most of the time. Minute by minute sometimes, day by day other times.

I am extraordinarily grateful for Job's relative good health. Even right now as we're watching his sats trend downward in anticipation of the much-needed Glenn, he is gaining weight and making strides developmentally. My goodness, we're home! He's not in heart failure! We have a plan for his immediate care! And so on. I. Am. So. Grateful.

And yet Job really is quite sick. He always will be. We have, I'm sure, many more unexpected sat drops and hospital admits ahead of us. Certainly Ezra and Isaac could also get sick or die at any time - this earthly, physical life is so fragile and temporary! But Job's unending medical needs have impressed this truth upon me, time and time again. But I forget, time and time again.

We were just at our regular, biweekly clinic visit this morning. Job did not want to have his vitals checked or to have an echo and was frustrated at the multiple attempts to do these things. Since his sats are already in the mid-ish 70s he doesn't have much reserve to work with, when he gets upset. Certainly his medical team knows this but Job took long enough to pull his sats up that we had to seriously consider readmitting to the hospital. We "escaped" this time, but I'm beginning to come to grips with the very real possibility we may not be able to wait until September 16th for the Glenn.

It is becoming clearer every day how much he needs this surgery.

Job is more cyanotic than he's ever been before. Months ago I had heard or read about "blue skin" as a symptom of low oxygen blood content, but even seeing photos other kids didn't adequately prepare me for the difficult reality of watching Job's normal, resting skin color change week by week.

His sats are hovering in the 76-77 (% of blood oxygenation) range which is ok for now, but not adequate long-term. It's hard to see these changes, but we were told to expect them as he grows out of his sano shunt.

If you look at any of his recent photos, you can see his blue skin on his feet and legs most of all. He is getting so much bigger and looks much better in so many ways, but it's getting harder for me to not solely focus on his little blue feet and legs.

And sometimes I just cover them up so I can pretend otherwise, like in this photo. His scar is even fading slightly, (just in time for his new incision). Look! nothing concerning here. He's just sleeping peacefully in his wedge at home! Or something like that.

Since coming home from our last inpatient stay, Job has been fussier than is his usual temperament and has been sleeping more. He also hasn't taken his bottle as well consistently. These are data points we're keeping close track of, though they aren't necessarily concerning in and of themselves. We keep our pulse oximeter close at hand although I feel so much more comfortable assessing his work of breathing now that I saw what desatting looks like while he was in the hospital. It was scary at the time but I've realized how helpful it is to me now, at home, to know what that looks like.

We spoke at length this morning, in clinic, about these changes and what they could mean. We did tweak some of his dosages to see if that could help - perhaps he's fussy because of reflux and perhaps he struggles with his feeds because his lungs are congested, so his digestive and diuretic meds got upped a bit.

I'm so thankful Job got to come home for another day! I'm so thankful that so many of you are praying for us and watching our big kids - we feel so loved. Most of all I'm so thankful that I don't depend on my own strength to endure this journey with Job. God has provided for us physically, emotionally and spiritually in ways I never could have imagined. He loves Job and has a perfect plan for every day of his life - even when, or especially when, I have a different plan or a different time table. God IS working for our good and His glory and He is daily giving me the strength to believe that truth and act on that truth.