This "journal" of sorts that I've been writing out this last year and a half (!) has been an immensely helpful tool for me to process this journey of emotions and information overload. It has also been a wonderful way for me to double check dates and procedures and medications as I interact with Job's various providers. So. Update. A mid June update. Let's do this.
Job is on .5 lpm of oxygen. He sats around 80% but has struggled to go down to .25 lpm since his cold a month ago. He has been on home oxygen since mid October and shows no signs of weaning off any time soon. We're hopeful it's just a matter of time, but are starting to prepare for a long term oxygen use. His cannula is very much getting in the way as he starts to move around and gain strength.
To help us figure out why Job is still on oxygen, he will undergo his fourth cardiac catheterization on June 29th. For some reason, these caths are almost harder for me emotionally than his surgeries even though they're not necessarily as invasive.
He on seven medications, given at ~8 am and pm: omeprazole, erythromycin and miralax (digestion), lasix and spironolacton (diuretics), enalapril (heart function) and aspirin (only once a day). He takes his meds like an absolute champ, never protesting.
Job has a special ed teacher come to work with him twice a month and we go to the Children's Therapy unit twice a month for speech therapy and every week for physical therapy, with occasional occupational therapy consults. We're figuring out our new schedule for cardiology follow ups but currently expect they will be every two months for the rest of the year. We see gastroenterology every six weeks. We just had a good hematology visit and (provided Job doesn't clot during this next cath) plan to switch to yearly follow ups! We now see nephrology and neurology yearly as well. May and June have been particularly busy months for his appointment schedule as we just checked off all of those yearly visits (plus had a hospitalization and extra cardiology visit). Monday (June 19th) we will have a follow up audiology appointment to study the fluid found in Job's ears back in April and decide about ear tubes. We will also do a lower extremities ultrasound to confirm that his leg clots are in fact stable. I get to take or make daily phone calls to his various providers, also. Particularly to his pharmacy and home care services, ordering med refills (every 10 days) and new oxygen tanks and lots of cannulas (he's ripping them off and sometimes in half every other day or so!).
I have to be so careful about keeping his appointment calendar! It is certainly overwhelming at times to look at my calendar and see his appointments (all marked in green ink) on almost every day of the month, but then I make myself reframe it and declare my gratitude for the HUNDREDS of people who work to keep Job surviving (and hopefully thriving)! I counted 18 appointments for the month of June (I told you it was busy!) and have to also declare my public gratitude for the dozens of people (my parents and our church especially) who have helped out by watching Ezra and Isaac so I can chauffeur Job around.
His weight gain has been good, closing in on 19 lbs! He loves to eat and has been exploring new foods almost daily. He's getting his molars in, which hasn't been pleasant, but I'm excited for him to be able to eat even more textures and foods! We have a follow up VFSS (swallow study) sometime soon to determine if he is still aspirating on thin liquids.
After being completely aphonic, following his vocal cord paralysis in his first open heart surgery, Job gradually began to make some noise, then some louder noise, and then, suddenly, these last two weeks he's shown us an explosive burst of vocalizations! It has been absolutely amazing! We went from almost no sounds to new sounds every day!
Also, Job is quite mobile now. He discovered that he can scoot around on his bottom quite handily and is so proud of his newfound skill. I want to be proud of him too but am a little disappointed that doing so has apparently taken the place of going from sitting to his hands and knees. Job's physical therapist was especially helpful yesterday at his appointment, giving me a new set of exercises to work with him on (on a medicine ball) to work on his core stability. She reassured me that she'll worry about his (oh so important) crawling and I can just be happy for him that he can move independently. But Job also never stops moving. He wiggles and wiggles, no longer content to sit and cuddle or play. He wants to explore everything!
So! There's ever much more than you wanted to read about the various aspects of Job's medical care.
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