Caleb had a busy week with follow up appointments at
Primary Children's Hospital.
One of his appointment days started with a little adventure: We left for the hospital at 6:45 AM, and by the time we got there, Caleb was smelling a little bit suspicious. I took him to the bathroom to check his diaper and sure enough the was an explosion clear up his whole back! Luckily I keep a spare pair of pants for him in the car... but no spare shirt. So after about 20 minutes, 200 wipes, and mental note to lysol the heck out of his stoller... I wheeled Caleb into the office-shirtless! Fortunately a nurse found him a fluffy white sweatshirt that made him look like a cute little marshmallow!
CT Scan: The results showed no change, and his head growth is still in check.
Neuro surgery: His shunt still looks good! We are so thankful that he hasn't needed any revisions!
Neurology: His seizures are under control, and we we may try to wean him off Baclefan.
Pulmonology: They suggested some medications to consider if Caleb has excess secretions and his wheezing worsens (using singular along with his flo vent, and using tobi meds) But for now we all feel comfortable with what we're already doing. We also increased the tidal volume on his ventilator to 145 to accommodate his growth.
ENT: Caleb's trach site is awesome! The doctor had some tips to help with Caleb's oozing ears. We're trying an anti fungal for yeast and are finishing an antibiotic to help with the infection.
Rehab Doctor: The curvature in Caleb's spine is gradually increasing, but we are just going to keep watching it. His G tube site looks great. We'll keep using DAFOs for his ankles and will keep trying to find a bath chair
Blood work: His nutrition looks good, his phenobarb level is in normal range, his thyroid was low so we're increasing his medication, and his sodium was a bit high .
Follow up: We were referred to endocrinology for his sodium levels, thyroid, and body temperature irregularities.
Each doctor was so happy with how much better Caleb looked, and Caleb gave each one of them a heavenly smile to say thanks- even the lady who gave him his pokes.
13 comments:
Sounds like a very busy week!
Shew that WAS a busy day! So glad that everything was status quo, nothing like a little relief! I always dread dr appointments...just waiting for some new dx. So it's great that you had so many and they all went great!
What a big week! Making the trip up there always wears me out. I'm glad things looked good. Maybe we can play a little next week.
What a positive report! Well, except on his spine. Is he followed by an orthopedic doc?
Hope the endrocrinology appt.goes well.
Barbara
I'm laughing that he strolled in shirtless! Cute little man. :) I TOTALLY forgot to ask you about these appointments so I'm glad you mentioned them here. Ben is on Flourineff (sp?) for his low sodium issues, please let me know what they say about body temperature irregularities? Does he mostly stay low or do they get high too?
Becky- Caleb's sodium levels were actually high- that hasn't ever happened before, but we have started adding salt to his feedings... we'll keep working on that one. As far as his body temp- it's generally low: 94-95. When he goes above 97 I wonder if he has a fever :)
Barbara, nope, Caleb isn't followed by an orthopedic doc. We know we won't put him through surgery, but may try a spine brace in the future, you're so sweet to care about our little guy!
Looks like you have an able team of physicians. I wouldn't add another unnecessarily myself. Barbara
What a brave kiddo. He just wants to spread his joy anyway he can, even if it means a long week of appointments.
April - Thanks for sharing. I would be interested in knowing how things go with endocrinology. Alia has recently started having magnesium, calcium and a few other issues, her temp has always ran really low also. Kept her home on monday from school because of her temp, school asked how high - 98.5. It was a temp for her.
Glad that overall things look good for Caleb. You were one busy momma. And Caleb- shirtless, but still smiling! So sweet.
God Bless,
Jen
Glad that overall things look good for Caleb. You were one busy momma. And Caleb- shirtless, but still smiling! So sweet.
God Bless,
Jen
Wonderful news all around!(well...about everything except the 'explosion'!)
Also, I would love it if you could email the names of the products you use to keep the extender in place, that would be awesome!!
greenstan@charter.net
Pooooooooooooop! We hear you on that one. :)
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