Both boys look like they've responded to the Pneumovax23 vaccine:
BRICE
Pierce
We follow-up in December for more labwork - fingers crossed their levels remain stable! If not, IVIG talks will resume. But for now, we are loving the fact that things are looking positive!
A very cute little redhead that made me a mommy had a birthday on August 28 --- we had a blast! Brice's party will have a post of it's own :)
Speaking of Brice, he saw ENT today and is scheduled to have a tonsillectomy, adenoidectomy, bronchoscopy and laryngoscopy in mid-October. Our ENT said that Brice's history has way too much substantial evidence in support of the above surgeries/procedures, He is fairly confident that Brice stands to benefit quite a bit from having his tonsils removed. Given B's history with pneumonias, bronchiolitis, wheezing, croup, etc, he wants to scope his airway/lungs to make sure everything's ok. He doesn't anticipate seeing anything off per say but since Brice will be under general anesthesia, he said he may as well do it now.
We were in the ER last night with Brice... he has a pretty nasty case of croup :( Poor kiddo is in quite a bit of pain and his cough makes my lungs hurt. He started with a low fever (100*) on Sunday evening. I gave him a dose of Motrin to prep for a nighttime spike... 12:15am = 103*... 6:45am = 102.3*... 11:45am = 102*... 5:45pm = 102.3* --- between his Motrin doses, he would stay in the 101s --- in the ER, around 11pm, he was 103.8*. They did a chest x-ray (and included his neck in the field) --- no focal pneumonia (!) but it did show some viral patchiness in his lungs and steeples sign (consistent with croup). They administered a dose or OraPred (oral steroids) and gave an Rx for two more doses. Today was rough on him... any time he coughs, he cries. He sounds like he is wheezing but apparently it is stridor since croup is upper respiratory. He is hoarse but fever free as we speak :)
Pierce had a GI appt today - some other doctors on his case were marginally concerned about his lack of weight gain but his GI isn't. Pierce had a swallow study on August 23 --- it showed pooling in his valleculae - the good news is that he clears it with a swallow... the not so good news is that it puts him at a much higher risk for aspirating. The speech pathologist noted that he has inadequate tongue base retraction. Dr. A said this is unfortunately something he can't fix and that will never fix itself. Pierce will eventually learn to accommodate this issue on his own - he will probably eat slower, etc. We have a follow-up swallow study in November and Dr. A plans on repeating swallow studies every 3-4 months for awhile. For now, we are thickening and fortifying his feeds (5oz coconut milk + 1 scoop of Neocate, Jr + 1tbsp oatmeal). He is not allowed to drink out of straws as it presents liquid at a greater force of speed and really ups his chance of aspirating.
Overall, Pierce is doing VERY well. He climbs non-stop and has an amazing amount of energy for someone that is barely 24lbs and 32" tall! We are amazed at his ever-expanding vocabulary. Lately, he gives the BEST squeeze hugs and big open-mouthed wet, sloppy kisses!!
Brice started school --- another post of it's own --- he goes two days a week from 8:45-2:45 and L-O-V-E-S it!! I have days where I just stare at him and think "you're not a toddler anymore - you really are a little kid" - how has time gone by so quickly?! It's very bittersweet - I love the kid he is becoming but I dearly miss the baby/toddler he once was.
As crazy and chaotic as things are lately, I am really enjoying life. I am happy and learning how to fully embrace being perfectly imperfect. It's tough but I have a great group of guys in my life - from the daddy down to the littlest man... life is good.
No comments:
Post a Comment