So,
Jules failed the plane test. He desaturated into the 80s in about 2 minutes, turning ashen and scaring everyone.
So, the only way it is safe for him to fly is if he hooks into the airplane oxygen system.
This makes us all very sad because he is just too old to keep hooked into the plane oxygen with a mask or tube for a flight. He wouldn't be able to walk and or get up and that is impossible for a toddler on a 6 hour flight.
So, Jules will not be going with us to merrie's baby's bris in New York this month = (
Today, we had pulmonary clinic.
Jules lost a pound. He now weighs 18.5 pounds. If he doesn't gain weight in the next month, it is G-tube
surgery for him.
We discussed the situation with his tonsils for a while. Even if he doesn't have episodes of APNEA on sunday night's sleep study, our pulmonary doctor will try to convince the ear nose and throat doctors that the tonsils need to go.
We are giving jules an appetite stimulant to see if he can gain some weight more easily this month. Side effects are either a very hyper or a very sleepy kid.
And we are on a new food plan of making him wait 3 hours in between bottles. No one is excited about that or sure it makes sense. So far, not a good experience. He ate his two 200 bottles this morning, took a nap, and threw it all up. So, really not sure why it makes sense to give him such big volumes when we know he can't keep it down. All of us, heidi, scott, and joy are very discouraged and frustrated.
Joy
3 comments:
So sorry to hear about your rough patch - am thinking of you and Jules.
- xox Laura
Oh man, that one read like a punch in the gut. I hope the next weeks bring better news. Hugs from Texas.
Do they know what is causing the vomiting? Toby had the problem when he was on the G-tube that he started gagging when we gave him too much. He couldn't throw up because he had a nissen, so it was just this awful gagging.
I called every ped doctor we knew, none of whom could help. Finally, I talked to the nutritionist at the uw nicu and she said "oh, that's delayed gastric emptying. Give him reglan." We did that, and he never gagged again.
The docs don't like reglan because it has bad side effects in kids (like seizures), but we told him to do it anyway. And it worked in like 3 hours.
Also, Toby had trouble with high PCO2 when we were at children's, and they did something called "bronchial scope" or something like that. he had to go under general anesthesia, but they looked in there and said they found flaps of skin and they lasered them away. It helped somewhat, but didn't fix the problem. But it decreased the PCO2 a bit.
Details are in our blog at jendogger.com, or give jen or I a call and we can tell you what we remember.
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