Good news first:
He gained weight over the weekend 16lbs 4oz. 25 inches and he is FINALLY on the charts!!!! Only in the 3rd percentile for weight and just under the 5th percentile for height but I am just pleased he finally made the chart!!!!
Not so good news:
Pedi first:
double ear infection (yes he did just have tubes placed) doesn't seem to matter
Pink eye both eyes still not going away so continue with meds for that (cause he's on enough meds already)
Pulmonary:
O2 will not be adjusted down what so ever for at least 3-6 months and that depends on how things are when we go back. :(
This is sort of depressing I'm not sure thats the right word to use but it sucks (better word) for him because he absolutely HATES his cannula so we fight all day long with that and his pulm. doc said it is VERY important that he has O2 24/7 no excuses. During tubbies EVERYTHING! It makes his developement slower because he has so much trouble with his breathing... Its just sad for him. But he is strong and its for his benefit. (notice me convincing myself here)
Then as you know from previous posts, we have been watching his blood pressure... WELL they took it today as they now always do with him and it was THROUGH THE ROOF!!!! 114/74. Doesn't sound bad for an adult but for a baby this is very high... Concerning to say the least. So for now we will still watch but I now have to bring Bryce to his pedi 1-2 times more per /wk to have BP taken. Then we will compare notes form pedi and pulm and decide what next. So in addition to the million dr appts he has every week we now have to add these in which is ok because again for his own good, but if I had some NURSING she/they could do it in our house and I wouldn't have to expose him to all the germs in the doctors office! Plus he doesn't travel well so thats a pain too. 1-2 O2 tanks, diaper bag, car seat, baby, purse, pulse ox.. all weighing 5 lbs or more each.. I bet my purse is about 40 itself.... :)
And some bad news for my sanity: Pulmonary told me that my son is a bit spoiled with being held (which he is, I admit it) and that its time to stop.... SOOOO this means I have to let him cry... For a long time... Hmmm any advice on how NOT to go crazy?????
OK so thats my complaining for now... Time for sleep I guess.
Oh and Thanks to everyone who has already shown interest in supporting us in the walk and to those who will! :)
Not sure what the issue is but spell check still won't work and I'm too tired to know if I misspelled. Sorry.. I weally am smawt> :)
Look at his little face... even sick he smiles! I just LOVE this baby!
3 comments:
Erika,
Man oh man do I know about O2. But for some reason my poor kid doesn't even mind his cannula and even with time off (FINALLY) he doesn't care when I put it back on. Not sure if he's used to it, or just an easy going kid?
HAHAH Dr, K said he's too spoiled? How does he know that?!
As for nursing it's BS! I swear I need to help you get it. You have SOOO much going on. You should really appeal the decision...it makes no sense and seems like it's discriminating b/c he didn't come HOME on O2. He is O2 24/7 with no set time to wean, on meds, has BP issues, gets sick like all our kids do, this affects respiratory. You guys soo deserve it. I want to call and tell them to give some of our hours to you guys!!!
It's cool you're updating so close together...lol. I know you're super busy with 3 kids, one being a preemie, but I LOVE to get updated about Bryce. He is way too cute!
Hope he feels better soon!
Erika,
Don't get discouraged. I can't say that I know what you are going through. Only someone that has the same situation can do that. You have a lot of family support around and that is something that not a lot of people have. I keep saying that you are a strong person and I really mean it. I cannot even imagine all that you have gone through. I don't know if I would have the strength. In addition to taking care of three children, you still find time to work. It is amazing what you have accomplished in the past 10 months and even before. Keep trying to get nursing services. You really deserve it. Even if it is just an hour or two a day or every other day. They should be giving you something. Keep up the good work.
Sandie
Aloha, my name is Yani, mom to 24 weeker Samudra (Sam). I am a friend of Shanon (Kansas). I saw your blog from her blog. Your baby looks so cute. He is almost 1 year old, just like my baby boy.
Take care,
yani, Hawaii
Post a Comment