Kenli had a great birthday! She spent the day with Hunter and had a blast. It was a busy day! Bouncing Tiger, mall to build a bear, Menchies, birthday cake at Mimi's house. Whew! She had a fun time! I decided no birthday party this year, so I did a day of fun instead.
It is possible Kade will have surgery this week or next depending on what the surgeon says about his ostomy (the part that they put the bag over). They are not able to keep the bag on his stomach successfully without it separating because his stomach acids are eating away at the material. This in turn requires a new bag to be put on him each time they go to change him, and it has gotten to where they are changing his bag 4-6 times a day. A bag should last at least a whole day. The problem with this is, each time they take the bag off, it irritates his skin more and more. It is so bad that now it is bleeding every time they change the bag. The nurses agree with us that something needs to be done NOW...not in a couple weeks. There is NO reason that he should have to be in pain. It's like pulling a band-aid off of an open wound. UGH! It hurts me so bad to see him like that. They have tried every bag all kinds of ways and still can't seem to get it right.
Anyways, when Kade had the bad surgery on 11/20, it was told to me that they would consider reconnecting his colon back inside to his intestines within at least 6 weeks. Well, 6 weeks would be on Sunday. I know they want it to have all healed up and I DO NOT want to rush anything! I certainly don't want them going in and reconnecting something too early before everything is healed up nicely. This is also the nurses and Neos talking. The surgeon makes the final call. They are coming look at him tomorrow will figure out something.
Also, he got his 2 mth shots today and didn't feel too good this morning. He was running a little temp and sleeping a lot. He got a visit from BB and Papa around lunch time and was swinging in his swing and very alert. Then he got the hiccups and put himself back to sleep. When I got there around 3:30, he was WIDE awake in his swing, not even swinging....but he was CHOMPING on his hands and sucking his thumb! It was so cute! He finally found his hands!! The only problem with that is when his thumb finds his mouth, his index finger finds the tube in his nose and he tries to pull it out.
He is weighing 9lbs 1oz right now. So he is gaining weight and that is great! Since they have increased his feeds, he still isn't "dumping". He is taking the 17ml by bottle now and the nurses said that he acts like he wants even more! :) He is doing really good with the eating, but it all comes down to what HE can tolerate. Just praying my heart out that he can tolerate his feeds. I just don't want him to go backwards. So far, we have been progressing forward, but I understand (like the doctor told me a couple days ago) that he will go backwards at one point because he will eventually reach his limit to how much he can tolerate.. :/
Anyway, I think that is all there is to report. I am supposed to hear something on audiologist tomorrow and the surgeon. Hopefully, I will have good answers on what we are doing for him. Although, it is sad to say, but I don't think there are "good" answers for him right now....because we are just avoiding the inevitable...having more surgery. So, please keep all of us in your prayer! We certainly still need them!!
Thanks again so much!!
xoxo
G
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