Since Monday, Camden has officially been off the ventilator all day. Just goes on at nights and we will chill with that for a while and not stress him before surgery. He is doing great with it.
He is also off his albuterol!! No more neb treatments. It is such a small machine compared to most of his things, but it felt great to pack it away. ;) Im just so happy for him...one less thing for him to deal with. =)
We had the upper GI last Monday too. I am still waiting on the blood work results from last week concerning his testes. Hopefully they'll call tomorrow since I have called the last two days. We still go to see the urologist and eye doc before finding out when surgery will be. He is on a slow rate of 80 ml an hour and doing better with that. Having some bad retching moments, but it isn't every feed. Bad days and good days. Breaks my heart to watch it though. I can't wait until this hurdle is over.
Orally he is doing awful. That is basically it. I have been so upset about it and it seems to be getting worse. I try cereal everyday, and he seems to hate it more and more. He is gagging worse now. Today he just lost it and once he gets crying over it there is no more trying. Plus we want to make it a happy time, but how do you do that when he is freaking out and dry heaving ;s ? It seems like such a long road in the eating department, like he will never get there. His spits out pacis and bottle feeding is pretty much a joke too. Now with the surgery I am afraid getting off track with things is going to be a maojor setback.
For now he is hanging in there before getting his diaphragm repaired. He seems to be attached to the feeding pump most of the day and night, but that is what we have to do for him to be able to tolerate it and maintain his weight.
This evening, Marcus and I took the kids on a bike ride in the neighborhood. Camden loved his stroller ride. The weather was so cool and nice and he was just checking everything out. Never fussed and was a sweet boy. Thankyou God for giving me this joy in my life!
Subscribe to:
Post Comments (Atom)
He will get there! Feeding is horrible and frustrating and nerve-racking. But it does get better. I never thought I'd be saying that after all that Carter has been through. If you ever want to chat about feeding, feel free to email me heelsgirl2001@Yahoo.com
ReplyDelete-Kellie
Amen!! great to go on a bike ride!! love it!!
ReplyDeleteive been thinking of you and camden everyday!
we love you!!
Hey Dev,
ReplyDeleteThinking of you and Camden and the family very often. My heart goes out to you. One thing I do know, God hears and answers prayers. Some quick and some slow and some very very slow but He does answer. Y'all are doing a great job with Camden. Don't ever forget that. I read this morning in Ephesians 6 vs 10-18, keep on your armor everyday. The enemies tactic is discouragement. He is isn't going to win this fight. Too many prayers are storming heaven.
Luv ya,