That basically describes Caed when getting any medical treatment these days. He has always been very brave, but the older he is getting...the MORE we are seeing this in him. Thursday he had to get his monthly B12 shot, the "big draw" of labs (9-10 viles), and then when the surgeon began burning and cutting on his incision....nothing. No reaction, just sat stone cold. Todd went with him and said the nurses seemed more nervous doing these things than Caed was!
Now, we wait.
In the meantime, we will start back burning the tissue with Silver Nitrate every few days. (hopefully it will work this time!) Dr. G did not feel the site was infected, so that is great news. We will go back to see her in 2 weeks. I'm certain we will hear something from our IRP team in Nebraska concerning Caed's labs. There has been talk that his body is not absorbing well (or deficient in certain areas); therefore, his body is having a difficult time healing (incision).
Caed has been OFF all feeds for the past 6-7 weeks!! The plan from our time in NE this summer was to wean him this fall and then see how he does "feed FREE" for a few months (checking labs along the way), and then hopefully have tube removed in the spring. This would be HUGE! Caed will have had his feeding tube 4 years. Unbelievable....when I think back on it all. However, if he is having these recent issues due to malabsorption/deficiencies, then we will probably look at some kind of daily supplement. (similar to nightly feedings, but rather taken orally) We are praying he won't have to go back on tube feeds. I keep reminding myself there are worse things than being "hooked up" at night, but.....this really would be such a relief to just have that thing GONE...once and for all!
One definite blessing throughout these past 4-5 months in dealing with his incision has been he FEELS GREAT!!!! Caed is the same active, funny little boy as always. He has not been in any pain (other than emotional at times), which is a huge praise....not to be taken for granted. Thank you all for keeping Caed in your prayers...again! He will get through this.
3 comments:
We can relate to the wanting to be line free. Gabby commented just now as she was getting out of the shower & pulling the bath guard off her central line "I can't wait til this thing is gone". But as much as I want it gone I am also afraid to see it go! It is a type of safety net! I worry about her growth and getting what she needs for proper development. Things we all face with SBS kids. We are always happy for any progress and pray Caed continues to thrive!! The Drews
Thanks for the update. We've been praying like crazy for this little man. Praise God for the feeding success. He is so big and can heal with a word. We pray that for Caed.
Lori tonight my co-workers and I prayed for healing for Caed. We will continue to pray for God's hand in his healing. Miss you guys!!
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