Claiborne Update & Some Prayers

So it has been awhile since I've given y'all an update on Miss Claiborne! We had a great summer, only 1 ER visit back in July, I count that as a win! C has been so happy this summer, she is gaining weight and doing her best to try and eat us out of house and home!

Also in July she had her third MBS (modified Barium Swallow) done. As usually Claiborne knew she was being "watched" and did not do any of the things we normally see from her when she eats! The little stinker ever stopped aspirating as she fatigued which shouldn't have happened...we were able to figure out that because of the way she was sitting she was bending her neck down to protect her airway. While smart on her part it left us without a great picture so to speak of what is happening when she eats or drinks.  We did see that she is backing up food in her esophagus when she eats solids. After watching her study her GI called and said the next move would be to look into motility problems, something he does not do.

 So after her Dr's message I must admit that I did not call him back right away...I mean she was doing so well and I honestly wasn't ready to add another specialist into the mix.

Spring forward to last week...Monday I finally took C in to see her GI DR to not only have a follow up but also talk about motility. First of all he thought C looked fantastic in regards to her weight! Now onto the discussion I had been hesitant to have...a new pediatric motility gi DR had recently come to Richmond but not only had I heard negative things but C's DR said he wouldn't refer us to him because all of the patients he had already referred had called back angry and upset. So I thought oh ok we will go to UVA, nope, the closest place that has the specialist that she needs is Children's Hospital of Philadelphia. That was a shock! He told me to go home, do my research on the DRs and that he would make the referral when we were ready.

Tuesday we had Feeding Clinic, which is probably Claiborne's favorite day of the week. Her therapist let her try drinking thickened formula from a straw...she immediately started choking and we could hear a clunking sound as the liquid moved down to her stomach. Now, I have heard this sound before, anytime she would get water in her mouth either form the tub or pool it would make this sound. We immediately stopped, I think her therapist was trying not to scare me because she remained pretty calm and said she would talk to the head NP the next day.

Wednesday night I got a voicemail from the NP saying they had gotten me into the DR here at VCU, Mack and I decided to talk with her GI in the morning before making a decision. The NP called again Thursday morning at 6:30, now I was kind of freaked out, I mean were they that concerned with what had happened Tuesday that they had pulled all these strings to get C in? We talked with her DR and he said we should at least speak with the DR and that we can always get a second opinion. So we have that appointment next week.

Thursday night I pulled C out of the bath and noticed she had an abscess right by her tube, I quickly sent pictures to her nurses who said we should go to the ER. I also talked to the GI on call and we decided to try warm compresses and go see him 1st thing in the morning. She once again has a staph infection so she is back on Cipro...ugh poor girl can not catch a break.

That brings us to tomorrow, tomorrow Claiborne will have her GJ tube changed out for a new one. This should have been done back in June or July but we were all hoping that we would be putting in a G tube which is not happening. We also ran into trouble when trying to order a new GJ tube through the home health companies and ended up having to order it directly to the hospital.  This procedure is done by Interventional Radiology and she will have to be under anesthesia which will buy us at least 1 night in the hospital. 

So please send us some good vibes that Claiborne's procedure goes well and also that her appointment next week goes well also.