NIH Summary letter

The NIH summary letter has said that Macey's GI complaints don't fit with typical CVID gut abnormalities.  They believe that the amount of steroids she has been on have allowed her gut to look better but rarely do they see complete healing.  The colonoscopy they did at NIH revealed no inflammation.  They are suggesting that she see a motility specialist either in Ohio or Kansas.  Motility is not a new problem for Macey but something we thought had resolved.  The letter does mention that trialing her on the Asacol might help with current symptoms but trying any harsher medicines wouldn't be beneficial.  I am going to ask the local GI doctor if we can wean her off the Entocort steroid over the summer.  Unfortunately one clean scope does not zero out the other scopes that she's had showing inflammation.  Especially with NIH's inability to prep her correctly.  Should make for a fun summer.

No news

Still waiting. Peak flows are better but fatigue is still bad.  Some additional results from NIH were faxed to me.  It looks like the nodule was benign. There is gastritis in her stomach and duodenum but no reason why.  She was negative for H.Pylori which is usually the reason people have gastritis.  Colon doesn't look any worse and the Entocort (steroid) seems to be working so she'll stay on that.  There are still cytokine and HLA tests that have not come in.  I'm not sure what these are but the Immunologist ran them while we were there.  The GI is writing his report and will suggest what he thinks is going on and what might could be done about it.  I think for now I would just like some medicine that would calm the stomach aches for her.  I'll post again when the final report is sent.

Look out W.R. there's a new driver in town

Needing neb and rest

When I picked Macey up today and asked her about her classes she was very sketchy.  Then I asked her how band was and she said she was getting light headed when she played her flute.  Seems this has been going on for a couple of days.  When we got home I had her do a peak flow and it was 280 (personal best 340). So I called Dr. Barroso for a refill on her Xopenex and Intal.  I'm going to have her take a neb treatment this afternoon and before bed to see if that helps her fatigue and taking a deep breath.  

She hasn't needed a neb since those last pneumonias.  Just hope this nips things quickly.

NIH Day 7 - Last Day

Our last day at NIH Macey was released around 9 am and was bound and determined to get to the Zoo.  Now after our experience at the Aquarium (all 2 hallways of it) we weren't expecting much.   Especially since it was in the city and free.  

We  collected our bags from the Children's Inn and left them with the transportation area at the hospital in a cabinet/locker.  The taxi that the study nurse had set up for us would be at the clinic at 3 pm.  So we headed from clinic to the Metro and rode to the Cleveland Park station. 

This is the neatest suburb/neighborhood I've seen in a while.  I really enjoyed walking through there.   It had our bank (wish we had known about it the day before because it wasn't as far away from clinic as going completely into DC) and a CVS and of course Starbucks.  Plus a ton of other neat restaurants, stores, and the Zoo.  The Zoo metro stop is about the same walking distance to the Connecticut Avenue entrance to the Zoo and parking is limited and expensive ($7-12) so they encourage mass transit to the Zoo. When we go there at 10 the parking lots were already full.  During the  summer it opens at 6 am for walking around and the houses/exhibits open at 10:30.  Lots of food offered but you can also take in picnics and they have plenty of tables and green space to have the picnics.  Really a great experience and definitely something we'll go back to when we return to NIH. 

While we were at NIH they spoke to us about Les participating in the same CVID study as Macey.  He was consented while there, went through admissions and now has a medical record number and will be returning for his own study.   We made it back to the Medical Center metro station with minutes to spare, caught the shuttle to Building 10 and jumped in the cab.  We had plenty of time in the airport and grabbed a bite then headed for Atlanta. 

We were able to come in on the tail end of Katie's play and thankfully have tickets to Sunday's matinee.  All in all I think the trip was very beneficial and look forward to seeing what they  can do for Les. 

NIH Day 6

Day 6 consisted of the waiting game.  to put it delicately we were doing a collection of "something" and that's pretty much it for the day.  Around 2:30 the GI doctor and Immunologist rounded to do a final wrap up of sorts.  There are several tests that are still not back and won't be until next week (when they'll be at a conference then). But what we do have back so far is this.  When Macey first arrived a culture showed that she had a bacteria in her gut that might have been causing some of the pain.  The test for the bacteria is done a different way at NIH than Macon or Atlanta so it's alittle more sensitive. She is on 2 weeks of antibiotics for this.  Then the labs showed her nutrition was good and blood counts were fine.  We have one lab to follow up with in Atlanta that shows she may have a problem with alpha 1 antitrypsin deficiency.  A follow up clinic visit at Egleston and an office visit to Dr. Israel in Macon should help decide if this is a problem or not.

The slides from the nodule in her esophagus and the stomach and colon biopsies are not back yet.  Plus they are going to look at certain chemicals released in the gut.  So she came home on one new med and will stay on the steroid and possibly add back the Asacol for her IBD (GI at NIH thinks she needs to do this but 

will write it up in his assessment so Dr. Israel will reorder it).

After the doctors came by Les and I headed to town to do something at the bank and eat dinner.