CFC Campaign

Combined Federal Campaign (CFC) is kicking off here at Robins AFB. If you're unsure of who to contribute to consider the Immune Deficiency Foundation (IDF). Agency Code # 10313

so the squeaky wheel gets the oil.

Dr. K emailed me tonight around 7 pm to tell me that the NIH doctor had spoken to her today.  Of the three levels that were high initially in May two have resolved and one has not.  So we will restart the steroids for her IBD and hopefully not have to move on to stronger anti-inflammatories.  Best news is that they truly think her gut disease is not at the point of needing immune suppresants and we are so happy for that.

The new news is that they are really pushing to have her see a motility specialist because they think the gut pain is due to her nerves being messed up.  So they have given us the choice of going to New Orleans or to Columbus, Ohio.  I believe that her motility issues resolved when she was younger but they think it is still a problem.  So they will be making the referral and we will just wait until all the information comes in.

Both motility doctors are familiar to me from when Macey was younger and had to have her cecostomy tube for several years.  We have done a good number of motility tests both here in Macon and in Atlanta but there are some more specialized tests that only certain motility clinics are equipped to do.  

So steroids will restart tomorrow and hopefully her energy and stamina will return.  Her weight has leveled out at 100 lbs even and so once her stomach pain is gone she will be pretty set for now.

Oh but by the way she does have a sinus infection right now and is on antibiotics for that.  Never fails.

Another week

Still waiting to hear on the specialized testing from NIH.  The labs from Macon were within range.  Macey's appetite is still down. She thankfully was able to participate in band Friday night at an away football game.  Her dinner she ordered earlier in the week arrived with extra fixings and unfortunately the damage was done to the meat.  She didn't feel ok to eat it and thankfully found something else someone had brought.  

She is trying to keep up her study schedule but her grades have taken a small dip due to so much napping and stomach ache during school.  We're looking at what to do if her weight can't rebound or her energy doesn't improve.  Weight is still holding at 97 lbs.  

Please pray for increased stamina, pain free school days and the ability to stay off homebound schooling.  If it weren't for band I believe she would go to it tomorrow.

Cruddy Monday

So making it through 2 full weeks of school was truly amazing but eventually the schedule caught up with Macey and she gave out. Today was a wash for her.  The weekend took its toll and we went back to see her pediatrician who immediately ordered bloodwork.  

Macey's weight in the office was 98 lbs and it was concerning to see how off balance she was a tired looking.  Her poor lips have taken a hit probably due to dehydration.  The labwork that was ordered will show if there is any problem with her hemaglobin or platelets. Her chemistry panel will help us know how the sudden weight loss has affected her nutrition and if she needs any help in that area.  There was also a test run to see how inflammed her body is.  

When these labs have come back we will either start new treatment or be in touch with the National Institutes of Health (NIH) to schedule a return visit for another scope.  The labs are something they will ask for anyway so we decided to cut to the chase.

I am sincerely praying that Macey can stay at school this semester and not return to homebound schooling like she was on last Fall.

FWD:

home sick. seeing dr barroso at 2 pm

Weekend gone

The weekend has been a 50/50 crap shoot. Friday night Macey was able to take in a movie with several friends but unable to eat before or after. I think she did snack at the movie but no true meal. Saturday her stomach was upset with her and she spent more time in the bathroom. By Sunday she was very tired, still had an upset stomach and rested most of the day in bed.

We will be calling to have her see the ped tomorrow. We will need to exhaust all possibilities here before I am comfortable calling NIH and letting them know she is symptomatic again and losing weight. They have already said that she will need to come back in when that happens. New weight today was 97 but also a headache was new. She is also having pain throughout the day and not just with bathroom visits.

Can't anything ever be simple?

So at this moment I'm not really sure what is going on with Macey.  Two weeks ago she had the dental procedure and afterwards had some nausea and vomiting but it settled down after a few days.  Then she had a recheck with the surgeon and he said everything looked good. The next morning she woke up with this awful pain in her upper palette and down at the bottom of her throat.  This went on for about a week and her weight started to gradually go down because she refused to eat anything solid.  Finally when another week had passed and her weight was under 100 I took her to the pediatrician to have things checked out.  The ped found a yeast infection in mouth and some inflammation at the back of her throat but otherwise nothing.  Macey started seven days of Diflucan for the yeast which the ped said could be aggravating a traumatized area at the bottom of her throat and that might be why it hurt so much.  She also was prescribed a Magic Mouthwash concoction and we hoped that would be the end of things.  

Another week has passed and Macey's eating is still not what it should be. Her weight is still under 100 and she is slowly clearing the yeasties from her mouth.  Her upper palette has always looked fine and she does say it is slowly not hurting as much.  The pain in her throat has moved to the back where the pediatrician saw the redness so at least it is easier to evaluate (as opposed to way down her throat which is impossible to look at without a scope).

She says things are getting better but meat is still difficult and also seems to make her stomach feel "yucky". I'm letting her slide on that one but definitely pointing out the need to let me know if she's in the bathroom more.