Good News

Zack had his appointment with his GI today at Walter Reed.  It was the first time we had seen him in person in awhile as Z is now in a place where we can manage a lot of things by text and phone.  How cool is that?  With all of the issues Zack has been having over the last month, it was time to have him checked out.

We talked about Zack’s prolapsing, obstructing, swollen stoma and lack of output.  For whatever reason, it seems as though Zack is one of those chosen few who do not tolerate Cholestyramine well.  I guess someone has to have those “rare side effects” listed on the medication printouts…why not Zack?  We talked about some of the ways the medication may have been causing him to intermittently obstruct.  The good news is that since discontinuing the medication, Zack is feeling a lot better.  His doctor did not have another medication to try at this time.  Although having high output and low sodium is not ideal, we have a system in place for watching it and for trying to keep on top of replacing his losses.  We know how to tell if he is not doing well and when to take him in to be seen.  We have done it for three years, so we will just keep on making it work.

Zack’s weight was still a bit lower than what his doctor would like.  He is up to fifty-four pounds which sounds like a whole lot to me.  His doctor told me that Z did not gain weight between the ages of eight and nine.  That is not really surprising when I think about all the hospitalizations he had during that time.  This year he has gained weight, but not at the rate he would like to see. Beginning tonight we will increase the amount of his overnight feeds and hopefully that will do the trick.

Today was supposed to be a blood draw day for Zack.  He has been working hard with the therapist he sees for Medical Trauma Therapy to get ready for this big day.  They have progressed from talking about blood draws, to watching videos, to simulating the event with an empty syringe and tourniquet.  Zack told his therapist on Monday that he was not at all afraid and that it would be “a piece of cake.”  He decided a bottle of Gatorade would be an appropriate reward for being brave and requested his favorite nurses do the testing.  You will just have to believe me when I say this is a HUGE improvement and that I was very proud of him.

Imagine our surprise when his doctor said that Zack looked so good today that he did not feel that he needed any labs!  While I am always glad to hear that, I almost wish Zack would have gotten labs today so that HE knew he could do it.  Almost.  Have no fear, he still got his beloved Gatorade!

On our way out of the hospital we were able to see a few special friends.  It always makes Zack’s day (and mine) to say hello, especially as an outpatient!  To make a great visit even better, one of Z’s favorite nurses had a special gift for him.  He was so excited he could barely stand it and could not wait to get home to build it.  Here it is:

img_6465Once again, things are looking up around here.  We will be home for Christmas this year with no planned procedures or surgeries.  Zack’s big brothers will be coming home from college soon and we are looking forward to a quiet December.  Fingers crossed!!

Hug your babies!

~ Dawn

 

 

 

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