Day 113....a crazy full week....

Thursday, January10, 2013

Let me get you all caught up.....

**Monday**
The concert was AWESOME!!!!!!
We spent the entire day preparing Dillon for this evening.  Basically eating little bits of high calorie foods all throughout the day, drinking as much as possible without causing nausea, and taking an afternoon nap.  By our 4 p.m. departure time we were as prepared as we were going to be.  We got there very early to avoid the rush-hour traffic on the 2 interstates we had to take to get there, as well as to get a good parking spot so Dillon would not have to walk terribly far in the cold.  I did not want him to be worn out before the show even started.  Dillon was so excited when we walked into the stadium he was actually trembling with excitement....it was fantastic.  "Mom....what if I faint?"   "Don't worry Dillon, I'll catch you, just keep breathing!!"

It was a long night and we were both exhausted by the time we got home (close to midnight) but it was worth every ounce of energy.  The music was great (although extremely loud...duhhhh its a concert....and we both wore earplugs to protect our ears).  Justin Bieber put on a great show.  His set, his dancers, the fireworks and smoke...it was fun to watch.  Dillon says he will never forget his first concert.....The Biebs with his mom on a cold January Denver night, a gift from a stranger....it was priceless.

**Tuesday**
Bone marrow biopsy day with nothing to eat or drink for 12 hours prior.  Dillon's appointment was at 11 a.m. but we had to check-in at 10 a.m. to get an exam, chat with the doctor, get blood work drawn, etc.  On the whole Children's Hospital Colorado is extremely well organized and punctual.   Most appointments that we go to, be it radiation, a checkup, or a surgery, are right on time with very little waiting.  Well, at about 11:45 a.m. we were wondering what the heck was going on because we STILL had not been called in to the procedure room.  Dillon was growing increasingly anxious about the procedure the longer we waited.  I stepped outside our room to see if I could "flag someone down" to ask why we were having to wait so long.  Just about then the nurse came in and said that the little boy that was in the procedure room before Dillon was extremely ill and there were complications and it was just taking a lot longer than expected.  Immediately Dillon and I were worried for that child and his family....how scared they must be, how terrible the boy must feel.  The nurse brought a sedative and a bed into the room we were waiting in.  They got Dillon all cozied up in the bed with a warm blanket and he was able to relax for the next hour while we waited our turn.  At 1 p.m. we finally got called in.  Dillon, as is true to his nature, was nervous but he handled it all very well and came into the recovery room about an hour later.  After the anesthesia wore off and he was able to get up out of the bed, we headed back to the apartment.  Results of the bone marrow biopsies take about a week....so you will hear about those when they come in. 

Part of Dillon's exam before his bone marrow biopsy included talking about his appetite, his nausea, and his weight.  He lost another 3 pounds in the past 5 days....since his appointment last Thursday.  The appetite and weight continue to decrease (he has been off of steroids almost a week) and his nausea continues to slowly increase.  The decision was made that Dillon needed another upper endoscopy and lower flexible sigmoidoscopy (remember he had this done when he was re-admitted to the hospital after his initial discharge?)  This is a procedure done in the OR under general anesthesia.  We were scheduled for an office visit with the GI doctor on Wednesday and the procedure on Thursday.  Basically, they want to look at Dillon's gut and make sure that the GVH is in fact healed.  If it is not, then he goes back on a modified steroid regimen....if it is, then we need to figure out what is causing the set of symptoms that are not allowing him to eat enough to maintain his weight and drink enough to not need IV fluids overnight. The biopsies from the endoscopy and sigmoidoscopy will help with the diagnoses.

We were later informed of the prep regimen that was to take place on Thursday to get ready for the above procedures.  Have any of you ever done a prep for a colonoscopy??  If not, let me tell you, it is not a pleasant experience for an adult who feels fine, let alone a child who has been sick to his stomach for months and has trouble drinking any quantity of fluids throughout the day.  The purpose of this prep is to completely clean out the entire GI tract....i.e. induce diarrhea until there is nothing left but water.  Dillon was extremely upset about having to go yet another 24 hours without eating, in addition to having to take laxatives and drink a bowel stimulant and stool softener concoction every 2 hours all day long.  The discomfort, difficulty, and plain old torture continues for my sweet boy.


** Wednesday**
GI doctor at 9:30 a.m.  As is the usual case, when we walked in they were ready for us and we hardly had the ipad out before we got called back into the exam room.  After a thorough question and answer session...which included many fart and poop jokes (hey, the guy works with guts and butts all day, joking about bodily functions is in his job description)....they cleared Dillon for the procedure and the prep.  Home we go to continue the long, tedious, terribly uncomfortable day of slugging down bowel prep and many visits to the bathroom for the rest of the day (Dillon actually took his first dose with his pills before we went to the doctor's appointment).  Mind you....he was still expected to take his pills on this terribly empty, hungry stomach, along with the (what seemed like) gallons of bowel prep.  He did not get to bed until 10:30 p.m. and was up a couple of times in the night to visit the bathroom.  It was a difficult day, to say the least.  

**Thursday**
We had to check into the hospital at 7:30 a.m. for the 9 a.m. upper and lower scopes.  At 6:30 a.m. when I had to wake Dillon to get ready to go he was nauseous, hungry, tired, and nervous.  This procedure is done in the OR under general anesthesia and Dillon's main fear is that he will wake up during the procedure and feel the pain or discomfort that is happening.  It has never happened, but that is where his brain goes on each of these procedure days.  I am little comfort to him but we try breathing exercises and distraction.....love the ipad for these times.  We played several games together during the wait before the procedure and it helped the time pass with less anxiety.

The GI doctor came out about an hour after the procedure began and told me that everything looked good and Dillon did well.  There were no obvious problems that she could see, such as ulceration or erosion, so we will have to wait for the pathology/microscopic reports to come back in the next few days before we know what is going on in there.  A few minutes later the anesthesiologist came out and told me that Dillon was awake and I could come to the recovery room to be with him....but she was concerned about a cough he had developed DURING the procedure.  My heart began racing instantly but Dillon has had a chronic cough since the beginning of his diagnosis so I was not too concerned (at least that is what I told myself)....until I walked into the room and heard the cough.  OH MY....that is a terrible sounding cough, nothing like what he had before, and it is constant and unrelenting.   I instructed the anesthesiologist to call the BMT doctor and ask their advice because I was terribly concerned by the sound of this cough.  The BMT doctors talked to the nurses in the recovery room and then also spoke to me via phone.  They wanted to do some tests to rule out anything serious going on (I.e. flu, pneumonia, or aspiration during the procedure).  She said we needed to do a nasal wash (which involves sticking a tube up Dillon's nose and sucking out a bunch of mucus from way up in his sinuses), as well as a 2-view chest x-ray.  Dillon panicked because the only thing he hates worse than needles is having a tube shoved up his nose with a loud vacuum suction sound coming from it.  The nurse was concerned about Dillon's anxiety and I told her that the faster she got it done the better, because the more time he had to think about it the more scared he would get.  She whipped out the supplies and did the nasal wash in a very effective and efficient manner....and Dillon immediately calmed down.  Now he has to continue recovering from the anesthesia and go downstairs to get a 2-view x-ray.  All of this took quite some time and the poor kid was exhausted by the time we got home.  He ate a few bites of a lemon bread/pound cake and few sips of apple juice, a handful of pills, and he fell into bed.  He slept for 4 hours this afternoon.  A new boy emerged from the bedroom.....a smile on his face and ready to eat.  After a bowl of cereal and some sparkling grape juice he decided he wanted some miso soup and I insisted on a protein component so he chose chicken lettuce wraps.  There is a fantastic Asian restaurant right around the corner that delivers.  We enjoyed dinner together (of which he ate only a little, his favorite being the miso soup and some hot green tea) and watched some basketball and cooking shows on T.V.   

We did get a call with the results of the nasal wash and the chest x-rays.  The nasal wash was negative, so no virus, flu, fungus, nothing.  The chest x-ray was completely clear; in fact they compared it to the last chest x-ray he had (which occurred when he was still in the hospital) and they said his lungs are much healthier than they were when he had been basically bedridden for weeks.....so the transplant has not negatively affected his lungs long-term (i.e. no GVH in this organ) and his increased mobility, walking, and activity have healed his lungs beautifully.  YEAHHHH!!   Oh .....the cough has improved significantly over the past few hours....so they think it was just severe reflux and irritation from the breathing tube and scope that was shoved down his throat today :))

Tomorrow....Friday.....no appointments, no procedures.  Hopefully a handful of test results.  Dillon's plans for the day..."I am gonna sleep in!!!"

As I re-read this I realize I am rambling a bit and it is a lot of information all at once...maybe jumbled up in the way I presented it.  Sorry about that.  Your are going to have to muddle through because my "creative genius" is taking the week off :)))