Friday, August 12, 2011

 
I think I jinxed us when I said this was the easiest phase because this stay has been so different.  Each day I continue to get more worried about Sky.  His fevers have been getting up to 104 and are becoming more frequent.  One time the Tylenol didnt even bring it down and he is also getting really bad chills with them and he is starting to look "sick" when he is spiking.  His blood cultures continue to come back negative which is good but frustrating because that means still no answer.  Yesterday he went down to RTU for his LP and ABR.  This was scheduled to take an hour but he ended up being under for almost two hours.  Because he was under anesthesia for so long, they had to intubate him and they also gave him a large dose of pain meds and some zofran.  Usually when he goes down for his LPs he wakes up so fast because he isnt out for so long but this time the recovery room was different.  When they let me come back there he still wasnt really awake and wouldnt open his eyes.  He was just moaning and whimpering for mommy.  He was also very croupy sounding because of the breathing tube.  It was much like waking up from one of his big surgeries in the OR.  He didnt do well the rest of the night due to high fevers, chills, and a croupy cough and sore throat.  He slept most of the evening and most of the day today.  Dr.  Lemons decided to put him back on his IV antifungal and back on one of his IV antibiotics that will be given every 8 hours that we will continue at home.  I have been stressing my concern that something is just not right and they are actually listening this time.  He is scheduled for a PET scan on the 24th which will hopefully give us some more insight.  They have been putting this off because he has been irradiated so many times from all of his scans that he has had in the last year that from now on they dont want to scan him unless absolutely necessary (which I think this is at this point)

As far as the hearing test result goes we got some good news.  His hearing loss isnt as significant as they thought it was.  He still has loss in both ears requiring hearing aids but it isnt as severe.  He was fitted for them while he was down in RTU and was able to pick out the color he wants for his molds, he chose blue.  He says its his new favorite color now (its uncle Ty's favorite color so I think that thats why its his now too)  I cant wait until we can get these for him.  It will be nice for him not to have to work to be able to hear things.

This was when the anesthesiologist was about to push in the "sleepy medicine"  Skyler was so scared this time because he told me he had to put the breathing tube in right in front of Skyler.  Skyler knows all about breathing tubes and is scared to death of them because he remembers being intubated in the PICU.


I like the RTU because I am able to hold him while he falls asleep, but I hate the feeling of feeling my son all of a sudden go limp in my arms.


I also dont like the fact that I have to leave him looking like this...

8 comments:

Rachel said...

Praying that things take a turn for the better for Sky! Stay strong Mama.

Shaylynn;) said...

I just wanna give you a hug. You're a brave brave mother, and have been blessed with a burden that so many never will understand.

Bless both of your hearts. Always.

Haylee said...

Lots of prayers and love coming from the Gunnersons!!

nsudburyfam said...

Thinking of you guys...ALWAYS! I hope tomorrow is a better day. I wish those fevers would just go away!

-Mystee

Brandi said...

Thinking of you constantly and sending many positive thoughts your way. Hopefully tomorrow will be a better day and you will soon get the answers you need. Much love.

Susi said...

:( Praying for you and Skyler. So many people love you guys. What a brave brave boy. Hugs and prayers!

Tonya said...

I am so sorry to hear about your latest setback. My heart is breaking for Skyler right now. He is truly the strongest little boy. We are thinking of you and praying for both of you.

Kristin said...

Crystal, reading this just makes me so, so sad. Skyler and you have been through so much, I just want this mess to be over for you both and become a bad memory. Know that you are loved and prayed for, both of you.