"We are going to focus on LIFE for Katya. I believe, one day, she will amaze the world."

Dr. Ben Carson on Katya Dueck

Wednesday, June 24, 2015

Begone, Tonsils!

Up until the last two winters, Chad was my healthiest kiddo. He rarely ever had even a cold. Then a series of infections felled him, and he developed not only asthma, but enlarged and "boggy" tonsils. When he would recover from one illness, the tonsils would not really recover before he would get sick again. By this past winter, the tonsils were so large and painful all the time that we accepted our PCP's offer of a referral to a pediatric ENT and set up an appointment.

At the appointment, the ENT decided to order a Sleep Study before he would agree to surgery. So we had to wait to get that done, then wait for it to be interpreted, then wait some more until Chad's approval for surgery moved through the system and we were called for a surgery date. Meanwhile, Chad struggled to get even food down many days due to how swollen his tonsils were. I was worried too--as bad as they looked some days, I couldn't imagine what would happen if he would have even a mild reaction to something and have some slight throat swelling!

Meanwhile, Chad's desire to get those pesky, miserable things gone grew stronger and stronger. Like he told me so maturely one day, "If I don't get these out, I have no end in sight to my misery. When I have surgery, I'll be miserable for awhile but there is an end to it!"

So Monday he was right ready to get up at 4:30 AM and head to the hospital! He was a champ through the whole entire process, including a one night stay there.

Chad Waiting in the Pre-Op Area



The surgeon told us post op that fully 60% of his airway had been compromised by the super enlarged tonsils and adenoids. Given that he was in **much** better shape Monday in terms of swelling when he went into surgery, than he had often been this winter, I shudder to think how compromised Chad's airway was during those times!

The surgeon expressed hopes that Chad will have an increase in his energy and health now that those nasty bits are gone from his body. Yes, we are well aware that the tonsils and adenoids are important and intended to be a part of the body's immune system, and all the rest of us have ours and hope to hang on to them permanently, but for whatever reason, Chad's broke down and were no longer helping his life. Rather, they were hindering it, as our PCP explained that when they continue to stay enlarged and full of pitting, they actually harbor bacteria that can easily overwhelm his immune system at any time. Also, they were impacting his ability to breath well while sleeping, creating sleep apnea which further harmed his body and health. So it was time to evict them and hope for a better future!

Chad, post-op.

 
Chad's surgeon wanted him to spend one night in the hospital to be monitored. Chad was a champ about starting to take ice chips as soon as he was awake and then moving on to a popsicle and then dairy-free sorbet and so by supper time he was allowed to eat some soft foods and progressed to being able to get up and go do a craft because he was doing so well! Everyone was very proud of him!
 
By the next morning, Chad was doing so well he was discharged and allowed to go home so we got home soon after noon.
 
Discharged and Ready to Go Home
 
 
Now Chad is recovering at home. He says today he does not feel as well as he did in the hospital but we were warned that was to be expected, so we are just keeping up with fluids and pain meds and hopefully in a few days he will feel a lot better. Meanwhile, Kristina is reading books to him and whoever can snuggles and watches movies with him, or we find other things to try to distract and entertain him. We'll get him through this, and hopefully be on the path to a healthier and better fall and winter this year!!

Monday, June 8, 2015

A Serious Prayer Request

Last week we found ourselves climbing over the mountains and heading towards Baltimore yet again.

It was time for Katya to have a CT scan and to see  a handful of her Doctors.

I have processed our appointment last week for Katya at JHH enough that I'm ready to share a prayer request.

We need specific prayers for bone growth for her. In spite of all the many things we have done to try to get her bones to grow thicker again, they have not. Her skull is still half as thick as the average person's skull. This is risky for her and just not a good thing.

It was frankly disheartening to have tried so hard the last year plus to encourage bone growth through diet and Doctor suggested supplements only to be told it had not changed appreciably since her last CT scan. UGH.

Her Doctors were not happy. We were not happy.

Please pray for bone growth as well as protection in the meantime for Katya's brain and for no injuries to her head! Also pray for bone growth in general for her. The Doctor's said her overall bone structure is very petite (no surprise, we knew that). She needs her bones to grow thicker so it's easier and safer to patch the empty areas of her skull. (Yes, we have gotten a second opinion about this, and yes, it is strongly recommended that we get it done due to how large the holes in her skull are, leaving her brain at risk in those areas.)

In better news, the Doctor's were impressed with how much progress Katya had made since her last visit in early December, and were happy for so many good reports from school. Her plastic surgeon enjoyed seeing the video of her participating in her school program--I wish I could share it here but since it has other kids from her school in it, I won't be sharing it publicly.

Thank you for praying for Katya. We really appreciate it.