Friday, February 22, 2013

Thankful Thursday Late

I had every intention of writing this yesterday, on Thursday. A fellow CF blogger Ronnie does a Thankful Thursday every week and from time to time I participate. Today (or yesterday) I need to participate. So I decided to do a Thankful Thursday Friday instead.
I was feeling down yesterday after our CF appointment and my first inclination was to cry and think of all the negative things. It has weighed heavy on me, all of this CF stuff and progression of the disease, and obstacles...but, I need to choose to be thankful. Choose to see the good. Choose to be happy that we have modern medicine.

We had a follow up appointment with Dr. C. When we were there we did some lab work to check his kidney's, pft's, and a head CT.
Dr. C asked Kaleb to step out and we had a talk. A real talk. Something I have been wanting for a while, but I was unprepared for this, so it caught me by surprise. But, I am THANKFUL that he spoke to me honestly and openly.
He decided to stop IV's because even though we have not seen a lot of improvement with his cough and his PFT's actually declined from when we went into the hospital, we cannot do IV Tobi anymore because of the risks and we can't just stay on IV's forever. We can't allow his body to overuse them or become resistant to the ones we have left. So I am THANKFUL that we could stop IV's because K and his body need a rest and David and I were able to sleep finally. I wish we would have seen a better result, but I have hope for next time.
Kaleb's PFT's were at 60%. When we went in he was low 60's and his baseline has been upper 60's. In the hospital last week he blew 55% (although a different machine so I am not sure the variance). I am THANKFUL he went up from the hospital. I am hopeful that they will still go up because 60% is too low for my liking.
Kaleb had a head CT while we were there. His sinuses were 100% blocked with polyps. He had his 5th sinus surgery in June. He has never filled up this fast. Usually we get at least 18-24 months between surgeries. Dr. C is very conservative and very optimistic and he told me that this is the WORST sinus disease and infection he has ever seen. Ever. Doing sinus rinses and nose sprays and having surgery in June and being on IV's 3 times since that surgery should not have resulted in what that CT looked like. He is referring us to a new ENT for surgery. At our appointment with this ENT he wants his to suck out some junk from his sinuses to start a culture. Then he wants me to schedule the surgery and before his sinus surgery, he wants to admit Kaleb to the PICU for a day or so and do a bronchoscopy. They will put Kaleb under and Dr. C will go down into his lungs and clean it all out and get a sample of what is growing in there to send to culture to see if we are missing anything growing down there which could answer why he isn't responding well to IV's. I don't believe he has ever had one. He hasn't for sure had one by Dr. C or here. I am thinking back to when were in Cali and he had a lot done in a short time, but I don't think they ever did a bronch. I am interested to see what Dr. C thinks of his lungs and what his cultures show. I am THANKFUL for a doctor that is trying everything he can think of to take care of my boy.
After the initial appointment and the bronch, Kaleb will have another sinus surgery. It is supposed to be outpatient. I will post when we know details and timing for all of that.
Dr. C had lots of ideas on what to do so we don't have to do surgery again so quick. He said he has to wait and see what is growing first so we know how to treat it but he does want us to get a nose nebulizer that will have him do breathing treatments with an antibiotic but it will go straight up his nose. The only issue is that the insurance won't cover this machine and he says it runs about $1,000. I am THANKFUL that I serve a God that provides and I have peace that this will all work out. He is pretty sure the meds for it will be covered as it is just like meds he inhales into his lungs.
Dr. C didn't want to speculate about his lungs and how bad his CF is right now because he isn't sure if the whole sinus thing is just complicating things. We are going to try to figure out and treat the sinuses and junk in his lungs after we get test results and then go from there.

That was a lot for me to take in yesterday and it has been a crazy few days at work with open house tonight and a father/daughter dance I am doing on Saturday, and some basketball games tonight and tomorrow. I am staying busy, but my heart is sad and I struggle with how much I am hating CF right now. It's just so darn frustrating and complicated.

But I choose to be THANKFUL.
For my family, for our school, for our support, for a great doc, for the options and surgery and to try new things, for hope for the future that we can raise enough money to cure this disease.

Trying to be thankful despite this news.
I cling to the fact that my God is both the Great Healer/Physician but also a God who provides.

1 comment:

Natalie Green said...

Kristi. I am so amazed about how you are handling everything. You are a great daughter of God and we are praying for you and Kaleb in NC through your journey with CF.