Into the Twilight Zone

Time for an update....

We received Ryan's lung biopsy results. Ryan has been officially diagnosed with Bronchiolitus Obliterans - a big word for a chronic lung disease that he has likely had his entire life post transplant. This condition is both irreversible and progressive. The treatment, to hopefully stop the progression, is a combination of steroids, immunosuppressants, and antibiotics. I feel like we have gone back in time. The difference here though is that Ryan is older and he knows what is going on and it is MUCH harder now.

I remember when Ryan got RSV. That diagnosis and 11-day hospital stay just about sent me over the edge. That particular hospital stay made me realize that we had been carried by a higher power during our journey in Los Angeles.

Now, 12 years later we are faced with more medical bills, more medications, the risk of contracting illnesses, weekly blood draws, and monthly tests. I have not learned my lesson well enough. I thought I had, but I realize that I was filled with much pride and I commit to be better.

I spent the day today cleaning and catching up on laundry. I didn't even come close to getting everything done. I stress that he might contract something that will put him at risk, yet I want him to live. He already knows he is different. He has been given several restrictions and it is killing him. It's a strange feeling knowing that what you are asking your child to ingest every day is the very poison that is killing what you fought so hard for. It's a strange balancing act.

Our prayers have been for Ryan's doctors. We've prayed that they will be guided in his treatment. My only challenge now is to have the faith that our prayers are heard and that the treatment he is receiving is the exact treatment that he needs to prolong his lungs.

The doctor told me to take all of the negative google searches I have read and wipe them out of my brain because Ryan will be healed. I can only cloud them over. I am a realist, and it is my safety mechanism to look at all scenarios, both good and bad.

When Ryan was on high doses of steroids as a baby, we called him 'Tiny' because he wasn't. His cheeks are starting to puff a bit and tonight he asked me to start calling him 'Tiny' again.

So, into the twilight zone we go my little 'tiny goose'.