The Right Now's

I have had the chance to speak with the patient coordinator from NJ (National Jewish) She let me know that Jonah will be scheduled to stay for a minimum of two weeks. More or less depending on the findings. They have most of his medical records in hand and are now primarily waiting on Insurance. While I have received four phone calls from NJ, I've received none from Malina Health Care. The Rep told me to just keep on them and call every other day. As my brain has more and more time to absorb what is going on I am starting to have anxiety. I hate not knowing what the out come is going to be. My brain is exploding with questions that no one can answer. Will all of this soon just be a memory? Will Jonah be "normal" again? Will he be okay off of steroids now that his body is dependent on them? I don't know, I don't know, I don't know. My biggest fear is that we will walk away with no new information. I need a real and true diagnosis.

Yes. Jonah's doctor has diagnosed him with having CLD (Chronic Lung Disease) but I have spent many hours on the computer and in the research library at PCMC and am amazed that not one case of CLD has come from RSV or developed from ventilators on previously healthy lungs. I have found many cases of CLD in premature babies, COPD patients and in overall
unhealthy children but not in any full term healthy babies. I did, at Jonah's last appointment bring this up to the doctor and she agreed, Jonah is complicated... thus another reason for a second opinion.

Jonah has been off oxygen in the day time (except napping) for five days. This is great progress. He is still chronicly wheezing but his stats are staying stable. The doctor said to ease up on the medication that controls the wheezing (it's another inhaled steroid, She doesn't want him to become reliant on that too) It is hard to hear him breathing like this. I try to ignore it but how do you hold your baby and pretend it's okay?

I often wonder what lesson is to be learned and who is being taught. What I have realized is that I need to depend more on the Lord and keep the holy spirit close to my heart. I need not dwell on the questions, the what if's or the future. I need to stay focused on the right nows. And right now I have to go get ready for church.