As of today Daniel and I have been in Palo Alto for one month. I haven’t been home for 6 weeks; this is by far the longest vacation I’ve been on (and I can’t say it’s been a fun one, adventurous, but not fun).
Jane had a pretty decent night. She dropped her sats a couple of times but with re-positioning of her tube she was fine. She is so sensitive!! So far this morning she has been doing well. We have started her on a daily dose of Ativan to take the edge off and she has responded well. She is no longer on diuretics and is still peeing well. Her lungs continue to need time to recover but are making slight improvements. Her liver and kidney numbers have become elevated over the last 2 days. We think it is due to starting her on TPN but that is one of those things that we have to find the right balance between. She needs nutrition because she is malnourished and can’t tolerate food, but when we give her TPN it is rough on her liver. So…. do we let the liver suffer a little while we get her stronger?? These are the things the docs have to figure out and weigh the risks and benefits. The next issue on the table is her high blood pressure. Her tiny, cute body won’t be able to tolerate a high blood pressure for long so she will have to get that treated soon. A high blood pressure causes the heart to become enlarged over time and takes a toll on the body.
We have come to realize that every organ in Jane’s body, with the exception of the appendix, has been affected. (we should probably just remove it before it becomes a problem, haha) This is to be expected given that the heart is the primary muscle that controls the body and has an effect on all the body systems. Isn’t God amazing….how this coincides with scripture so perfectly!! I can’t handle how perfect God has created life. He is remarkable! It boggles me to know that their are unbelievers walking this earth. Our bodies are so perfectly and intricately put together with our physical (and spiritual) heart at the center of it all…wow, wow, wow!!! In order for us to have life everything in the body has to be working perfectly and in unison: the heart pumps blood to the body, the blood carries all of the nutrients to feed the body and carries all of the toxins to the organs that excrete the toxins, the blood supplies oxygen to the lungs, and in the background the brain is telling every organ and muscle how to respond and I can go on and on—its perfectly amazing! The team continues to be amazed at how Jane is doing. One of the NP’s told me that Jane is remarkable given everything that she has gone through. I think so, too 🙂