Jordan Janeway: 5 Days and Counting

Wow, we have been here for 5 days with no set day to go home yet. I am starting to feel it and so is my family. It is wearing us down. This hospital room is getting smaller and smaller. Glad however to find out there is a gym here in the hospital. How many hours and days have we hung out here and I am just finding that out??? With all the stress etc. there are many times I would have loved to go run it off. Well, better late than never.

So Jordan is doing OK. Yesterday and today he has been retracting quite a bit. Basically his breathing is labored. Even with the vent on. They gave him some Albuterol inhaler through his trachea and it seemed to make him more wheezy. So this morning they switched it up and started him on steroids. I know, scary. However it is just a 3 day dosage and that usually does more good than harm. Its such a short dosage regimen that he shouldn't experience the side effects that normally come from taking steroids (yes many jokes come to mind but too tired to write them out:). They also fixed some settings on the vent to help his breathing. We have been giving Tylenol and Ibuprofen around the clock. So, with all this going on the doctor won't think about sending him home until he reaches more of his baseline normal. We were hoping today would run a little more smoothly so we could take him home tomorrow. We took him off the round the clock medicine and are now giving it to him as needed. He hasn't been spiking any more high fevers but you can tell he does not feel well and he gets sweaty and clammy feeling. He has also thrown his food up (or reflux, not sure which) twice today in large amounts and once yesterday. We don't know why he is starting to have trouble with his digestion. It is a common thing while being sick but why now when he is supposed to be getting better? He is sleeping quite a bit today and I hope his little body is getting the strength it needs.

Today I feel a little helpless. I have hardly held him due to the nurses worried about him refluxing again. I get it but I sure have a hard time just sitting and watching. With the likelihood of staying into the weekend, I think I am going to make a trip home to see the rest of the family. He is in good hands. I just got a text from my friend Stacey and she has a meal waiting on our doorstep. I am so thankful for all the wonderful people who don't seem to get tired of helping us. Feeling pretty blessed.

So here are the pictures of Jordan today. He looks better than he has: