The last few days all feel the same. That is why I titled it groundhog day (like the movie). No real changes he has been holding steady. Sats in the high 70s to low 80s. I don't think this is going to be good enough to go home with. Some readers might be wondering what is going on and why are they not doing anything? They are doing things even as it might look like they aren't. Owen is very complicated and 1 of the doctors said that he was having dreams about him because he was thinking about him so much. They are not wanting to do anything to this little body unless they have to. The question is, is Owen turning blue from his Ebsteins or is he turning blue from the pulmonary veins that are not draining the right way. We were told if they do the open heart they will only fix 1 problem but they are unsure what to fix at this time. They have a meeting next Tuesday with the cath team and all of the cardiologists to make the plan. I think Owen will more than likely need the cath to find out what his anatomy is really like.
Chelsea and I were next on the waiting list for a room at the Ronald McDonald house here in SF. These rooms are free and close to the hospital with FREE parking. They are private rooms most with private bath. You share a kitchen and common area with other parents who have kids at the children's hospital. So we are leaving Casa de Rich tomorrow but might be back if Ronald's house does not work out. We get a lot of people asking how Chelsea and I are doing. We are doing good. As best as we can under the circumstances. We both think that this is the longest that we have been around each other for this length of time. We are normally very independant and with different schedules. We are doing surprising well. We both have our moments but the other is there to pick you up. As we have for years, we continue to balance each other well. We miss home a lot an can't wait to be back, back to what is normal. What is normal anymore? And what would normal be like with a new baby anyway? We have only been doing this for 21 days and others have been doing it much longer so we always keep that in mind. We know that someone always has it worse and our situation could be a lot worse than what is for us and Owen. Things are good and we look forward to this being a memory. We look forward to making our own "normal" with Owen at home someday. Owen had visitors today, he was able to meet Jamie and Kyle. They both had the chance to hold him and did well with the both of them. Sorry for the late blog. I was trying to type and also trying to help Rich diagnose the surround sound problem but that didnt work out so well.
-Chris
2 comments:
Hi Chris and Chelsea - I have actually read your entire blog the last couple of nights, and now I feel like I am caught up on everything! I just wanted to say that I am holding all of you in my thoughts these days as you struggle through all of this with your beloved newborn son.
Thinking of you with love, Heidi (Marcia's nearly life-long friend)
You guys are truly an inspiration. Thank you for sharing this with us.
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