Wednesday, October 15, 2008

Back on oxygen

Long...long....long day at the hospital today. Jaxon has been put back on oxygen and threw up 3 times this morning. We think the vomitting was due to the sodium they are now putting in his formula. Typically babies throw up from this until they get used to it, but I'm told it's necessary. He didn't throw up anymore today, so we'll see how he does from here. The oxygen (which horrified me to walk in on) was put back on from the respitory team because of the overnight study they did on him. They are saying that he's working too hard to breath and it's burning calories and contributing to his feeding/vomitting problem. They are performing another study tonight with him on it. I'm told he'll most likely be coming home on oxygen (knife in my heart). When I walked in his room today I saw him on oxygen and was told he was throwing up again...that was it....no explanations. Wow...I finally had that breakdown. Through many hours of speaking to rounds of people, I finally got my explanations.
I've called for a meeting between all the different specialists to have a discussion for a care plan. I'm so overwhelmed with all the different hands in his care, that I really need everyone at one table. I heard they were considering another diuretic for him and I threw my hands up and am demanding this meeting. I'd love for him to not be on a diuretic, oxygen or the new drug Reglan...why oh why can't that just be??? More importantly...why was he released to us in this condition???
I've shed too many tears, and threatened more people than I care to admit today. I'm going to bed and going to pray tomorrow is happier for us.

13 comments:

nora said...

i am so so sorry you are having to deal with this. i truly hope the care conference brings some answers, and i pray that little jaxon will get past this soon and come home healthy.

Erin Tukua said...

I am so sorry Annie. Big hugs and a ton of prayers daily for Jax.

kimmiebr80 said...

I'm so sorry you're going through all of this! Big hugs to you and your entire family!! I'm hoping the big meeting helps bring everyone on the same page, and hopefully really soon Jax will be home healthy and gaining!
(Kimmie1538)

Mary said...

Oh hun, I'm so sorry you have to go through this. My heart is aching for you.

Kristin ("pmkmp" from the nest) said...

I'm saying lots of prayers for poor lil' Jax. I hope he turns the corner soon and this all becomes a distant memory. You are a very strong woman Annie!

Amanda said...

Oh my goodness! I feel horrible for you. It seems like there are too mnay people making decisions for Jax and with constant changes it is hard to see what is working. I am glad that you stepped up and called the meeting. I hope it goes well and sweet Jax is home and healthy sooon!! (als1124)

Anonymous said...

I ran across your blog through a friends and I have been keeping up with you and your little precious boys. I am so sorry you are having to go through this, my heart hurts for you and you are in my prayers and I have also put you and your family on my prayer list at my church. What hosp. is he in? Just curious...I had a friend that had a baby at Children's and they went through the same thing, and finally got some answers, but they were so frustrated for awile. I pray he gets stronger and better each minute, so he can come home. Please know that so many people are thinking about your family. Thanks for all the sweet updates.
Laura/laurasiever@hotmail.com

SSU said...

I agree with Amanda. You did the best thing by calling a meeting. With so many doctors working on him, it is hard to know who is doing the right thing. And don't feel bad for the breakdown you had. I was a wreck when my daughter got put back on oxygen for the second time - because like you I didn't understand why they did it.

monica said...

My thoughts are with you today in the meeting. Good luck getting the answers you need and keeping strong.

SaraBelle said...

I am so sorry that you continue to deal with this! Please know I am keeping you, little Jax and your family in my thoughts and prayers. I hope you find some answers soon.
Sara (nestie beefsbride)

jzce said...

Poor little guy! Don't be discouraged. They will often release babies home because SO many times the babies fair better with their families - I'm sure they didn't mean any harm to your little precious boy. Good luck with your meeting!

R. LePoidevin said...

Annie and Jason,
I have been so out of the loop! I am so sad to hear about Jax yet as of yesterday he seems better! The pictures are adorable, they are so very precious. I read what that anonymous woman wrote- it was awful and do not give another second of thought. I wish there was something I could do - all of you will be in my prayers. Ruth

Ron and Aimee said...

Oh, god, Annie. You have been through too much with Jax, Brady and your husband. I really hope things look up soon! Sending prayers your way....