Update on Josie

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My Granddaughters progress,

Thank you all

Wednesday, December 19, 2007

What’s to come!!!

Josie has been doing really well at home. I've been weaning her drugs & she is handling it fine, no withdrawals, thank God. She had her first doctors appointment last week with her primary pediatrician. It went really well, she didn't fuss, she's gained weight since being discharged & threw up on the doctor after she stuck the wooden stick in her mouth! LOL Her next appointment was to be with Surgery follow up last week but I canceled it b/c of the bad weather we had here. They gave me a resheduled date of January 8th! I was ok with that until recently. Josie has been throwing up less throughout the night & day but when she does throw up, the nasal feeding tube comes up with it. That means we have to put it back in through her nose & check placement (in the stomach) everytime. Its not pleasent at all. She hates it, we hate doing it but it has to get done. Its physically & emotionally exhausting on all of us. There is not a single time that or I do it & don't break down crying afterwards. She's getting stronger & more forceful. She'll throw her head back, scream like you wouldn't believe and lock her body like a board! Not to mention the other day, on the 3rd attempt to get it back in, I made her turn blue. I knew that wasn't good so I removed it immediatly. That was a sign that it went into the lung & not the stomach. That was it, I had it! She fell asleep right away & I put her to bed without the tube in & waited until got home from work to do. I was so shaken up, it was horrible. I told the home nurse about it & one of the neonatologists called yesterday to ask my permission to use Josie's picture in a presentation they do every month on babies on ECMO. They wanted to do it on Josie since she has been such a miracle & beat all the odds. Of course I gave my ok & then told the doctor what was going on with the tube. She said it was expected to happen. See, originally, when Josie left the hospital we knew that eventually she would need to have another surgery to put a GT (stomach tube) in & repair her hiatal hernia which is causing the acid reflux & vomiting. What we didn't know was when. The surgery team wanted to wait & see if the vomiting increased they would do it sooner but the longer the better. They want to wait for her diaphram to heal from the 1st surgery & her abdomine to heal also from the 2nd surgery. Well, now that she is throwing up the tube more often something needs to be done now!

I called the surgery clinic & asked to get Josie in sooner than Jan. 8th but with the holidays the surgeon isn't going to be in the office. So, I begged the nurse practioner to get the word to Dr. Sharp, he's amazed by Josie's recovery and I knew that if he heard she needed to be seen he would make an exception. Well, I was right. Josie's name got to him so he spoke to the surgeon that was to see her & asked if he could take over her follow up! I got a call today saying that he wants to see her tomorrow!!! I'm so happy, I just knew he would come through! I saw the look in his eye the day before Josie was to go home, he didn't say anything but look at her, face, not her incision or belly...he just wanted to look at her face! Then before leaving her bedside he put his hand on my shoulder & said she's a miracle & walked off! So I knew that he would be the one to come through for Josie!

So tomorrow she has to see the surgeon. We will discuss the procedure & what will happen. I'm pretty sure he wants to repair the hiatal hernia & put the GT tube in at the same time. What does this mean for Josie??? Well, to my understanding, putting in the GT tube is a 10 min. procedure. The surgery for the hernia repair, will be a couple of days. Josie will need to be hospitalized again. Its not fair but with everything we're going through now with this damn tube, I pray that its worth it! I don't know when or what time frame we're looking at for sure. I'll know more tomorrow.

Josie also has an appointment after that with the special care clinic who will go over what surgery's plan is & talk more about nutrion, developmental stuff, ect. So we'll have a very busy day out!!! We also are expected to visit all the nurses & doctors in the NICU! They love & miss her so much already! Josie has touched all of them there. Its wonderful!

Oh...the home nurse came today & to make things a little more urgent, Josie has lost 3 oz. Now that doesn't seem like a lot but 3 oz. in one week is quite a bit to lose. The home nurse even called surgery & the pediatrician to let them know that this needs to be done asap. The vomiting & removing & replacing this feeding tube as much as we are having to,can cause more damage to Jo's esophagus & sinus'.

It sucks! I wish I could take it all away from her! I would have a long long time ago! More updates to come after our appointment tomorrow! Thanks to everyone that wants to help us out & has helped out this holiday!!!! All of you will hold a special place in our hearts forever!

I will pay it forward one day! ~Tara

Love and Light AnnetteSee AOL's top rated recipes and easy ways to stay in shape for winter.