Tuesday, June 03, 2008

Getting Nowhere Fast

We're still at the hospital, with no end in sight. Some days I just feel like I should move in! Elaina is still having the same struggles. She still has an increased oxygen need, but her chest x-rays are clear. She was up to a 3 liter flow today with a 65% oxygen blend. The Respiratory Therapists are still telling the doctors that she should be in the PICU on either a high flow nasal cannula or c-pap. They are deep suctioning her nose, but are getting less and less as the days progress. This is good, but she is still spiking fevers and none of the blood cultures are growing anything to tell us why. She is on her 3rd IV in her scalp as of today. They aren't able to get one in her anywhere else. They also tried again today to put a picc line in. This time they tried her leg behind her knee, but were once again unsuccessful. It's looking more and more like the only option left is going to be some kind of surgical arterial line. If this happens she will for sure end up in the PICU, because that is the only place the hospital allows patients to be cared for with this type of line. I talked with an infectious disease doctor today and she is concerned that Elaina might have a rare form of pneumonia. She ordered a blood test to check Elaina's t-cell count to see exactly how immune deficient she is with her DiGeorge at the moment. So we wait to see what the doctors will have to say on Wednesday. She was looking VERY puffy and swollen to me today, she weighs 11lbs 4oz, but it really seems like she gained it quickly, so I think it might be some water weight. Her doctor told me today that she was fluid positive, but the Cardiologist didn't want her to have more lasix. But she was looking worse as the day progressed and they finally ordered lasix anyway. Her nurse tonight told me that after I left she completely soaked through her diaper, so lasix was probably a good choice for today. She seems to have lost her grin, but is smiling with her eyes. She is so cuddly and full of love. She still enjoys getting kisses and seems to do her best when Mom is there holding her!

Ben and I went on a date tonight. After I picked him up from my Aunt's house I surprised him with movie tickets to Horton Hears a Who. This is one of his favorite bed time stories, and since it was playing at the $1 show, I decided that we needed a fun night out. He was very good in the movie and munched down a TON of popcorn. He's starting to understand a little more "grown up" humor, and seemed to laugh at all the right spots. Part of it may have been that I was laughing and he just wanted to join in, but it sure was a fun night out. I've been spending so much time at the hospital with Elaina that he really has been feeling neglected lately. It seems like I wake up , work at the computer for a few hours in the morning, and then get him to Kathryn's (my Aunt that watches him practically every day!) so that I can do my hour long drive to the hospital and spend time with Elaina. I stay until rush hour has calmed down and then make the hour drive home. Most nights I'm not getting back home with him in tow until bed time. After he's all tucked in I have to work for a little longer at the computer before I can get to bed. Then it starts all over again the next day. One of these days I'm going to have to squeeze some housework and laundry into the mix! I've also been spending the weekends at the hospital with Elaina, giving poor Ben even less Mom time. I would really like to spend more time with him during this stressful part of our lives. I was able to get some free Zoo passes from the Hospital for Friday night. There is a big event planned for families with disabled children or children in the hospital. There is going to be free dinner, face painting, and a couple animal shows. Fun, fun, fun! It should be a great way to spend some time with him before I have to spend some time without him!

6 comments:

Anderson Family said...

Ooh poor Elaina she has just the hardest time with sharing her blood. :(

Sounds like Ben had fun chillin with his momma. I'm glad the two of you had some time together you both need it.

We're coming up to PCMC on the 4th. I'm planning on stopping by your room to chat for a bit.

Hope things start to go better for you.

Hugs
Melynda

Mike & Rebecca said...

Stay strong- Elaina is such a tough little girl, hopefully the doctors will get a hold of whatever is making her spike fevers and you can go home and enjoy the kids as a family. It was nice that you were able to take Ben to the movies, its a hard balance all the time in a day, especially when one is in the hospital and the driving back and forth gets expensive.

Hugs,
Mike & family
IHH-VP

Kathy said...

Tell them to go ahead with an arterial line...it'll save her from all those pokes!
that just breaks my heart!
And...will you post the t-cells numbers when you get them...just because I'm struggling with Isaac's..it's good to see what other DiGeorger's are!
Take care...you're doing awesome mama!

Vaeh's Blog said...

I remember all to vividly the days of driving back & forth to the hospital. Leaving one child to go be with another... something parents shouldn't have to go through. Vaeh had so much trouble with her lungs in the beginning. They bronch'd her a couple of times & got out a whole lot more than regular suctioning could ever have. She is still on regular breathing treatments, but is finally starting to head on the up & up!

Like Kathy said, I hope they put in the art line to give her poor little veins & arteries a break! Even if it means she'll be back in the PICU, at least she won't have to be poked so often!

Hope things improve for you all! Always in our prayers!

Vanessa said...

I'm so sorry your having to deal with so much. You've received great advice already so I can't add much more. I'll be keeping you in my prayers.

By the way you've been "Tagged"...check out my blog! Gives you something else to think about for a few minutes. (If you even have a few minutes)

Anderson Family said...

We're sorry we missed you also. When we got to your room Elaina was getting a hospital bath. The nurse said she was making her all nice and clean for when you got there. :) She is still just as cute as ever! So I didnt stay very long, seeing how you were working and she was bathing.
I did make a comment to the nurse that her stats looked like pre Glenn stats. Atleast thats where Mariska was before the surgery had a date.
I'm glad to hear that Dr. Day is doing the heart Cath. He did Misky's cath back in March. We really liked him.
Atleast with the Glenn close is one thing off the list to have done soon. I take it they didnt find anything in the test? If they did I would be surprised that they are planning the surgery so soon. One thing I worried about before we knew when the Glenn would be is not having it planned and the having it be a huge shock that it would be that same day as a check up or they would have to do it the next day or something. I always have a hard time sleeping the night before any visit.
After the Glenn Mariska has had to much more energy, it made a world of difference. Just a thought for comfort, our card told us the success rate is 99% for the glenn. That blew us away when we heard that, How awesome is that?

Oh yeah I'm glad you like the goodie bag. I thought what if she doesnt like chocolate or something. Then I thought who doesnt like chocolate. hehehe

Sorry I rambled on. We're praying for her that everything smooth!

Hugs
Melynda and Mariska