Monday, September 08, 2008

No No's?

So, Elaina is good at pulling out her NJ tube. So good in fact, that the team has decided to go to drastic measures to prevent it from continuing to happen. Elaina is now the "proud" owner of her very first set of No No's.

She doesn't fight them too hard, but the instant that they are off her, she grabs and tries to pull all the tubes out of her face! The nurses struggled this morning to even get her weight, because she was so grabby! She's such a cute little stinker!!!
Anyway, she continues to have a fever and as usual nothing cultures. The Infectious Disease doctors are going to do one last blood draw, and then we're going to assume that the fevers are due to medications and/or how wet or dry she is from her diuretics. They will only culture her in the future if there are other indicators, besides fever, that she has an infection.
Speaking of diuretics, she's super dry again. I tried to tell them on Friday and Saturday that she was getting too dry, but it seems that no one listened to me. Today they started giving her more "free" water (an extra 20 cc's per hour) to see if they can get her to balance back out. Her sodium was increased and some of her other electrolytes were also out of balance, an indicator that she's dehydrated.
Tiffany, our favorite music therapist, came today and sang lots of beautiful songs. So soothing in fact, that Elaina and I both fell asleep in the rocker. Tiffany asked my permission today to write a special lullaby for Elaina. I, of course, agreed. I can't wait to hear it. Hopefully she'll give me a copy of the lyrics so that I can post it.
Anyway, that's about it. We had a super nice weekend. Saturday morning we attended a Gold Medal Mile Fun Run/Walk for CHD awareness that was put on by Intermountain Healing Hearts. It was amazingly fun and well attended. Ben got a heart snake painted on his face. Isn't it cute??? He had such a fun time with all the other heart families!

I was able to spend Saturday night at the hospital and then went to my cousin Valerie's birthday party on Sunday. It was lots of fun and was the perfect end to a great weekend. Monday started the week all over again with work, getting Ben to school and the daily commute to the hospital. Now I'm home for the night, have a little bit of homework to help Ben with, then it's off to bed and start all over again tomorrow!

I am so grateful for all the blessings in my life! I love my children!! I love my family and all the friends (local, online, etc.) that have been so supportive of me during this long journey. It's not over yet, and just knowing that I have people that care and are praying helps to give me the courage to continue on this difficult path!



Gourley Fam said...

I fell in love with your Ben on Saturday. I was getting ready to hand out the bells to our angel Moms, and he came running up and wanted to help! He is a doll! The NO-No's are funny! What a tricky girl! Love the spunk!

Colin's Blog said...

It's good to hear that Elaina is feeling well enough to fight back a little. I always though that was a good sign with Colin. Again-Colin still has mysterious fever and after 5 mos we have all come to the decision that it's either diuretics or meds. We tinker all the time with free fluid and how much to give-it's such a mystery. Colin has pulmonary hypertension too so, it was also suggested it may have something to do with the lung arteries. We'll probably never know!!

Melanie & Colin

The Portas said...

Those mysterious fevers just won't go away, will they? It's such a good sign that the cultures are all looking good. I guess Elaina just must like fevers! She likes to be warm!

Sounds like you guys had a nice weekend. You sure do a lot, between caring for your little Elaina in the hospital and caring for Ben at home. I hope you have lots of help! Wish I was closer to help you out.

Take care. Praying for a good day for all of you....xoxoxo

Mommaof2 said...

Glad Elaina is doing well, & that you The "no-no's" are soo adorable on her. I wanted a pair when Vaeh had her NJ, but we were at home & the occupational therapist was a ding-bat & said that "babies sleep with their arms tucked in..." Guess she never saw Vaeh sleeping!

Praying that things continue to go well!

Mami Adame said...

Was wondering...if NJ tube bugs her so much, and it maybe long term, not permanent, but used for awhile...have you considered a GJ tube? I know it seems so invasive, but you know it can't be comfortable to have that tube down her nose! I only mention it because Angelina's reflux w/nasal regurgitation was so bad at the same age, that she too needed an NJ. She also liked to pull it out. Initially I fought getting a gtube, but in the end, for her situation, I do believe it was best thing to do. They did her gj tube @bedside with concsious sedation. I don't know, maybe this is too invasive for Elaina especially with her fevers? Just some thoughts!
Take care,