Wednesday, May 28, 2008

Frustrations abound

No echocardiogram today. I walked down with Elaina for her echo this afternoon. The plan was to give her a sedated echo. This way her heart wouldn't be working so fast as she wiggled and squirmed away from the cold ultrasound gel. Once we got there, a big debate ensued about the proper way to sedate her since she was not "drug naive". Since there was no counter agent for most of the sedating medications and they were worried about her being naughty and deciding not to breathe, it was decided to give her versed. They started to prep her; blood pressure, temp, etc. and she had a temperature, 39.0 celcius (borderline 104f). No sedation with a fever, so we went back to our room.

Small detour. One we got back upstairs to the room, our nurse was confused about her temp, so she took it again. The first time was in her ear. Michelle (the nurse) didn't think that was very accurate in a small baby. The 2nd time was under her arm, this is how they've been taking it since we were admitted. It was 36.5 celcius. That's a titch below normal. Very confusing, so it's discussed by all the nurses and a doctor or two, and they finally decided to take a rectal reading. It's 38.0c, about 101f. Since rectal is the most accurate, they decided to go with that, so it's officially a fever. The doctor wrote orders that from now on all temps are to be taken rectally. Who knew that taking a temperature could be so involved!

They have scheduled a new echo for tomorrow, maybe sedated, maybe not. It will all depend on her temperature. There is a slight chance that if they do decide on a sedated echo that it will be done in the PICU in case she has problems with the sedation. I'm hoping that they will just do it without sedation. On a side note, Dr Pulver said that he doesn't think that going to the cath lab would benefit her at this point and thinks it will be fine to just have it done before surgery in July. Surgery is tentatively scheduled for some time in August. He thinks that the cath can be done on an outpatient visit, and she can probably go home the same day. Hooray for that! Her only other cardiac cath took place in the NICU when she was only 6 days old and was only 4lbs 9 oz., so I really didn't know what to expect.

OH! So get this, they are cleaning her ears out tonight because there is a lot of wax and they think that this fever just might be an indicator of, are you ready??, an ear infection. At this point, I would like to ask you to please refer to my post on Friday May 16th "Going to the Doctor". Did I or did I not say that I thought she might have an ear infection??????? Hmmmmm. Do they ever listen to Mom?? I think I will pull out my hair in frustration if this is what has been the underlying issue the entire time. We have been there for 12.5 days. Now they are wondering if she might have an ear infection. I'm so exhausted from all the driving, being away from Ben, not to mention the expense of gas for my 120 mile round trip every day!! My stress level is through the roof! If all of this nonsense could have been avoided with a simple prescription of Amoxicillin, I will just .........grrrrr. Okay, so maybe I'll just give a sigh of relief. After all, she is immune compromised (DiGeorge Syndrome) and has a severe heart defect. I would rather have them over react than under react (like last week with the Resident that shall not be named). Besides, being admitted did give me the opportunity to discuss and evaluate alternate feeding methods. Oh, she didn't throw up today! Yippee! One day down and a million (I hope) more to go. Fingers are crossed and prayers are being offered that she might make it home before the weekend is out.


Vanessa said...

Wow...what a day you've had. Poor Elaina for having to get so involved with the tempature. It's jsut not nice to do that to such a sweet baby.

I'm praying that her temp goes down and the echo can be done without sedation. Hey...we had a CT done with out sedation and they thought it couldn't be done. She was about Elaina's age at the time. I just got her really hungry and tired, gave her a bottle, and she went right to sleep. Maybe you can work something out, but I know you are on a strict feeding schedule so I'm not sure how that would work.

I hope you have a better day and I'm so glad they finally caught the ear infection. How frustarting!!!

Sending some prayers your way!

Vanessa said...

Good morning friend! Just up and thinking about you guys and wanted let you know I have you in my prayers. Hope today goes well and get the echo done.


Kathy said...

You know...we have to always check Isaac's temp in the hospitals rectally...he just doesn't give a good reading any other place (so, remember to always tell them that).

Glad she didn't throw up today...that's a GOOD day!

Hope it's just an ear infection...and you get to take your baby home soon!