Rough Morning

I slept much better last night.  I think I got about six hours total in short little 2 hour nap increments.  I feel great compared to yesterday!  I don’t know if it’s possible to sleep any better than that in this place.  My hip is killing me though, the bed is a pull out chair, so basically a single.  And I’m sharing it with my two year old, so not a whole lot of wiggle room and I must have not been in a good position last night.

This morning, though, has been the worst so far of our stay.  I have a new nurse who hasn’t read her file yet and doesn’t know anything about her situation or history.  Haven’t had time to sit down with her and talk that out yet.  Her poke didn’t go well this morning, the lab lady came up with no hand warmer, so we had to wait for one from the nurse’s station and it didn’t get put on long enough so it took longer and she was getting pretty distressed about it.

After that it was time for breakfast.  I am so glad we are able to increase her calories today.  Nothing makes you feel like a horrible mom more than eating meals in front of your very hungry child.  At every meal she screams because it’s all gone.  Heartbreaking.  So I was glad for a bigger meal this morning, but her digestive system was not.  This is the first time I have ever seen her cry.  (It takes a lot!)  She just sobbed for fifteen minutes; I was so concerned that I asked for the doctor to come take a look.

The doctor ordered a suppository, thinking that might help move things along and ease her discomfort.  After that the nurse came in and said a routine urinalysis was ordered.  I had no idea what all involved the “bag”, but I felt like she had a rough morning and I didn’t want any more interventions than necessary.  She assured me it was quick and painless, so I went ahead.

Putting the bag on was not bad at all, but once we got the sample and she came to remove it she said “Now this is the hard part.”  I felt like punching something… not someone of course… ahem.  More crying.  It took like five minutes to get the adhesive off of her.  I was infuriated.  I never would have agreed to a non-necessary urinalysis had I known what was involved with it, and I told the nurse as much.  This girl has been through so much, the last  thing she needs is unnecessary trauma.

After I had her diaper back on and calmed her down the nurse offered to do the suppository.  Umm… no go away.  I think I said it nicer than that.  But anyway, I’m holding off on the suppository for now.  Her diaper change is the only thing she was not scared of here, and that’s just been taken away.  I mean, it doesn’t seem like a big deal.  But that seriously is a big deal.

I was thankful that they had a volunteer come up to take Stephen to the play room.  Normally I would never let a stranger watch my child, but Hope needed me and he needed out of that room.  There was about a half hour they were both just crying and it was not a good situation for anyone.  He loves the play room, and had been begging to go, so I think it’s the best I could have made out of a bad situation.  I wanted to go down and be with him now, but Hope is sleeping and I feel like it’s more important to stay with her.

The doctors ordered and EEG again for today (I had declined it the first day).  The EEG technician came up and I talked to her about Hope’s situation, since we asked for a portable EEG due to her trauma of being moved away from her bed at this point.  I thank God for that dear woman.  She asked my why they ordered an EEG and after explaining to her everything I had been told she was totally confused at why they had ordered one in the first place.

The doctors before had assured me it was non-invasive, but after explaining Hope’s situation to her, she was straightforward with me that this would definitely be an invasive procedure with her very sensitive state.  I thanked her and asked to wait on the EEG until the doctors did their rounds.  When I spoke to our senior doctor about it, it became evident that there was some misinformation about her medical history that they were going off of, so I was able to clear that up.  And they decided to have neurology come take a look at her and wait on the EEG since (as I had presumed already) there isn’t a specific reason in her medical history for her to have an EEG at this point.

That was a big victory for me this morning.  And little victory, they cancelled her second lab today, so we only have to do pokes once a day now!  Woohoo!  Hope is asleep now, and I’m praying the rest of the day goes a little smoother for her.  I think we’ll have some visitors later, so that will be a much welcomed break for me as well!

Comments

  1. At UC Davis Children’s Hospital, they actually take the kids to a special room to do pokes and stuff like that so that their bed is a safe place where they aren’t going to have needles poked into them. This didn’t quite work the first time Daniel was there (our epic 3 week hospital stay) because they had to teach me how to do his Lovenox shots but I like the concept. After they do whatever they need to do, the kid gets to pick something from the treasure chest.

    Make good use of the volunteers. They’re there because they want to help and if it means that you can get a shower or attend to your sick kid, they’re worth it.

  2. Sue - WI says:

    I’ve been following all your posts and praying for you. Thank you for keeping us updated. Hope to see a picture soon if time allows and you think it’s ok. Bless you!

Leave a Reply

%d bloggers like this: