Saturday, June 24, 2006

You do the short gut Hokey Pokey and you turn yourself around....

Good news and bad news today (what else is news?)

First off, the results of the bloodwork came back today and cleared Eleanor of a central IV infection, which is good. Line infections are Scary with a capital S and you don't wnat to know the statistics on what happens if she gets one that gets a foothold. So she is off the heavy antibiotics and went back onto food onThursday night. 1 ml every hour. drip. drip. drip.

That progressed well through Friday and we even gave her some food by bottle which she thought was just great.

'You mean sometimes when I suck on the binkie, food comes out?'

Cool.

Friday afternnon, things were going so well that we increased her food to 2 ml/hour and she did just fine on this until mid evening when Gassy Girl decided to spit up a little of the milk that had gone in through her G-tube. I thought that it was no big deal. I assumed that I had missed a burping and she showed me that she was still Gassy Girl, the child of Gassy Guy and Evervescent Abby. Bubble bubble, squawk, wheeeeze, wheeeeze. Then a quiet that makes me really nervous as she clears the liquid from her throat. Then a really loud set of wheezes.

IT is still scary even though I can predict the sound effects.

It is now 4 AM and. after a quick wardrobe change, Ellie is back to sleep and back to the land of no food. At 3:30 she decided to barf for distance with a little bit of milk and a whole lot of gas which made a dramatic entrance all over her fancy PJ's that she is finally long enough to wear.


I can still go upright from a deep sleep in two seconds.

So we are in a holding pattern until morning when the doctors, and more importantly Abby, arrive to assess the situation.

I am still not upset or discouraged. Amazingly I was having a dream about meeting a discouraged parent when Ellie woke me up tonight.

Doctor Freud. Paging Doctor Freud.......

Strange.

3 comments:

beth brogan said...

When Ellie and I spent the afternoon together the other day, we had a long discussion about decorating her room. I thought she understood that we she was supposed to wait for me to paint the mural, but I guess she was in a hurry. I have to say, even after a bout of puke, she's got style. You too, Gibby.

Martha Brogan said...

Grampa and I had a terrific visit with Ellie yesterday. With all my child development courses, I was still amazed by the girl. I held her and tried and tried to wake her to feed her, with no luck. Abby walked in and called Ellie's name. She was instantly awake, all smiles watching her mother.
Sorry that you had a rough time in the night- she looks so big in her new pajamas.

Tunny said...

Cor' what a lot happens in a few days - I remember that so well when Naomi was in hospital. The times that Naomi used to vomit I had 3 theories which may or may not have been the real cause but I'll share tham anyway in case the pattern fits for Ellie. Initially with Naomi when her bowel was very dilated she would vomit if her milk went over 3mls per hour - that was sorted by her surgery so hopefully having seen Ellies surgery photos you've ticked that box already! The next thing that I blamed for vomits was the liquid version of loperimide - every time she was on it the vomiting increased and seems to coincide with the dose time - eventually they switched to disolving tablets in sterile water and we had no more sickies straight afer drug time. The third thing was somehow related to either bacterial overgrowth or the antibiotics used to treat it. Without an ileocecal valve the bacteria can get from large to small intestine more easily and can cause lots of gas (and I think that causes vomits). naomi used to have a cycle of 2 weeks on Metronidazole and 2 weeks on Trimetheprim to combat baterial inthe gut. As she approached the time to change we sometimes got more vomits and when we switched they stopped - I don't know whether she had a bacteria which was only killed by one of the antibiotics so it would grow for the 2 weeks on the other one and them be killed off again, or whether it was a yeast overgrowth caused by the antibiotics or just a side effect of the antibiotic itself but those vomits continued until Naomi was off TPN and we stopped the antibiotics.
The other thing I sometimes noticed with Naomi is a strage smell on Naomis breath and head like freshly cut damp grass - this was often the first sign of an infection in the blood and as you said they are pretty scary at the time but don't worry too much about statistice because Naomi had LOADS of infections in her blood and line and is still here to tell the tale (except fortunately she remembers nothing about them!!)

Hope Ellie's back to her usual self soon,

Tunny and Naomi