Wednesday, May 19, 2010

Good girl

Reagan was still awake again last night when I put her to bed (around midnight) but I checked back a little later and she had already fallen asleep. I just assumed she slept the whole night through but this morning she slept in til 10am and took a couple cat naps today (very unlike her) so maybe it wasn't as good of a night's sleep as I thought. She woke up gaggy and has been gaggy all day but thankfully never threw up. Her mood has really been great despite the nausea...she's such a good girl. This morning her teacher came by because Reagan was still sleeping yesterday when she was supposed to come by. Reagan was very happy and alert today...although not as happy and loud as her teacher (I think she may have had way too many cups of coffee)!! We did have a little stress today (as can be seen now by the cold sore on my lip). Yesterday I checked Reagan's gj-balloon and it was half empty again! So first thing this morning I called both GI and Surgery to try to get something set up to replace her gj-button. Neither called me back. So around noon I called both departments again and finally spoke to Reagan's surgeon's secretary. She had written the orders but the doctor was in surgery all morning and hadn't signed them. She called interventional radiology and asked them when they could fit Reagan in and they said they didn't have the right size tube and it would be a week or so before they could get it! They wanted to get her in on Monday for a temporary tube and then we'd have to do it all over again when the right tube came in! I was furious! First of all, what if Reagan had pulled it out?!?!? Then what? She just wouldn't be able to eat? Why on earth can't a major Children's hospital get this tube more quickly...it just didn't make sense. Anyway long story short, after I made a big stink about it they managed to track down a tube and they'll replace it on Friday. I also spoke to our home health agency and they are going to order two to keep on hand as back-ups. On a good note...finally Reagan pooped today! Not on her own accord or with the help of fruit-eze, but with the help of Fletcher's Laxative (with senna). One of her GI docs had recommended it to me in the past because although Miralax helped with the consistency of the bowel movements, it never helped with the frequency. Since discontinuing the Miralax on Saturday and adding the fruit-eze, today was 5 days without any "movements". So I went out and bought the rootbeer flavored concoction and literally 30min later we had our first of two big dirty diapers (and I might add a much better consistency than the liquidy miralax poops). Sorry to be so graphic, but you parents dealing with the same issues know how difficult this can be. I would highly recommend Fletcher's and only wish we had tried it sooner. **Trying out a new blog background...let me know what you think! The orange is a little bright, I may change it again!**


3 comments:

Jennifer said...

I love the new blog design!! It was nice talking to you today. The pics of Reagan and you and Mike turned out great!!

muriel said...

Tera,
Are you taking Reagan to TCH? We are still here! West Tower, tenth floor, come by and visit if you have a chance.
Muriel

blogzilly said...

The slowness of hospitals, doctors and a lot of other folks in the medical field sometimes astonishes me.

Liking the new layout and photo.