Fri. 9/19 - update

We had an eventful day. Caed didn't wake up again. I called our IRP coordinator (Brandi) around 11:00, and she wanted us to get down to the lab and draw some blood. About an hour later, Caed began coming out of it. We went for the lab draw, and sure enough it showed his CO2 level low. Brandi was going to talk further with Dr. Mercer, but felt it could be a number of things: he could just have some kind of "intestinal bug", or we were advancing too fast with his treatment (rehab with his formula). They wanted me to stop all feeds for a few hours and give his gut a break. Then, I started his pump back at 45 cc (it was 82 when all this happened). I increased it by 5 every hour. Now, he is fixing to go to bed and it will be at 75. They want him to stay there through the weekend. They also increased his Sodium Bicarb intake to 30cc. / 3x daily. (the purpose of this is replacement therapy.....because of all his stools each day, he is losing most of what is in his body naturally). I also had to take a stool sample down to Diagnostics after the lab draw. Brandi said the scope Tues. did reveal bacterial overgrowth in his intestines (which we knew anyway), but wasn't sure the details on it yet. She did comment that it was less that what she had expected, so that's good. He will need to get started on bacterial overgrowth therapy (antibiotics) for a very long time. (she said with some kids it's years and years...even life). I'm sure we will find out a lot more at next week's clinic appt.

Caed's dressing change actually turned out pretty good today! Thank you for praying specifically for that. I asked the nurse again about the adhesive removers, and she found some in her bag. It only took about 10 minutes (compared to 30 last week!).

After his nurse left, Caed wanted to go back to the park. We stayed there several hours. It was very busy and there were lots of kids for him to play with. He even made a comment at one point and said, "This is the best day ever!" ha! I have really begun noticing how Caed reacts to the other kids. Most of the time he begins the conversation with "You have to be easy with me because I'm sick....." The kids just look at him, and of course most reply, "No you're not!" It was funny yesterday as I listened to him TRY to sum up the last 7 months and all he has been through to 2 little girls. You should have seen the look on their faces! I know these other little children don't have a clue what he's talking about, but it's definitely good for him to be able to verbalize it. I have also noticed though how he just gets in there and plays. From my viewpoint and I'm sure all the other parents 'Caed is different.' He looks normal, but has a big backpack strapped to him and a tube hanging out the side. I love the innocence of children. Caed does not walk around shy or embarrassed b/c he's different. I don't think he even sees it. Thank you God for that!

We went to eat supper and then walked around the mall until it closed. Our plan is to go to the zoo tomorrow. It's a free day.....no appts, no labs, no nurses. Hopefully though he will have a good night and wake up in the morning.

Also a praise today! Got some stuff finalized (finally) with our social worker. (it's been a mess!)



Eating breakfast at 11:45!
(cereal....easy on the milk)



Here is a glimpse of some of Caed's daily supplies:


the nightstand is officially FULL!
(as well as my parents' pantry back in Idalou)


Here is our "formula mixing" station



pumps and bags