Saturday, October 27, 2007

October 27, 2007

Sorry that it has been so long since I posted. Both babies finally came home on Tuesday. That was a very stressful day, but exciting day. The Home Medical Supplies place didn't bring their equipment to our home until 4pm on Tuesday - we were told we would be released at 10:00am. We didn't get home till around 2:00pm. I had no idea how much equipment we would need. By the time all of the equipment was dropped off, we looked like we just moved in. We had boxes and machines everywhere. It took a while to organize everything in a way that was useful. I'm still moving things as I go. The nights have gone amazingly well. Both babies sleep very good at night. Kinnick's saturation monitor goes off more then Carvers, so we get up to check on her quite a bit. Carver wants to sleep all night, but we have to wake him for his feeds. He has a hard time gaining weight, so we can't miss any feeds. The days have been very stressful. Luckily, I have a Home Health Care nurse that comes during the day to help me. The babies are on so many different meds that it takes both of us to keep them straight and given on time. In addition to the multiple meds, the babies have appointment booked nearly every day. It is a chore to get all of their equipment and them in the car and to the appts on time. I'm not sure what I would do without the help of the Home Heath Care nurse.

Carver has been on 1/4 lt at 100% oxygen. I don't even have to adjust his settings during the day - he just cruises along. We very rarely hear his alarms. He's been a sleepy little guy. He's starting to get a little personality - even starting to smile and coo. We are trying to schedule another BAER (hearing) test to re-evaluate his hearing. This should happen soon.

Kinnick came home on 1/2 lt at 100% oxygen. Her alarms sound a lot, and we were constantly adjusting her flow. By Friday morning, she was on 2 lt at 100% oxygen. We were having to suction her several times a day/night. She was on several breathing treatments, but we couldn't get her oxygen down to a reasonable level. We took her to the doctor on Friday morning and they sent her back to the hospital. She's back in the PICU at Wesley hospital. We were sad to send her back. The PICU is just full of sick kids and the germs are spread so easily in the unit. In fact, the reason she is back in the PICU is probably related to something she caught while she was in the PICU. She had been fluctuating a lot on her oxygen and had started spitting up a lot of mucus before ever coming home. It just got worse from one day to the next. They have tested her for several viruses, but nothing has come back positive. So, sounds like one of those "unknown" viruses. You know - the one they always say your child has when they don't know what's wrong. I'm not sure how long they will keep her. I would like her to be on a more reasonable level of oxygen before coming back home. Kinnick is supposed to get her Mickey Button on Monday. The temp G-tube looks terrible. It looks like a little rubber hose coming from her stomach with a pair of dull child size scissors to clamp it closed. The Mickey Button will be a little cap that just barely sticks up off her skin and is easily hidden. We are trying to schedule another BAER (hearing) test to re-evaluate her hearing. This should happen soon.

Please pray that Kinnick gets well soon, so she can return home with her family.

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