Wednesday, May 14, 2008


I was up twice through the night with Kaitlyn. I coughed her and had to do a lot of chest physio the second time to get her sats back up. Kaitlyn hasn't a Nissan and cannot tolerate laying even flat or she will spit up, so postural drainage is not an option. We find that chest percussions help to bring up more than she can on her own. She slept pretty well through the night. Her sats began to drop in the morning so before I woke her to begin her morning treatment, I got the O2 ready to bleed through the cough-assist. I woke her and started her morning therapies. With the O2 through the cough-assist she didn't crash as bad as she had through the night. After the boys were fed and all of Kaitlyn's machines were set up within close reach Tim headed off for work.

As the day progressed Kaitlyn was getting worse and worse. By afternoon her lungs were starting to fill up. We have never handled a chest cold at home before. I know how to change the settings on her bi-pap but was unsure as to what changes to make. By early afternoon Kaitlyn had a bad crash after coughing her and needed to be on supplemental O2 while on bi-pap to maintain sats. I was trying to do every three hour treatments. I was still home alone with the boys at this point also. At one point Kaitlyn crashed down into the fifties for O2 and it took me several minutes to get her back up into low nineties. At this point I called Tim and told him to come home, and call his parents to come to the city so that we could take Kaitlyn into the hospital. The grandparents live two hours away so I then called our pulmonologist back and told him that we would be in. He told me that he would meet us in emergency. I asked him to call PICU so that if we were to stay it would not be on the floor. The nurses in our PICU don't know how to use the cough-assist, but at least they have seen the machine before and have RT's available at a moments notice. The nurses on the floor have never even seen a cough-assist unless they have been Kaitlyn's nurse before and the RT's are only available when paged. Sometimes our children don't have time to wait! (There is only one cough-assist in our whole children's hospital!)

When we arrived in PICU we took x-rays and waited to be admitted directly to PICU. Her x-rays didn't really show very much. There was questionable infiltrate in the left central lung, but x-rays are subject to some argument depending on who views them. Regardless, her x-rays didn't fit her symptoms. Her CO2 level was 38 which is normal for Kaitlyn. This was good because we were worried about the additional O2 we were having to bleed through her bi-pap.

We headed up to PICU when emergency had done everything that they needed to do. I stayed with Kaitlyn while my husband went home to be with the boys to maintain some normalcy in there routine. They love their Grandparents very much, but there is no replacement for Mommy and Daddy. When Kaitlyn is in hospital my husband and I never leave her alone. I stay with Kaitlyn and when he comes to visit everyday I go home for a couple of hours to be with the boys and get a shower and a hot meal. I also do all of Kaitlyn's therapies in hospital. The cough-assist is a very new piece of equipment in our hospital. Most of the nurses have only ever seen the machine and a handful have actually used it, but never in the automatic mode and never on a patient as fragile as Kaitlyn. They have used theirs once or twice on a child post surgery. I don't really want them practicing on my daughter while she is this sick. Hopefully I'll be able to keep up with all the treatments.

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