Day 2 PICU

Kaitlyn is doing about the same today, but we are feeling much more comfortable here in PICU in case anything goes wrong. We are dealing with a full blown chest cold. Kaitlyn is plugging lots, and it has been pretty difficult to maintain sats, even with additional O2. I am concerned about her CO2 levels but they are being checked every day. So far I am still doing all of Kaitlyn's treatments. I am starting to feel tired, but will continue until Kaitlyn feels better.

We have changed Kaitlyn's antibiotic from amoxicillin to cefixime. Cefixime is supposed to be broader spectrum, and the amoxicillin obviously isn't doing her any good. We are going to have to see if there is any change over the next couple of days. Kaitlyn is pretty tired and it's a battle to cough her without exhausting her. It's times like this that I wish we could do postural drainage. It would be a lot easier to get stuff out of her lungs if she could relax and let gravity help.

So far Kaitlyn's x-rays still look good, they definitely don't reflect her symptoms. But at least there are no obvious signs of atelectasis or pneumonia. I hope she begins to improve over the next couple of days.

PICU!

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.

Very Sick

Well we now have a full out cold going on here. Kaitlyn woke up this morning and crashed a bit on the first round of cough-assist. Kaitlyn had to remain on Bi-pap today, as she couldn't maintain sats. We have cancelled our Body Brace appointment and have called our pulmonologist(who is fantastic). We wanted him to be aware that Kaitlyn was sick in case we needed him. He asked if we needed to bring her in, but we told him that we would try to stick it out at home. I was doing treatments every four hours and coughing her if her sats began to drop. It didn't really seem as though I was getting a whole lot out of her. Her sats were being affected but I couldn't hear anything in her lungs. She had increased secretions but we didn't seem to be getting any amount up when we coughed her. Kaitlyn still doesn't cough very well with the cough-assist. This isn't helping us any! We are just hoping that we can keep her home this time.

No Change

Kaitlyn has been on an antibiotic for the whole weekend and there is no improvement in secretions, if anything they are even more green. Her secretions are still nice and thin. So far we have not had any trouble with feeds. This cold is definitely different than any she has had in the past. Usually her secretions dry up after only a few days. We have an appointment tomorrow for a Body Jacket so that Kaitlyn will be properly supported when she is sitting up. I think that we are going to have to cancel it, but we will see what tomorrow brings. Kaitlyn has already missed one appointment for this brace.

Something's Up

Kaitlyn started today with increased secretions, with a bit of color. We have called her pediatrician and will start a course of antibiotics. Kaitlyn's sats are unaffected at this point, and she is requiring no extra Bi-pap as of yet. She is also still sounding very clear. But the increase in secretions with color, and no change in diet, sounds most like a cold at this point. Better to be safe than sorry. Hopefully we have caught it soon enough and it won't amount to much.

Neurology Clinic

Kaitlyn had another neurology clinic today. We see our neurologist once every three to six months. He seems impressed with how Kaitlyn is doing. She hasn't yet any noticeable curve in her spine. This is something that my husband and I are pretty careful about when we position Kaitlyn. He also asked us this trip how we would approach newly diagnosed families with SMA children. We were honored to have been asked this, because when we found out about Kaitlyn's diagnosis we were not given any options or any information about choices we could make to help improve Kaitlyn's quality of life. We gave our Neurologist Kaitlyn's care protocol which included her entire daily routine, respiratory therapies, equipment she uses, positioning techniques, diet information, etc. Kaitlyn is the oldest SMA Type 1 that our Neurologist has ever seen. Basically, we just said that we would be happy to speak to any newly diagnosed families and that they should be given options. My husband and I know first hand that the path we chose for Kaitlyn is not for everybody, but we do feel that parents should be fully aware of all the paths that may be taken so that they can make informed decisions about the type of care their child should be provided.

We can honestly say that every aspect of Kaitlyn's care was researched by my husband and myself, and we were given no advice, information or options as to how we could approach our daughters condition. It makes me mad when doctors don't research what is currently being done for a particular disease and give families some options based on their findings. It is left to the parents to help their children survive and thrive.