Home Again

Sorry for the long time between posts!! Kaitlyn got home last Friday the 18th of September. So what happened.....

Kaitlyn's sputum cultures (mucus from her lungs) came back from the lab positive with both Pseudomonas and Stapholococcus Aureus bacterias! Both of these buggies are serious on their own. Not to mention hard to treat. Kaitlyn colonizes pseudomonas. This is not something that anyone with a normal respiratory system would be susceptible to growing in the lungs. Kaitlyn grows two strains that are both now resistant to the oral antibiotic that we usually use to treat pseudo at home. This medcation is really the only type of oral antibiotic effective against pseudo!!! GREAT! The Staph buggy also turned out to be a fairly resistant strain. It was the Staph that Infectious Disease figures was the cause of Kaitlyn's illness this time around. I think this is the longest illness we have dealt with so far!

In hospital Kaitlyn was placed on two IV antibiotics to get rid of the buggies. After about two days I started asking about getting things in place so that we could take Kaitlyn home and administer the IV meds at home. At first they were telling me that there was no way that we could go home with IV antibiotics....I raised my eyebows and said that I knew for a fact that people DID go home on IV meds and fluids and even TPN when needed!!!! I was only asking for the same rights!

When we are in hospital we do ALL of Kaitlyn's care. The nurses are not familiar with Kaitlyn's equipment, including her cough-assist, and especially her bi-pap. These things are not extremely complicated peices of equipment, but we would have to teach their use twice a day with shift changes and then it takes TIME to get familiar with Kaitlyn specific techniques. We usually spend a good two weeks to train our home nurses to care for Kaitlyn when she is healthy!! It's a whole new ball game when Kaitlyn is sick!!! The "rules" change...she becomes a LOT trickier to deal with. That said...we find it soooo much easier to be at home when Kaitlyn is sick but relatively stable!!! It disrupts our whole family when we have to go to hospital :o(

In the end they agreed to let us home on IV antibiotics as long as our regular nursing service could arrange to deliver the meds. I did learn how to administer the meds myself, but did not take it upon myself as they took away all of our regular service. Tim and I had been working around the clock for three weeks at this point and the last thing I needed was more work!!!

IV antibiotics were finished this Wednesday and Kaitlyn has been switched to two oral antibiotics. One covers her pseudomonas somewhat and the other is knocking the stuffing out of the Staph buggy :o) Our goal in leaving her on antibiotics (hefty antibiotics) is to completely knock out the Staph buggy!!!! The last thing we need is for her to colonize such a NASTY resistant bug!!! ID (infectious disease) had a hard time finding antibiotics that would cover all of the bacteria that Kaitlyn was growing in her lungs. She was even resistant to the newer generation antibiotics that they wanted to put her on!!

So now we are trying to get back into our "normal" routine. It's tough for all involved, especially since Tim and I are still trying to catch up on lost sleep! We are just so glad to be back home! Here are some recent pictures of the kids.

Kaitlyn is REALLY enjoying these kittens! She loves it when they come lay down with her. This little black and white kitty LOVES laying beside her and doesn't even budge or wake up when we turn the suction machine on!!!

Alexander loves the kitty too! This little kitten doesn't mind when they pick him up and cuddle him....he doesn't have enough sense to run :o) But seriously the kids are soooo good to him.

My boys outside in their PJ's playing in our yard one weekend. Tim and I didn't have time to fight with them about getting dressed....so out they went. They'd live in PJ's if we let them ;)

I love my diapers!! This is how I found Alex one morning, laying on top of Kaitlyn's diapers. He looked like he was sad that he no longer needs them :o)

This is Owen on his first day of school.

In Hospital

Where to begin....

Kaitlyn had her Port-a-cath surgery August 27th and like I said everything went just fine! She came home and had a slight increase in secretions which is normal after being intubated. After about 3-4 days she is usually back to her baseline. By the Monday (four days) post surgery Kaitlyn's secretions were on the rise and not getting any better. She also started with a bit of a cough on Monday. By Tuesday she was bi-pap dependant, but not because she was desatting. She would go into fits of continuous coughing every time we took her off of bi-pap. Secretions were still on the increase and we thought that perhaps she was getting a cold. By Wednesday post surgery Kaitlyn spiked a fever of forty. Considering she just had her port placed we worried about infection in her blood so we brought Kaitlyn into ER to have them run some cultures and figure out what was wrong.

The cultures from ER all came back negative and in the meantime we had taken Kaitlyn back home to care for her. So from Wednesday until the following Monday (1 week since onset of symptoms) she still had fever that would spike to forty every time we took her Tylenol away and she was still obviously junky and sick! On Monday (Labour Day) we took Kaitlyn into ER again as she obviously wasn't getting any better. She had even come down with a new issue of not digesting her feeds very well. Kaitlyn was started on Ciprofloxacin as it is the antibiotic of choice due to her colonization of a particularly nasty bacteria pseudomonas.

After starting an antibiotic Kaitlyn usually responds very well to treatment. Within a couple of days we can witness a remarkable change in her symptoms. This time after five days of antibiotic treatment in our home she still wasn't getting better. She was only digesting about 1/3 her normal volume of fluids. We also had to take Kaitlyn's normal formula down to a base mix, which means that she was getting a lot fewer calories and less of all other nutrients. We did this as Kaitlyn won't digest her feeds otherwise. So we brought Kaitlyn back into ER yesterday (Friday) as we really felt that she needed IV antibiotics and IV fluids.

Our stay in ER was really ridiculous! They kept us there for a total of six hours! SO much for her protocol!!! Five hours after waiting around ER the attending pediatrician from the floor told us that they would admit us for the night, but that they didn't want to change any of her meds. and they just wanted to observe her through the night!!! I told the physician that we've BEEN observing her or the past five days at home and she is not getting any better. I said that if I wanted to observe her for one more night then I would have kept her at home!!! There was a resident shadowing the physician and I thought his eyes were going to pop out....hehehehe!! Long story short they called Kaitlyn's pediatrician who is in charge of one of the teams at our hospital and whom Kaitlyn is always admitted under!! She told them to start the IV meds. but left the fluids up to them. So IV meds were started Friday night and fluids were not.

This morning (Saturday) Kaitlyn is about the same. Because they didn't start the fluids like we had wanted she was pretty dry...so she sounded great when the nurses listened to her. This as we know can be dangerous as if she gets too dry we may not be able to mobilise the junk in her chest to be able to get it out! When Kaitlyn's pediatrician came in to see her this morning she wanted her started on IV fluids. They don't want to give her much, just enough to keep her better hydrated so her secretions won't be so thick!

Overall I think that we needed to be in hospital and now that we are here she will be followed properly so that we can figure out how to keep her from getting sick because of pseudomonas. We may have to start some sort of preventative regimen in order to keep her healthy! Oral cipro alone doesn't seem to be working for her anymore. I'm glad that she will be followed by Infectious Disease from now on...we have been asking for this for some time now! Infectious Disease wants to leave her on IV cipro until they can figure out exactly what it is Kaitlyn seems to be culturing and then hopefully we can check for sensitivities and get her on one or more antibiotics that will knock those buggies out of her!!! Infectious Disease also wants to run a host of other tests (not the standard run of the mill). I am much happier today knowing that they are finally going to DO something to help.

I have observed today that Kaitlyn's tidal volumes are pretty low (60-80) depending on her leak!! That's pretty low for a child her weight. I have also noticed that she is paradoxical breathing while on her vent, and this shouldn't be the case. So far her blood gases are good, but we may have to increase her pressure settings to make her more comfortable so that she isn't having to fight so hard to breathe!!! No wonder she has been sleeping almost 24/7 at home! I don't know how long she has been breathing this way either...I hope not long. I always wonder how much I fail to pick up on when we are home...as I have more responsibilities at home and more distractions. When we come into hospital Kaitlyn is my number one concern as I know my boys are being WELL cared for (Thanks to Grammy and Grampy!!!).

I'll keep everyone posted on how we make out! Right now we are where we need to be!!