Wednesday, September 23, 2009

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 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.


Ana Alesia said...

Thanks God you are back home! We are happy happy to hear this!

With love,
Alesia and Co

Melissa Howell said...

Yay, you're home. I've been waiting to hear from you. I knew you were busy, but still anxious to hear word that Kaitlyn was ok!!