Another Kya Update...

Well the Dale clan has had it's fair share of excitement today and we are all ready for a LONG vacation!.

Over the course of 11 years, raising a child with severe disabilities who also happens to be medically fragile, you occasionally have to take off the rose colored glasses and look at your life with reality lenses instead. Today we had to face our reality and make some choices regarding Kya's long term care at home. In preparation for wanting to go home sometime in the next year and with all the crazy stuff Kya has been doing (i.e. requiring CPR multiple times) we made the decision to approve a surgery for a Trach to be placed. For those of you unfamiliar with a Trach it is basically a small tube placed in the windpipe that gives us access to her lungs. This choice we felt would be the best option for us to have a successful return home and the best chance of keeping her healthy and alive!

As things with Kya always are we talked to the Docs to ask for the Trach at around 2:00pm and by 2:35 she was being rolled into the OR! It just happened to work out that the ENT was already down in surgery and had an opening avaliable. I am told that in about a week we will be able to have a different one placed that she can breathe in thru the trach and breathe out thru her nose/mouth thus allowing her to vocalize still. It is incredibly scary only due to our inexperience with this particular implant but at the same time I have a sense of relief knowing that our chances of helping her in a crisis are increased.

So as might be expected going home has been delayed but hopefully within the next 10 days.

Kya's Hospital Update - 5/15/2010

YESTERDAY -the staff here at the hospital was talking about going home and getting things shifted around to a do-able home routine. Phone calls were being made and home supplies being set-up to go when it was time.

TODAY- Kya coded again! Her heart stopped and the docs had to perform CPR and re-intubate her again. The concensus is that she has sooooo many lung secretions that she was literally unable to breathe through them and as most of us know if you can't breathe your heart won't beat. This is what we are dealing with right now. They are going to give her a broncoscopy and clean out her lungs at which point we will have a better idea of what we are going to do. The docs think that she should only be intubated a few days to get her through this rough patch.

Now Jonathan and I have to make some decisions to make about her future long-term care... I'll write more after we come up with our answers.

Thanks,
Jonathan & Laura

Hospital Update...5-8-2010

Ok so we have not extubated yet but it's just cause they want her to be a little more awake so she can handle her coughs. She was too dehydrated so they decreased her medication that makes her pee and that increased her secretions in her lungs, causeing her to cough more.

This means we wait another 18-24 hours and re-evaluate but she is REALLY close. They just don't want her to get off too soon and have to be reintubated.

Hospital Update... 5-6-2010

Baring ANY complications we will be extubating tommorow! YEAH!

The docs are weaning some of her withdrawl medications to help her wake-up and as she becomes more lively she should be able to breathe with a little assistance off the ventilator! THIS IS HUGE! YEAH!

So keep your fingers crossed and prayers said cause we are heading in the right direction!

Kya's Hospital Update - 5/3/2010

We really are doing the Tango when it comes to Kya. Yesterday Kya was placed on Cpap (patient initiates breathing and the vent assists in filling the lungs) for about 8 hours. She did really well but we did not want to wear her out so they put her back on a rate of 13 breaths a minute to let her rest overnight.

The docs stopped the sedation medications in hopes of extubating today. This morning they tried the Cpap again and she only lasted 1 1/2 hours because she began to have apnea (stop breathing). She was put back on the rate to rest for a little while and around 3:00pm today they tried the Cpap again. She did nothing and I mean NOTHING! No breathing at all on her own, not a single breath. Needless to say we are back on the rate and partially sedated to keep her comfortable and she is pretty much riding the vent.

This evening she spiked a temp of 103.4 the poor kid feels horrible! Now we culture everything again (blood, urine, sputum) and wait to see what new thing she is growing or resisting. Like I said the Tango!

So we are waiting again.