Sunday, July 5, 2009

Blahhhhhhh Day!

I like these days! Not too much to report and not too much going far. I've decided to have a lazy day....I'm still in my jammies and really have no amibition to get out of them, LOL.. Danny decided to take a long nap so it's a lazy day for hime too. Danny was alil upset and irritated last night/early morning causing him to run alil temp and then start to desat for awhile so the doctors upped his O's and Ibuprofen.
He still continues to have nasty diapers so they are going to give his gut a break still and not feed him yet. Danny will still be getting his nutrients through tpn/lipids via IV, until his diapers start to look better. No sense on rushing Danny as that'll just set him back to the beginning if he's not really ready, which will just make our stay longer.
We were able to see a whole bunch of Firework shows last night from our view, but it just wasn't the same so about 5 minutes into it I decided to run down and get an ice cream sundae instead. That was much better then the fireworks show :)
The doctors are looking to get a Care Conference together tomorrow or Tuesday so they all sit down round table and discuss the Trache procedure. I believe it will be done next week some time also. I so hope this will make Danny's breathing better, keep him off the machines, and give a quality life to my lil man that he is entitled too.
Everyone (including me) has to get over the word Trache in their own time. It's a scary word and the misconception is that it's a end of life thing, but on the contrary this should give Danny a better longer quality of life so he can enjoy life instead of struggling to breathe to live. I went through this struggle when we put Danny on Palliative Care in his earlier years and that too is a great program to help give him a longer quality of life NOT END OF LIFE. I already bi pass his floppy and poorly structured airway with his feeding tube to feed him and this is really no different. His lung function is working properly it's just the upper airway causing him grief. We knew this could be in our future for Danny so it's not like it's a surprise, we've done EVERYTHING we could to delay the inevitable and now is Danny's time. I needed to have a mind set of why would I NOT do it and who am I really NOT doing it for. I could only say it was because of ME and that would be selfish in my part and so far in our journey all I've done is be selfless so why change now. We've had a very long road, alot longer then most have thought, to dodge the Trache. I would be a hypocrite if I didn't give every opportunity to let Danny shine, with all the we've done so far in his lil life. If you look at the BIG picture his is already on "life support" we feed him with a feeding pump and he has a bipap (that since this illness he hasn't been able to get off of for more then a couple hours a day, that's not way to live). Hopefully we'll be able to (once the trache is in) have him off the bipap once again and the suctioning cares will be get ALOT easier. Of course it does come with it's list of cons, but the pro list is so much better right now.
I will keep you all posted on our time line. All I know is once the trache is done, it will be week before I can start learning the cares myself. I was told that after the trach is in it can be anywhere from 2 weeks to months before we are able to go home. It all depends on the home nursing care......luckily we've started the process to get a nurse in the home, but that could take a month for it to go through. Then the biggie finding a nurse to help us care for him. The will NOT let us go home until we have one, sooooooo.............Know any good nurses that are trache/vent certified? Send them my contact info!!!!! It looks as if the summer once again is repeated as last....Hospital bound :(

1 comment:

Amy said...


You have no idea how much easier your life is going to be with the trach. You won't have to worry about his airway collapsing. We choose not to do it for Eli when it was first presented to us. He didn't have to have it at that point. We researched it, talked to our doctors, talked to the many nurses we know, talked to other parents of kids with trachs & decided against it but knew the day would probably come. It seemed like such a scary option & most people made it sound like our lives would be over. 3 months later, he showed us that he needed it or he'd be hospitalized in Madison everytime he had a cold & couldn't breath properly. We almost lost him & didn't want to go thru that again. Yes, we had to add trach cares into our daily routine but that was nothing after spending so much time repositioning him to breath correctly ALL THE TIME! Eli has not been hospitalized since he got his trach 3 1/2 years ago.

We were fully trained & had him out of the hospital 2 weeks after the trach. I was on a mission to get our lives back to "our normal." We went home without nursing. They made us think we couldn't leave without nursing but we fought & got out without it. We still choose to not have a nurse because that's what works best for our family. Our hospital wasn't used to parents willing to learn about trach care so quickly & want to go home without nursing. I had to really fight but we got what we wanted.

If you have any questions or want to talk, please email me.

Amy (Rosenthal) Randall
Eli's mom