NO GO!

Well after the doctor came in to say we could go home.....they called down to Milwaukee to Danny's Pulm doctor to let her know the game plan. She wasn't excited about sending Danny home when he is SO dependent on the bipap. So we are NOT GOING HOME....I'm so sad and really bummed. This is normal for us so I don't see what the BIG deal is. Danny has pneumonia and is having troubles breathing.....no doubt he is going to need some help the next few days maybe even weeks, so I don't get it. He does GREAT if on the bipap, but every time he is taken off he struggles VERY HARD and so far today we were only able to get him off it for 30 minutes and that's with 2 liters of oxygen to "hopefully" help, but NO GO! So we are here for at least another 24 hours to see how he can do, which at the moment is great, if their goal is going home off the bipap. ***SIGH***
The nursing care thing is becoming a PAIN IN THE ASS to get paperwork started, approved, find a nurse, and all from the comforts of the hospital. There really isn't an agency in our area so I would have to go with a private nurse, which is fine......but wow it's overwhelming and right now I just feel lost. Almost to the point where is it all worth it.....it's just easier to do it myself? This is a HUGE step for me and right now I'm just feeling I'm getting no help trying to find help, if that makes any sense. Or am I just making a mountain out of all this cuz my head is spinning around?
On a good note....or a bad, not sure how to look at it, but.......NeuroScience called today and the doctor wanted to see me tomorrow at 12 noon. So I guess I'm getting in sooner? Wonder what all changed, but a part of me really doesn't want to know.
Avrianna is LOVING all her camps that started this week. I am glad she has them as her outlet and break from all our craziness lately. Dan is running around here, there, and everywhere, but welcome to my world (as I always say).
I will keep you posted with ALL that is happening with us. Thanks for stopping by....and let us know you were here, we love hearing from you too!

Roller coaster Ride

This morning Danny woke up sick very congested and having to suction alot of yellow goo out of his nose. So we are going to do Mr. Jiggles 3-4 times a day for awhile to hopefully keep the crap out of his lungs. Boy does life change fast around here!!
Well yesterday went so so. Dr. Edgar wasn't too impressed that I took the Topamax down and he still feels the eye tremering is seizure related. So I told him I would put it back to 25mg 2x a day and promised to leave it. He did up the baclofen pump back up to 129mcg a day. And then he did Botox in Danny's arms. I'm not too sure about it but with everything we talked about it seems to be the least thing to compromise his breathing. We'll see...I'm kind of scared with all the scares about Botox but just hoping this is in his best interest and will work.
There is some concern from Dr. Edgar now to Danny's breathing. As at the appt Danny felt the need to breathe like crap and obstruct infront of Dr Edgar multiple times just out of the blue. I know he was aggravated today but nothing to warrant the breathing stuff. Dr Edgar felt I should talk more about the trach (as he finally got to see what I was talking about) as it would be a "better" quality of life for Danny. Dr Edgar thinks that this breathing stuff is "too much" to have to deal with on an on going basis for Danny and I. He also finally sees that increasing the clonezapam isn't a good idea and is now leary about increasing the pump too much as it will eventually make it worse (the breathing). He feels I should talk to some moms that have trached kiddos. Funny, that I was just at Dr Beste's (ENT) and he thinks Danny is awesome and will see us in the Spring. Such a roller coaster!!! ARGH What to do....trach no trach, hip surgery no hip surgery, and again all I wanted to be is a MOM to have that family everyone dreams about!! I can't help but be on an emotional ride...one day is just GREAT and then WHAM you hit a wall, this is just nuts. I don't know what is right any more I just don't want to hurt him anymore, he's been through SO much in his little life. My heart just aches. I don't know what's wrong with me I'm usually not like this....and just when I think I've come to terms with all of this, I sit and ball. I'm so confused, I just don't know what to do. I love him so much this is killing me. How much more can this little boy go through, I just feel terrible not being able to help him understand why I'M doing all this to him. I just want some NORMAL!!!!! I feel so guilty and angery right now. I see all these little boys running around, talking back and playing with match box cars and I'm a mess, I want that for him. He should be starting preschool and making friends. Instead he's stuck in a chair with his mom for the rest of his life!!!! And then I have to ongoingly put him through hell, make life or death decisions, and do things to him that no mother should EVER have to do to their children. What makes me so special and why? So sorry for the lengthly post but needed to vent. I think I'm better just needed to blow some steam, now ready to face the world again, at least for alittle while.
oh yeah Dr D'Andrea office called back and they talked to Dan. I had left the message about bleeding O2 into the Bipap. From his message to me from them (got that) is they were thinking about putting the back up rate back on the bipap, but I'm not liking that idea at all. They didn't mention anything about the O2 and I don't think Dan told them I'm already doing it , but it seemed to keep him in the mid 90's so I'm sticking with that. She went on to talk to Dan about them thinking it's his brain not telling him to breathe fully, now that they got the obstruction thing pretty much taken care of. That would be central apnea, right?
Avrianna continues to be very pale and is starting to lose her appetite so hoping she is not turning the wrong direction too. I think she shared her bug with her brother...ARGH!!
Enjoy life when the ride is up as it cn go down very fast and without warning! Hope you enjoyed the pictures