Wednesday, August 19, 2009

So Proud

The Finished Product! I will post pictures of the inside after the parade ends this weekend.I say this statement all the time.....Thanks Dawn for painting this in Danny's new room. I just had to share this!The plan is to be discharged (as long as Danny doesn't hear or know the plan, lol) on Monday and we will be going straight into the new house. I'm so excited not only to be FINALLY getting out of the hospital but to be moving right into the new house. To be able to show Danny his home, WOW....a reality that it almost didn't happen still bring chills. We are going to do a mini break out on Saturday. Danny got a 4 hour sanity pass so the 4 of us are going to go to the Milwaukee Zoo. I'm VERY excited!!!! I will post pictures of our Zoo experience.Well as you can figure I was able to get out of the hospital yesterday and go home to spend some time with Dan and Avrianna....not enought time, but some time. I can't get enough of this girl, she is my rock. I'm so proud of her! When did she grow up? Our conversations lately have been so "grown up", it's hard to believe I'm talking to a 6year old at times. To leave is always a time full of mixed emotions. As I'm so excited to get out of these four walls and see the rest of my family, but hate to leave my lil man, and then leaving to come back to the hospital is terrible. I'm an emotional mess. Avrianna has been such a trooper with all of this being away from her Mom and Brother for over 2 months, I'm so Proud of her! But enough is enough. It's heart wretching!! I miss her so VERY MUCH....and to have to leave her in the driveway waving good bye while she is crying after she was clinging to me to not leave is so difficult. I HATE this!!!
I have to admit I was not feeling very secure yesterday morning with leaving lil man as his night didn't go very well, GO FIGURE. Danny must have known I was attempting to leave. I woke up to him having a high heart rate, breathing funny, feverish, and a clogged G-tube. But things started to settle down once and we found the source of his "issues" so once we got him back on track with GOOD nursing I felt ALOT better leaving him. THANKS LISA ~ I don't know what I would do with out you. They did alot of changes while I was gone with his feeds. The did a Metabolic cart which involves him breathing into a "bag" and they can tell how he is doing nutrition wise. Really? That is so awesome and amazing. The test results came back that he is getting too much nutrition, hum.....the excessive weight gain in the last few weeks didn't give that away, LOL. So they took away the Lipids all together and decreased the TPN in put. We are tweeking the rates of the TPN and trophic feeds so that he can be off all machines for 4 hours each day. YIPPEEEEE ~ WOOHOOOOOO. We'll see how that goes and how Danny's system adjusts to that. He did have 5 BM's yesterday (oops sorry Lisa and Nanny....not really, lol) and one HUGE one already today so I'm not sure, but going to stay cautiously optimistic. They don't want him to "flush" out too much protein with the increase in BM's. They are going to do labs tonight so we'll see how he is doing by tomorrow morning.
Nanny (my mom) drove down and sat with Danny while I busted out. If you saw a pearl white car with the sun roof open, window's down, radio blasted, and a women driver singing her heart out dancing in her seat yesterday.....Yeah that was ME! *SMILE * It was an amazing feeling. Not only to just drive a car (sporty even) as I drive a full size van (my mustang, LOL) but to have the windows open and the radio cranked up as that would just wig Danny out! When I got home no one was I sat on the deck enjoying the sun shine on my face throwing the ball for my first Baby, Bailey (our dog). She was so excited to see me, as I was to see her :) Once Dan and Avrianna got home we took off to go get some Hu Hot, YUM ~ I love that place! We even splurged and got a Cheesecake for dessert. OOOOOOO yeah! From there we needed to burn off some of our meal so we went Miniature Golfing. What a wonderful time! I so miss hanging out and having FUN with them.

Then we went out the the new house so I could see what they did to the place. WOW! Breath taking....I was so excited to see the furniture in the house. What a difference ~ It's now a HOME! We ended up staying there longer then I anticipated so I didn't get to take Avrianna to get our nails done, which I'm so in the dog house for, but I told her next week when we are home I am going to take her out for the day and just hang out with her. I NEED that I think more then she does. So nails, lunch, shopping, and whatever else we can think of....just me and her. I can't wait!! Her comment as I was leaving to come back to the hospital was she didn't get to talk to me much cuz Daddy took up all of her time, sigh. That just broke my heart.....when did she get so grown up? I LOVE you GIRL! Thanks for being such a good girl, I'm SO PROUD of you!

Not too much in store for today....just going through motions till "D" day. I'm still working on getting nursing for lil man once at home. That is not easy as the supply isn't there for the demand up in the Fox Valley and now that Danny requires a RN it's even more difficult. Another work in progress. So if you know any good RN's looking into being a Home Nurse provider please send them my way :) We are going to get Danny's xrays of his Kypho /scoliosis/ and pelvis some time today so that Dr Tassone can take a look at them and we can see where we stand with that for Danny. Danny is showing signs of discomfort in his right hip once again so we need to pin point is it the hip solely or is it the pump too. Alot of issues still are apparent for lil man but we just need a break of this place before we start on another path. Known issues at this time are still: Catheter for Pump is almost out of the spine, the pump is floating so still causing pain, the right hip sublexed, new diverticulum in the left kidney, liver functions up, and Stomach n gut still not working properly. We will see today or tomorrow how bad his back has gotten to see if that needs to be put on the acute issues list or not. *Sigh* Lil man NEEDS a be cut a break SOON! Please keep our newest friend Jadee in your thoughts....she has had a rough time and they need all the help/support right now. She has had multiple surgeries do to a staph infection. Last night she went into emergency surgery as the last attempt to get her wound to heal had failed. They are amazing people and I'm truly blessed to have them as friends. Please click HERE to see her story.

1 comment:

Susanne said...

My husband and I visited your new home this evening, to say we were blown away was an understatement.
I googled you when I got home, and have spent the last few hours reading every post on your blog.
A few made me laugh, some made me cry, all left me hoping that the next time I visit, you have a photo of Danny on the awesome fire truck in his room.

Your home is lovely and we could see the careful thought that went into all aspects of the desing and construction.

Hoping you can enjoy it soon as a family.

Susanne Nash
Appleton WI