Anticipation

So sorry for the lack of updates....and the shortness of this one. WE ARE HOME!! Woohoo!! I just got internet yesterday hooked up to the house so I wasn't able to post, plus today is the first night I actually sat down for more then just a few to relax. It's been very exhausting and overwhelming for me. Not only to get Danny in line, but to be in the new house, trying to move, and my MS acting up. I am praying for a good night tonight....as since we've been home things have been touch in go. The fist night home I thought for sure I was going to have to load him up and head back. His heart rate was high, he spiked a fever, and he was breathing terrible. This all started about 2am and this started up again this morning too. We found the humidifier wasn't working properly, instead of giving heated humidity it was just blowing hot air out drying him out. I've had to replace 2 traches in the last 3 days so Danny was primarily on his HME to keep him humidified till we foudn the issues. Today Danny's nurse found the problem and now ALL is GOOD! Lets hope for some sleep!!!

I have had so many people come in the house in the last 3 days, I feel as if I'm being pulled in each and every direction. I so can't wait till we are moved totally in, the lil quirk's about the house have been dealt with and I have Danny's nursing down.

Today I went in and enrolled Avrianna into 2nd grade at Lakeview Schools....I have a very heavy heart. Afterwards I took her to the store and got all her school supplies and on outfit, thinking that would make me feel better, but no go. I came home and pretty much just pouted. I'm in a tail spin right now and not sure which way it up.....this is not helping the MS at ALL. So I've stepped down and instead of living in denial I've hung up my teachers hat, sigh. I don't want Avrianna to fall behind and I'm afraid I won't have enough to time or energy right now for her schooling. I'm really upset about it, but hoping for the best. Avrianna seems to be very excited about it :)

I will try and post more tomorrow. Danny just fell asleep so I'm going to crash. I don't think I will remember my head hitting the pillow. Sweet Dreams!

DISCHARGE!!

Danny is being wheeled back up to the room from getting his new PICC line. Then we are still planning on being discharged at noon. YIPPEE ~ HORRAY! I will try and do another post yet today, but we'll see how smoothly everything goes once home. We are moving right into the new house so that in itself will be an adjustment, but a good one at that. I will be having alot of visitors coming today to bring me supplies and go over the instructions to the new machines so it will be all VERY OVERWHELMING at first, but I'll take it over staying here. Thanks again EVERYONE for all of your support while we were in the hospital. I wish I could say he was better, but we are not there yet. Please continue to keep my lil man in your thoughts and that he will be back to his self again real soon. Signing out as Mom and will sign in back later as Nurse, lol

Out of Control

This morning I had yet again another blow to the heart strings. Danny's hemoglobin is continuing to drop ....not drastically but dropping. We are not to blood transfusion state yet but it's still very frustrating. My heart just sank.....So I had alot of questions in rounds today .WHY is it dropping, Where is the blood coming from that is draining out of the G port, Why is Danny still in pain, and When are we going to get out of here. The doctors feel the bleeding n pain could be coming from the GJ tube as it might be wearing on his stomach lining. With us not being any further ahead with having the GJ tube, well actually farther behind since it's been in, the idea is to possibly pull it and go back to the G tube. UGH!!! The doctors have decided to do another endoscopy tomorrow, so yes he is going to be put under once again during this stay. Just to rule out anything funny that may be going on in his tummy. Then they will get a good look to see if the GJ tube really is or isn't right for Danny. They were going to start him on Carafate which is used to line his stomach and intestines to stop the bleeding, but now that they are going in to see if they can find the source they have it on hold till after the procedure tomorrow.
Danny's Urine culture has come back with growing ONLY yeast nothing else. So they have dropped all of the antibiotics and now he's on an anti fungal med to get rid of the yeast. His trache aspirate culture as also started to show yeast too so I'm glad they have started him on meds.
Danny is VERY lethargic and pale today. He hasn't woken up much and when he does he just grimaces. The docs have also ordered a Xray of his mid section to see if they can see anything out of the ordinary. I can tell they are just as stumped and frustrated as I am with trying to figure Danny out.
We got a couple visitors today. One of the nurses that took care of Danny while we were inpatient at Children's by our home, Heidi. She came down with her daughter for an appt and just stopped by while they were down. Thanks guys...It was so nice to see you. Heidi was Danny's nurse when he coded almost 2 months ago. Wow ~ where did the time go (sarcasm). Then in the afternoon Michael, Danny's home nurse, came down to visit. This is his third visit down the see lil man, it's so nice to see his interest in Danny's well being. :)
In rounds the subject of us getting out of here did come up. The "plan" is (if they don't find anything totally out of whack in the endoscopy tomorrow) to either be transferred back up to Children's (if he's not stable enough) or to go home this week. We should know more tomorrow with what route we are going. Danny is going to be an add on so I'm not sure when he is going down so I will keep you posted. Either way it will still be alot of work to take care of Danny as he is still on TPN n Lipids, not tolerating feedings, and on a PCA pump.
I'm relieved that we are all on the track of getting out of here and getting closer, if not to home. I am hoping they don't find anything more wrong that will prevent us from leaving to go to either place. Closer to home right now is just as good as going home....Baby steps here Baby steps. I just feel as if my life is spiraling out of control lately.....and all I'm doing is watching it fall. Sitting around for 2 month in this box starts to get to you. I'm NOT built for this, this is SO NOT ME. I can't just sit around and honestly I'm super surprised I've made it this long. There is so much to do and so much going on in my life right now it's driving me NUTS just sitting around. BUT it also has been a reality check in more way then one.........take me out the equation and what happens. Dan had suggested last night the we think seriously about home schooling vs public schooling. A thought that has crossed my mind a couple of times lately, but I just don't think we are there yet to stop home schooling. I really enjoy doing it and have a better relationship with Avrianna because of Home schooling. With the heightened risk of bringing germs into the home not only for Danny but just for lil Miss Spleenless I'm not ready to take that on (don't even get me started with the stronger strain of the swineflu that they think is coming).....I don't think we're there yet to put her into public schools. With the thought of putting her in school and getting Nursing for Danny I was an emotional wreck this morning. Then what about me? What am I going to do? I constantly hear "You need more YOU time." I understand that BUT by taking away ALL my responsibilities I would go into an ugly place. It's weird as I understand and except that I need SOME help and in the next step I feel like I'm fading away to being invisible. I need to work on that, I'm not used to ME time and what I should be doing. I don't feel right doing it and feel this overwhelming sense of selfishness, again I need to work on that.
Saturday is the start of the Parade of Homes and I hope to see you there. Here is the link to VHBA for info of the Parade and here's the link to our HOME info sheet.

Going Home! ~ Again

YAHOO ~ We are going HOME! LOVE THIS SMILE ~ doesn't it make your day?Just a quick update.....Yeap, Dr. Natalie is the BOMB! We ARE getting out of here, but not till this afternoon. The requirement is that I NEED to go to my appt first, LOL. What an awesome group of nurses and doctors up here, not only are they concerned and wanting to take care of my lil man but of me too. He did have a nasty diaper this morning that darn near cleared the floor with his sink, so they are going to culture if he has another one for the dreaded C Diff, yikes! NEVER EVER a dull moment

Danny had a visit from a therapy dog this morning.....Kaiser! Thanks for visiting Danny LOVES dogs. Notice no bipap on in the back ground....he has been off now for about 45 mintes...he is starting to struggle alil, but being off for alil while is GOOD NEWS ~ GO DANNY GO!!

I'm still working on nursing but it's going to be a work in progress.

Here he is flirting with his RT last night.....What a charmer and a flirt!?! He's a ladies MAN, LOL