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.