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.

Sleeping Boy

Well I can defiantly tell lil man has something brewing. He slept most of the afternoon yesterday, all night last night and has been out most of the day today. His urine cultures still show yeast and it did grow out an infection, but lab forgot to report what bug grew out in the culture. DAH!!!! So the floor docs are looking into it....the bet is that it is the VRE that has flared up. In a way I hope so as then we can be treating it and we can be out of Isolation when in the hospital. The blood cultures haven't shown any growth, Yippeeeee. And the trache aspirate still only shows psuedemonas, but he had that even before the trache was put in. He has thicker secretions today, we are keeping a close eye on him, and we might send in another aspirate culture down it's that thick :(
It sounds like Danny will possibly be going home on TPN n Lipids. As now they think this is going to be a very long haul for him and this gut paralysis might be more then just a "break" from all of what has happened to him lately. Danny's bowels are just not working properly yet and there is some concern when or if they will start back up....his bowels will have awesome sounds like he is going to explode and then there is nothing. It took two babylaxes to make him go yesterday and he BLEW, WOW. All liquid still no substance at all, so his body isn't absorbing yet. But if you think of it....that takes talent to hold all of that liquid in. He is doing better today with the Zophran on board for the retching so they are making it a scheduled med instead of an as needed cuz it's ALWAYS needed.
The GJ tube isn't as effective as they had hoped not only for the feeding aspect BUT it the G port isn't draining well. It's like the port hole is stuck up against the wall as we have to manipulate the tubing alot to get it to drain out. We have been trying to drain the G port for a day in a half with alot of bile, secretions, and blood coming out. His belly is still actively bleeding so we are looking into the cause or reasons for that. AUGH! Just another thing I have to deal with.
Dan is going up to Tomahawk today and retrieving my princess. She's been hanging up there with Papa n Claudia for the last 2 weeks. Can you say SPOILED ROTTEN, but that's what grandparents are for. Spoil them and send them home, right? Then she is for a fun fulled week at Gym Camp. She a busy girl....I'm not sure where she gets that from, LOL.
Well the house is getting wrapped up with odds n ends as the 15th is the start of the VHBA Parade of Homes . Click HERE as they updated the info for the parade today on their site. Hope you enjoy the Parade!

Back in Surgery

The last couple days have been crazy! Sorry for the lack of updates yesterday, but I was able to bust out of the hospital for the day to go to the new house and start the decorating process as everything is starting to come together. I left here around 9:30am and I got back at 10:30pm while Dan came down to hang out with lil man for some much needed Male bonding. When I got back I was exhausted and just wanted to crash. It was a long, stressful but productive day. I was totally overwhelmed when I entered the house, WOW. I had tears in my eyes thinking Danny came very close to not seeing HIS home. The reality of all that has happened to my lil man in the last couple months hit me like a brick. Then reality hit of how much stuff I had to do in such little time....I went into GO mode! Don't forget to stop by the house during the VHBA Parade of Homes to check out our home, by Mike VanHoof Custom Family Homes.
Danny is finally in surgery.....only 5.5 hours late, but "Git-R- Done". Right around 1 this afternoon of course lil man got VERY irritated and spiked a fever. DANNY!!!! So I gave him a cool wipe down, the nurse gave him some additional pain meds, and we hoped for the best. By the time the OR was ready for him his temp did come down alil but he was still high (rectally) so we pulled the rectal probe and he was good to go, shhhhhh. Last night and this morning he started to wretch again on only 5-10cc of meds in his tummy so they ran a PH level of his tummy contents and IF the prevacid was working his level should have been about 6, Danny's was 2 so that isn't good at all. Which I can now chalk up another reason for his discomfort, sigh. I can only hope after GI does their thing we get some much needed answers gut wise for Danny. First off tonight Urology is going to pull the stent and blast the stone on the right side. Finally taking care of the kidney issues so we don't have to worry about that. Then GI will come in and they are planning on doing on Endoscopy (scope going from mouth down into tummy) and a Colonoscopy (scope going from butt through intestines) with doing some biopsies in hopes to find answers to Danny's wretching n diarrhea issues. I believe tomorrow they are planning on taking him down to IR and having them put in a G-J feeding tube before we start to attempt the feeding again. Surgery should take about 2.5-3 hours so I should see him back in the room in about an hour. Danny was just miserable today so I was glad they were able to still get him into OR tonight as I'm not sure what we were going to do with him over night he was so uncomfortable. I will post once he gets back to the room and settled in!

Shopping land

This morning the kids, myself, and our neighbor went to a Holiday Parade and we had a very nice time. There are ALOT of Shriners around here, I believe they were in about 1/2 of the parade...clowns,bands, jeeps, I was surprised. One of the clowns (Smiley) came over and chatted it up with Danny for awhile, it was nice to see someone coming up to Danny and just talking to him not talking to me about him. I know Danny enjoyed it!
Then after the parade we went shopping, YAY!!!!!! My Christmas shopping is done, I need to pick up 2 more things that I want to get Dan, but for the most part I'm done. I even got all of my purchases from today wrapped, WOW! What a load of my shoulders to have it done. Thanks Linda for going out shopping and enjoying a wonderful day with us. I did find a great find in my shopping......I found a great photo book for Danny's scrapbook that I am going to put together for him for Christmas. I can't wait to get it get it together for him!
Three more days until Dan comes back to the sunny state. Wow ~ did the time down here go by FAST, but I am looking forward to going home to get up the house decorations up. Next year (NO surgeries) so I might just try the whole holiday season down here.....as I am NOT looking for forward going back to cold and snow, YUCK! I can NOT get used to the cold and snow at all.
Tomorrow we are planning on a low key day.....I believe it is going to rain here anyways so it should be a good day to loaf around the condo. Take care!

2 Notes
*Keep Danny's good Buddy and his family in your thoughts as Ryan is having alot of painful medical issues lately. You can check him out on his link to the Left.
** Please send out your pictures and messages to Danny(by email or email me and I will get you my mailing address if you perfer that way) if you'd like to participate in Danny's Christmas scrapbook. I am making a scrapbook of ALL that of been TOUCHED BY DANNY'S LIFE!