Set Back

This morning Danny continued to wretch and have diarrhea even with having only Pedialyte through the night. He wasn't tolerating any of his morning meds in his tummy either, sigh. So he is back on IV meds and tomorrow they'll be starting him back on TPN n Lipids once again. It's So Sad, I was prepared for a set back, but not this FAR back. Back to ground ZERO ~UGH!! Today he has been peeing like a race horse ALL day and he is now at about 1300 negative output vs input. The day nurse did question his amount to the attendings that were on today, but they didn't seem too concerned....UNTIL we got to the night shift. They have done blood n urine work ups to check his electrolytes, cultured and they are looking if he's got an infection brewing. The night nurse "dipped" he urine and it had shown multiple red flags for infection, WONDERFUL (sarcasm)! We should know more in a few more hours. Danny is scheduled to go back to surgery on Wednesday at 1pm for the lithotripsy (stone blasting) and then GI is going to do an endoscopy to see what they can find in his lower GI tract, if anything, that would be causing Danny so much grief with his intolerance to his feeds n meds now, as if the kidney stones weren't enough, *sigh*.
Today Dan came down to visit us. Avrianna is still up North with Papa Dan n Nanna Claudia so he didn't have his driving partner with him. Even in the mix of our chaos here at the hospital today, after Danny settled down, Dan and I went out on a "Date". I had a great time.....we went to The Cheesecake Factory (we've never been there before) and sat out on the patio in the warm sunshine n fresh air shooting the breeze for over 2 hours. It's amazing how fast time flies when you are having a great time! The food was great, drinks were better, and the dessert well AWESOME. Can you ever go wrong with Cheesecake? Then we came back fat n sassy, heehee ready to take on another task.....TRACHE change. Dan put in his first trache today, Woohoo! I'm alil jealous how well he did, he handled it better then I did. So now Dan and I are fully trained and are independent on Danny's trache cares. There, now when we get the green light to GO (maybe next year, lol) that will not hold us up any longer then needed. The BIG question...When are we going to get out of here? We'll as we all know Danny dictates what's going to happen around here, but IF (and here I go with the IF's) everything goes smoothly next week and they don't find any new issues with Danny we could break out of here the following Monday after surgery. So we are looking around another 10 days, UGH. Who would have thunk we would be spending the whole summer in the hospital! But thanks a BUNCH for following our story and sending your words of encouragement! Some days that's all I have to keep me sane for another day. Please sign our guestbook or leave a comment we LOVE to hear from you too.

Stressful end to the Day

Danny's afternoon went well...he was up, alert, and I even got a smile or two out of him. As you can see he looked AWESOME!! He and I snuggled in his bed and watched a few shows and a movie (I can't remember the last time I sat around and watched so much tv before, wow). I was a great afternoon with just he and I. Then around 4 shit it the fan....literally! He started to wretch so hard that he was shooting flem out of his trach, along with his mouth n nose, as I tried to vent his g-tube to relieve some pressure. Again I need like 8 hands when he does that so I can suction everything. Then started the diarrhea, OMG! He had five full diapers in a matter of 3 hours and has been a wretching fool so we just gave him some zofran, that should help with the nausea. Well the feedings are NOT agreeing with him AT ALL. We have stopped the formula feeds for now and replaced it with just pedialyte through the night. We'll see in rounds what else they have up their sleeve. Not too much to report other then I've been at his bed side most of the afternoon n evening to catch, suction and wipe the goo!

Crazy Morning

Danny's Room n Balloons.....he loves to watch them

They just came back from surgery!Still trying very hard to "UP" him out of here...guess I talk so much about the movie we should watch it, LOL

This morning has been NUTS here. Danny woke in the middle of the night crying as he peed, but then feel back asleep with some pain meds. He woke up this morning around 7 and was in an ok mood.....until he had a Seizure and then chain events to wretching, UGH. We administered Diastat so Danny is peacefully sleep right now. Once he settled down I cleaned him up, lotioned him up and did his trache cares so now he can just rest. Danny's temp has gone up some, but his heart rate and blood pressure are still high. His Sodium and Magnesium levels are low still too, so on top of the pain factor I'm sure this all aided in his seizure this morning. Poor lil man! I think he just wants to play with his nurse today, LOL. He definately has been keeping he busy, LOVE YOU MONICA! I did talk to Dr Durkee this morning about the surgery and now we ALL are on the same page....The left kidney that they had the stent for last week had the "pocket cyst" in the upper lobe of the kidney. He opened the pocket that measured about 1cm and there was NOT a stone in it but the starting of one....it was filled with white goo. Dr D opened it, drained it, and cleaned it out. Then he went for the right side which we know his a 4mm stone in it....well the ureter on the right is just as narrow as the left so they had to put a stent in to stretch that out. I am awaiting to see when they can get him on the surgery schedule in the next 1-2 weeks. I'm sure that we will NOT be able to bust out of here before Monday. So IF we can get his home feeds tolerated , IF we can get his electrolytes better, IF he can tolerate oral pain meds, IF the home care delivery can get all the new trache stuff to the house, we might be able to go on Monday. Now if they schedule Danny for surgery Wednesday or before of next week then we'll just stay here and GET 'R DONE. Anything further out, and if all the IF's are in place then I'd rather go home for awhile. Danny and I haven't been home since June 14th, it's been a LONG TIME. Another summer shot in the ass but I can only hope this means for better summers down the road. HOPING!!!!!!!
Wow ~ what a morning! Jammie day for me :) I'm eating brunch right now....as breakfast really didn't sound good and I was hungry so I went down and got some steak, pasta, and grilled veggie. Works for me!

Back to Room

Danny is back into his room, he came up about 7:15pm. I have good news n bad...the stone in Danny's kidney on the left side is gone, they blasted it out. It wasn't 1cm is was only 4mm, that's better, it was in a fluid pocket so it looked bigger then it actually was. The bad news is that he has another stone in the right and they were not able to get up that ureter either because it's too narrow, so they put another stent in now on that side. Here we go again!! This is so getting OLD, but once it's done we shouldn't have to come back for a LONG TIME!

In OR

Danny is in OR ~ WOOHOO! They were running late in surgery, but that's ok as long as lil man gets taken care of. They said it could be 2.5-3 hours to complete the procedure. My biggest concern is that I had to repeat to them the reason why Dr Durkee was having Danny in surgery. On their paperwork it looked to be that he was going in to take care of the cyst on the right kidney first then if all went well he was going for the small stone in the left..HMMMMM, UM NO! The stone on the left is a 1 cm stone which is NOT small and it is the PRIMARY reason for going down. I told everyone in the preop clan before they took him down....that Danny had better not come back to this room with the stone or I'm going to be one UNHAPPY MOMMA! If they can get to the cyst then woohoo, bonus, but the stone n stent better be GONE. Danny had been miserable since the stent has been placed. Now I'm very nervous and anxious even more.
Ok just before I hit send they called to the room.....they were able to get up the left ureter and find the cyst pocket in the left kidney that also had a small stone in it. They are lazoring it right now. This is good news....except I hope they are still going for the trouble spot the right side.
I went down and got him a HUGE balloon that sings for when he comes back into the room, it plays the song from "Friends". LOL ~ what fun we have here. That's all I know right now, I will post again later.

Still waiting

It's 4 and Danny is still in the room. The are running late in surgery, but I've been informed they are starting to get the OR room ready for him. It's been alil crazy here today, not even sure if he was going to be able to go. With the lack of peeing yesterday his Sodium levels have dropped significantly so we had to give him lasix to make him pee. His numbers have come up alil but they are still not impressive. Then he has decided to drop his temps out of the sky. He continues to drop and that is with 2 warming blankets on and two big fleece blankets ontop of them. Now with the lasix his bladder is getting bigger n bigger and he has been VERY upset and in pain. We have been giving him more pain meds in the last hour just to keep him comfortable before they come and get him, but they are not doing the trick either. I will post more once they take him down, but this is all I know right now.

Surgery

Tomorrow at 3 pm my lil man should be in surgery for his kidney stone and cyst. From what I gather they are going to pull out the stent and try to go up into the kidney with a probe to "blast" the stone. Then they flush out the kidney for the particles to wash out so they may have to insert another stent if they think he is going to pass more particles after the procedure. Lets hope they get them all out and we don't have to worry about another stent as Danny hasn't done well with this one being in. Now if for some reason they pull the stent out and the ureter is still too narrow....I've gotten two different case scenarios from two different docs. First one told me that they normally put in a bigger stent and try again later, of course, I disputed that option highly. The other is to open him up and go get the whole stone out that way. I would rather that then put him through another stent ordeal. So I am going to let them know that if they go in through his willy wonka and can't get the stone to NOT put another stent in and open him up. I will keep you posted tomorrow as I everything plays out.
Today was a relatively uneventful day. Danny's pain was pretty much under control, with just a couple bouts of crying out and us having to press the pain pump. His "newest" issue is lack of peeing today. Well it actually started last night.....where he hadn't peed in awhile so they cath'd him. They didn't get much out at 9pm, he peed over night 115 (which over nite is usually 300-400), then all day he only peed out not even 100 (which should be close again to 300-400). So where did all the peepee go? The doctor don't seem too much concerned as of yet, but you can bet I will bringing this up to Palliative care and Urology tomorrow. My concern is the stone fell down and is blocking the opening of the stent not allowing the peepee to drop from the kidney to the bladder, but I was told that really isn't a possibility. Hmmmmm, my Mommy gut is saying something different? Well we'll all see tomorrow. I crawled into Danny's bed tonight and we watched Peter Pan and then Tinker Bell together, it was nice to have some snuggle time with my lil man. As lately he hasn't wanted to be even touched he's been so sensitive. Then I sat back and had a glass of wine (thanks a million Meghan), I'm writing this and then heading of to bed.
Today I also had a nice meeting with a women that is interested in home nursing for Danny, if we should ever be able to get out of here, LOL. She was very nice and I think she would do great with him. Now just figuring out a schedule that will work for everyone. Between all the interested nurses I can have full time nursing, but I'm not sure WE are ready for full time yet. So I have to discuss things with Dan, have a heart to heart with myself, and see where everyone stands if I'm not ready to go full board into full time nursing right away. I agree and have excepted that I need help once in awhile with Danny but having a nurse around everyday for 8 hours Mon-Fri, I just don't see the need yet? My thought is to start with them 2-3 times a week from anywhere of 4-8 hr shift depending on the day and what's going on, and then maybe a weekend a month. I'm not sure yet, but I'm hoping to get a better grip/idea as you all know I like to have some what of a "game plan" and be prepared before things happen. Yeah the OCD is starting to kick in, LOL.
Thanks again for following our ever lasting story. I have has alot of you ask how am I doing with my new diagnosis of MS. Well I'm doing well....weirdly enough most of my symptoms of subsided right now so all it good there. I haven't been able to start my treatment yet, as I've been here since the diagnosis and I need to be trained on my daily injections before I can start them. I appreciate all of you kind and encouraging words. Please sign our guestbook or leave a comment as we always like to hear from you too

Last night was pretty decent for Danny, woohoo. He slept till 4:30am and then after a dose of benadryl he fell asleep till 6:30am. From what I gather the PCA/narcotic can make some of the kiddo's feeling itchy so the nurses thought not only for the itchy feeling but maybe he'll sleep longer with the benadryl. Which he did, Yay! Danny has been in a pretty good mood most of the day today too. I even got smirk out of him earlier...it's so nice to see him not in constant pain or sleeping all the time. He is sitting up and watching tv as I type. The nurse and I gave him a bath this morning and changed his linens so he is all clean, SNIFFFFFFF :)
The Urologist came in earlier and unfortunately the scheduler didn't put Danny on the surgery schedule as he had requested yet. So he thought it would be a couple of weeks out yet, WHAT!?! I guess my eyes must have popped out of me head at that moment. I told him we pretty much are just sitting here in "holding" waiting for this surgery....and I'm not going to wait here 2 more week to get it done. I want to go home and be with my family it's been long enough being apart ...I miss them SO MUCH. So if that truly is the case 2weeks out then I think we'll go home, keep his pain under control there, and then come back for the surgery. I NEED to get out of here, before I totally lose my mind. LOL They were going to get back to me today or tomorrow with the date for the stone surgery. UGH
Today Danny did a trial being on a Passy Mur (speaking valve). Can you say ROCK STAR!! He had no troubles with it at all, WooHoo. So we are going to continue working up the time fram using the Passy Mur in hopes he can be on it longer when awake so he can learn to use his voice again. SMILE :)....I'm one HAPPY Momma.
Tomorrow I have another meeting with a nurse that is interested in being more full time and possibly taking over the care coordination for my lil man. I talked with her on the phone today and I have high hopes with her. We'll see how tomorrow's meeting goes.
Avrianna is back up north in Tomahawk getting spoiled rotten by Papa n Claudia. She always has a blast up there and this time they signed her up for VBS at the local church this week so she should enjoy hanging out with more kids. Dan is trying to maintain the old house, new house, and the laundry solo. I'm surprised he hasn't lost his mind as of yet too....I'm sure we are both VERY CLOSE. I so can't wait to get Danny back on track, move in the new house, and getting the nursing in play so we can start to do things as a family again. It's very rough on all of us and we ALL need some much needed fun time TOGETHER!
Figured I would show off our Laundry....The Clothes Hamper ~ IS NOW OPEN!!
We are located on Green Bay Rd in Neenah in the Express building right in front of Pick n Save across the street from the old BIG Lots, and next door to HardeesWe have a variety of machines that can meet ALL of you needs!

It's handicap accessible. There is parking in both the front and rear of the building.

COME CHECK US OUT!!!!

***update Danny surgery is scheduled for Wednesday afternoon. Yahoo!!! **** I can only hope that the recovery is just a couple days and we are out of here by the weekend. Now wouldn't that be sweet!

On the Move

Danny was up around 2:30am but he was doing ok, not too crabby or anything just awake. Until all hell broke loose about 7:30am. He started crying inconsolably and was miserable. We went through his hourly amount of pain meds in no time so the doctor added on more, thankfully he calmed down and we didn't need to give the added amount before the PCA (pain pump) reset itself and we could start giving the hourly doses again. They tested his urine and there is significant blood shown which is a key indicator that the stone is on the move. UGH!! Tomorrow I will be standing strong to see if they can have Danny on the add on list for surgery to have this taken care of ASAP. Not too sure how getting him in tomorrow is going to work as the doctor was on vacation last week and probably busy, but I want lil man without pain as soon as possible!!
Today was trache change day (we have to do it once a week). The nurse pulled out and I put in. This time he coughed right before I was to put it in, after the nurse pulled out the other, and I freaked out....and I almost froze. The nurse was such a great coach and talked me through it and made me do it. PHEW ~ Thanks Mary! 2nd one under my belt :)

Outing

WOW what a day! This morning Danny started his day at 2am once again. *sigh* He was up spastic, tremoring, and feverish. This is all due to taking off all of the oral Baclofen Danny was on, they took it off as they felt he wasn't in withdrawal anymore so he shouldn't need it. Oh well, for now he does, so we added it back on and he has been dozing most of the afternoon, his fever went down, and he is comfortable.
My mom drove down to visit today and it never fails, HUGE blow out from Danny. My mom always brings out the best in my lil man. Two HUGE blow outs in two days, I can only hope that he feels better about that. I know I would, heehee
My girl friend came down today too and kidnapped me :) .. I left the hospital premises for the first time in over a month. I was very nice! We went to Red Lobster for lunch, went Shopping at Mayfair Mall, then ended with trying my first Getalo (Italian ice cream, mmmmmmmmm). How wonderful!!! Thanks Meghan for taking me out and Thanks Nanny for watching lil man.

Surprise Visits

Yesterday was a VERY low key and uneventful day. I sat around and dozed off watching tv most of the morning. Lil man is so sleeping now, most of the day and night now he sleeps. Talk about a different boy. It's amazing what happens when he gets all his routine meds, heehee. Danny's nurse Lisa (We LOVED her) kicked me out of the room for awhile yesterday so Kerri (baby Kolton's mom) and I took a walk across the street to The City Market, which is a lil pastry coffee shop. They had the cutest flower n butterfly cookies there....I couldn't resist buying a couple for Avrianna. Just as I was picking the right ones out for her....the phone rings. "Mom, where are you?" Here Dan and Avrianna did a surprise visit ~ That was so wonderful! I can't believe Avrianna held that secret in :)

I got an email from one of the nurses that are interested in helping me out with Danny when we get home. He is flying into Milwaukee from his vacation and wanted to stop by and meet us before he heads home. Unfortunately his vacation was cut short as his dad passed away yesterday my thoughts are with him and his family. How amazing his still wants to take time to meet us :) Guess I need to take a shower then today, Don't want to scare him off already, LOL.

I feel as if Danny is going well now.....he is still in pain but until the stone and stent are out I think Danny will be dealing with it. We are pretty much in a "holding pattern" right now as to when Danny can get into surgery again. They are going to do some looking into it today of when he can go back in. In a perfect world...I would like to see if Danny could get into surgery the beginning of the week next week, recover well without too many set backs, and then go home the end of next week to the beginning of the next. I'm shooting for 2 more weeks here. That way if we get out sooner I'll be pleasantly surprised but if we had to stay alil longer I won't be too devastated (but devastated I will be).

Here are some of the last pictures I am going to post on here, until the Parade of Homes is done, of the new house. Don't miss out...check out the house during the Parade of Homes starting August 15th. The home was built by Mike VanHoof from Custom Family Homes.

Danny's Custom built Firetruck changing table....made by Steve Lockhart and many part graciously donated by Pierce Truck employees

Avriann's bedroom underwater MuralLandscaping

One Month in CHOW

One month ago Danny was ambulanced down to Milwaukee like this........YIKES!This whole sickness started on June 11 so we've been dealing with hospitals since the 14th of June but it's been one month of us being down here in CHOW.

Today he's looking so darn GOOD! Yesterday Danny slept not only all through the night but ALL day too. I was alil nervous of what last night was in store for, but he slept till 5:30. Can't really ask for much there, Woo hoo! He continues to be in alot of discomfort and needing more pain meds then not, but at least we are in the hospital so we CAN give him the meds he so requires right now. I'm sure it has ALOT to do with the stent in his body. And when I say stent.....I mean STENT. I had thought it was alil mess inserted in the opening maybe about half the length of my pinkie, at best. Well after seeing the stent on the xray, HOLY CRAP. This thing curls in his bladder runs up his ureter and curls in his kidney. So a metal mess runs from the just above his peepee and stops about mid line of his left rib cage. It's HUGE!! I've heard from some that there is alil discomfort and I've heard from other that after 3 days it HAD to be taken out cuz it was SO PAINFUL. I guess with Danny's actions he is on the painful side, oh but of course. Again I'm just glad he is in here so he can get the pain meds at a high dose to help him out.

Yesterday my Dad and Laurie came to visit for awhile. I was a nice time! Glad they were able to come down and see us. Thanks guys! So I did have a moment when they were here..... Either I'm loosing my mind, too tired, or my MS is flaring, cuz I was playing cribbage with my dad (we ALWAYS do that) and I couldn't count properly. WTF! It was almost scary how dazed I was and how much Help I needed. I just about wanted to cry after they left. What the heck is wrong with me!!!

This morning I am already showered and have one cup of coffee under my belt. Lil man is not totally awake today either. So I think it's going to be one of those days again. Which is ok...he needs to catch up on his sleep and get better so we can BUST OUT OF HERE! I had to get protective of one of my primaries this morning. Common sense for consistency....a nurse whom had Danny for multiple days plus she down as Danny's primary, over a nurse whom had him for one day...which one would you chose? So glad the charge nurse is doing her job in rounds, NOT. I fixed it no worries, just the same old game new day with this place. I'm sure I stepped on someones toes, but we want consistency with lil man. Not that the nurse yesterday was good, it's just I want his primaries as much as possible.
Not sure what the "plan" is today, but for the most part we are sitting tight here until the kidney surgery. So it looks like a stay of 2-3 weeks more....sigh. But if we can get him in tip top shape, we can stay away longer!

Rest

So I've been posting alot of downers lately...sorry for that bloggies! I honestly don't like to be so negative n down, but being an "advocate" pretty much means stepping it up, LOL. I know I'm very Opinionated but being so negative isn't really my thing, I was starting to not like myself.
Well today is better, so far...............WE slept through the night last night! The first night in over a week Danny has slept past 2:30. It's amazing how wonderful you feel once we've woken up to a full nights of sleep. SMILE! That also shows how long I've been here (we got admitted her on June 26th so a month tomorrow) when I can have a good nights sleep on these couch/beds, LOL! It's A Good Day!!!! It's just a small step but as small as it is, I'll take it. He is definitely not a happy boy this morning so I'll have my work cut out for me today with trying to keep him comfortable but we BOTH have had a good nites sleep to aid in conquering today.
My dad is coming down to visit later today so I'll post later this evening on today's events.

Prevacid

Danny's Prevacid was added back today. I had them keep his feeds low without increasing them to add some of his meds back on orally. Unfortunately after about 25 minutes he started to wretch. To the point that we had major secretions coming out his trache, nose, and mouth. That required an SOS call out to the nurse for help...boy why can't I have more hands, LOL. So all meds are back on IV with the food staying where it was at. Maybe another day :( ..
I was able to have a chat with Patient Relations today and we had a nice conversation. Not too much to report so I guess it was a ok day. I am tired so it will be a early night tonight. Danny is still in discomfort and my heart just aches for him. I so wish I could take all the pain away and that I could find the actual source of the pain. I am doing my best at this hide n seek game with him. Thanks for all of your support!

Disappointment

So after yesterday excitement.....I figured I would have the night nurse print off another med sheet. Thinking that all my ranting and raving yesterday would have sparked an interest in them to do their jobs. Well once again................I was wrong. I'm emotionally and physically drained with this place. The lack of respect and cares is exhausting!! And they wonder why I don't feel SAFE to leave Danny alone in this room! I found his med sheet to still be missing meds. One of them being his Prevacid (Danny's antacid), where do they think it's ok to just removed meds? And ones that have significant results if not given! Lets see here...we are starting him back up on feeds (which he isn't doing to hot on), he is having tummy & gut issues, but no one else sees a problem with him not getting his Prevacid that he's been on, um ................. since Birth!! Seriously, where did they get their degrees here a cracker jack box? I am getting so sick of babysitting them here....and then they want to preach to me about getting nursing at home, when it's VERY evident that my level or standard of care FAR exceeds what he is given here and we are in an ICU people!! If they would like to pay for my "cheap" stay here and put my family up in a hotel so we can be together while they figure out how to become doctors...then maybe this would be ok? NOT!! How in he hell are we going to know what's wrong with him when they can't even keep his normal routine going? We HAVE to have him back to his routine before we can figure out to add or change something, right? Why am I the only one here that understands that.....AM I really dealing with Doctors here? Did they study?
It's now almost 6am and I've been up with lil man since 2:45.....so I'm sure all this stems from sleep deprivation, but am I that far off? Would this be tolerated if this was their child here? Am I over exaggerating? Danny got up at 2:45 and I changed his butt, suctioned him, vented him, repositioned him, rocked the bed and at about 5 he feel back asleep. PHEW! For the nurse to come by 20 minutes and slam the door shut, HOLY CRAP I just about came unglued. He now up for good! This ALL is too much to deal with. In the scheme of things...I was scared to death of a pick line n trache, but reality is out of all this they are a cake walk. Do I have a standard of care that is unobtainable? My lil man deserves better then what's been going on around here. I am going to be paging the hospital Patient Relations first thing this morning. I obviously am NOT getting anywhere being bitchy on the floor...well maybe that is why they are dicking up his routine (ok that is reaching, but I'm on a roll here). I am going to see what we NEED to do for my lil man and get him out of here and to possibly be transported back to Fox Valley to finish his recovery up there. Better care, more respect, more educated staff and closer to home. There are a hand full of nurses here that are awesome and have helped my lil man out so much...maybe they need to train the rest of them, LOL. Cause it's becoming so counter productive. I'm DONE with this place!! If Danny is too complicated for them I wish they would tell me instead of this.
To recap the 3.5 weeks here ~ don't have the time or effort to recap the lil things but......
1. Found Danny hunched over in bed with his face in the railings, bipap in his eyes crying when I came back from a 10-15min shower.
2. Nurse used a suction tip I specifically told her not too and ended up with lil man bitting down and his front tooth coming either when he bit down or pulled out again when I left to go get lunch. LOST first tooth out forever
3. Trache - woohoo, it's all good....ok NEVER thought I would be saying that, EVER! :) but they ended up having to pull out the other front tooth and I now have a second "first" tooth for my book
4. Big Seizure med Keppra, Prevacid, and 3 lil meds....were overlooked somewhere and he didn't get them for 5-6 days. WTF?
5. Some how the right hip that was just put surgically back in is now subluxed once again
6. The stent put in during the failed attempt to get the kidney stone out, is migrating down in the bladder. So will now have to be redone? Not sure as the doctor is on vacation this week and the others in his place don't want to play nice
7. Right ear tube that was put in when the trache was done had to be cleaned out and reinserted do to bloody discharge.
8. Danny got VRE
9. One very upset and pissed off Mommy!

Keppra

I gave Danny a bath today.....and look at the curls, heehee. WOW ~ he's had curls before but never all these tight ones. He's so handsome!!Peacefully sleeping :)Well after rounds this morning...everyone on this floor new I was pissed!! The restarted Danny's seizure meds and boy what a difference already in his mood and spasticity. I hope this gives lil man some relief. I can't believe that his wasn't getting his MAJOR seizure med for 5 days, and even more I can't believe that the doctors didn't see why I was making a big deal...Seriously,Really? Now he seems to be alil over sedated as his system is trying to readjust to his levels of back on Keppra, then the increase in the daludid, and the increase in oral Baclofen. I've aske to decrease back down the daludid and baclofen as I'm hoping Danny is getting back to his baseline, at least with the seizure stuff. What a day!! I talked with GI about his intolerance to the feeds yet and their feeling is to fix the stone problem which is probably aiding in his intolerance. Instead of changing the GI around, fix the stone issues, to change the GI around or back again. I totally agree with that....now just to get Urology on board. Dr Durkee is on vacation so of course they are trying to pass the buck till he get back to do the surgery. BUT I'm not cool with waiting 2 weeks till they can go in again to try. TRY being the key word here, as the last ultrasound has shown the stint that they put in to "stretch" his ureter to have slid already down somewhat in the bladder, UGH! Really ~ Seriously? Can ANYTHING go text book lately. We'll see if we get anywhere with Urology tomorrow.
Avrianna is going to a sleep over tonight and she was really excited when I talked with her. YIPPEE! I'm so glad she is having a good time and not too upset about Danny and I being gone for so long. I think I am doing worse then she is :( .....then she is going to hang out with my mom and aunt shopping tomorrow. Yea ~ that will be all bad....can we say SPOILED, LOL
Thanks again bloggies for following our journey....and what a long one this is! I so appreciate your kind words and encouragement. Some days I don't think I would be able to make it without you guys!

Heads are going to Roll

I'm so ungodly pissed off....just found out that Danny's BIG dog seizure med (Keppra) hasn't been given been given since Tuesday. When they changed back to IV meds it was overlooked. Guess I need to have the med report every day not every week. I'm SO PISSED #1 ~ I didn't catch it and #2 ~ that we are having another fuck up here. Not to mention I woke up to lil man having a fever and he's been up since 3am. BAD DAY!! I so can't wait for rounds this morning. I am hoping, but not hoping .... this is the cause of Danny's discomfort and weird actions for the last few days. I will keep you all posted!

With it being a weekend not too much to report...not too much gets done. So this is the face I've had to look at most of the weekend. NOT so much fun....AT ALL. We are increasing Danny's meds, but that's just a band aid to the problem. I'm so going to be in GO mode tomorrow to get a strong game plan together to find the source of all this and on resolving it. I'm not one to sit and throw meds at him to make him feel better without finding and fixing the problem. This face is KILLING me! Danny was able to start his trials on the HME (nose) this weekend. Which has been going smoothly. He is already up to 2.5 hours twice a day. We are working him up to being on the HME all day and on the extra humidity just during the night.

As you can see both calm pictures are of him sleeping........but I'll take it, as long as he isn't crying.

Dan and Avrianna came to visit again today....it's so nice to see them. I so can't wait to be out of here, enjoying the weather and enjoying being together as a family again. It's killing me to be away for so long. I wouldn't have it any other way, but I didn't sign up for this. With no end in sight, it can get frustrating. I miss them SO VERY MUCH!

We had a milestone today.....Dan pulled out his first trache and I put my first one in. Phew! It's full speed ahead from here with the trache now. YIPPEE!! I believe we might have found some nurses that are interested in home nursing for Danny. So when we are able to bust out of here that part of the process won't hold us up, I HOPE!

He is tolerating his feeds via g-tube but he's NO where close to the amount he requires. BUT he is getting food into his tummy and gut in hopes to kick start them to work properly. It's becoming a very slow process but a process that is in the works, WOOHOO. Ironically we've had to start up his babylax to get him to poo again, of course Danny lets throw another issue on the table. He was having approx 6 HUGE blow outs a day when we came in and is down to nothing for the last 3 days. Could that be the cause of his discomfort, Yeap. Could it be the stent they put in, YEAP. Could it be the stone in his kidney, Yeap. Could it be the once again subluxed right hip, Yeap. Could it be the dysautonomia, Yeap. My head is spinning!!!!!!!!

Getting somewhere

Well once again Danny has been up burning the midnight oil...he was up at 2:30am. Ok seriously, this is getting old! They gave him, on top of his diladid drip, 2 prn doses which didn't touch him at all. Finally the doctors started giving him oral baclofen, on top of his baclofen pump, which that seemed to do the trick. Danny fell asleep from 10 - 3.....so it was a very quiet afternoon. I watched a couple of movies and just relaxed. It was nice! Once he was up I did trache cares, bathed him, and we changed his bedding. That was all the excitement...yeah I know REAL exciting! I could definitely tell when the baclofen was wearing off as he was getting very agitated again so we gave him his night dose alil early and again it seems to be doing the trick. I can only hope that we've found the much needed relief for Danny to relax and help him recover. It has been a LONG road and I really would like to start the path to the home stretch. We did start his feeds back up slowly, this morning, with the new formula again, Peptimen Jr, and that too so far is working. Keep your fingers crossed that his gut tolerates the feeding and starts back up again. I'm sure we'll start to see the effects by tomorrow. I really don't want to go home on TPN/lipids if I don't have too, and the sooner he starts to tolerate feedings the better. I got the final test results from this weeks test on Danny's VRE bug.....it's still positive, ugh. Which means still in isolation. They need 3 weeks in a row of negatives to get out of isolation, even if we were to go home we still need to have the test done on Danny to get the 3 weeks in a row or if he comes back in they will automatically put him in isolation till they get 3 negatives. So a whole lot of nothing today, but we like boring....boring it good.
I'm pretty bummed as tomorrow is my 16yr class reunion. Ya~ leave it to my class to do it a year late, LOVE IT! I was really looking forward to meeting up with everyone once again. It's been forever, and since my new addiction to facebook (thanks again ~ Connie) I've been chit chatting with some classmates so I would love to see them. Well have fun guys, I hope the weather is great, and know that I will be thinking of you.
Thanks for everyone that has been sending your warm wishes to my family, cards, balloons, and gifts. It is very thoughtful ~ thanks again.

Avrianna and Dan came to visit us today....it was WONDERFUL to have them here. I miss them SO MUCH! Avrianna had a surprise waiting for her from child life here on the floor......her puppy who of course is trached, LOL. It was so cute every time we would have to suction Danny she would get her supplies out and suction her puppy, Mia. One of Avrianna's favorite pass times, laying in bed with her brother watching TV.Danny has been up since 4 this morning back to his spastic and tremoring ways....UGH. That continued till about 11 and then he got a PCA pump. I couldn't stand see him like that any longer! So now his is getting a continuous drip of Dilaudid to hopefully aid in keeping him more comfortable all the time then these highs n lows over n over. It seemed to have taken the edge off today, so I can only hope that this works until we can get/find the cause of his discomfort. The other option is these episodes are related to a dysautonomia condition. That has been set off due to all the medical issues and procedures Danny has gone through in the last month. Which after reading up on it more.....alot of it make sense as to the gut and spasticity issues going on all of sudden. NEVER EVER a dull moment, right? LOL

Dan was able to do his training today when he was here with the trache cares on Danny. He cleaned the stoma area, did trache tie changes, did most of the suctioning, and watched as I pulled out my first trache doing the trache change. WHEW ~ First one under my belt, now I just have to put one in. Dan and I both had to be trained on the new home equipment Danny will need once he's able to go home and then we had an updated CPR training for a child with a trache. We are getting closer and closer to being able to go home, now we just have to whip Danny into shape, LOL.

Here are some pictures of the new house...as you can see it is coming along very nicely. Talk about another stresser on our list of NEVER ENDING DULL moments in our life, but seeing the pictures ......WOW and it's not even completed yet! ** Remember the house in the VBHA Parade of Homes with Custom Family Homes by Mike VanHoof ~ starting August 15th so stop on by to see the all finishing details & the handicap accessibility of our home.
Here are some bits n pieces of the place ~

Danny's room....with some of the lifting systems
Custom made shower lounge for lil man

Mstr Bath cabinets

Avrianna's bathKitchen

The Great RoomFront garage view

The Front

The Back