Today Danny got out of bed and into his wheelchair for a lil while when he was on his bipap break. He did pretty well~ Way to go lil man! It's ALWAYS nice to see him up and out of bed

This morning's visitor....BIRDIE! Thanks for coming to visitAngel Face Today I got the results back from the sleep study.....I was right! Machine vs Danny isn't compatible as the bipap isn't picking up his shallow breaths and will give him puff when his is breathing on his own. Resulting in him fighting the bipap....UGH! So with that being the last piece of the puzzle we are going to sit down with the majority of his specialists in a Care Conference and discuss the doing the Trach. If that is what he needs then Trach it is. Maybe just maybe someone in the Conference will have an idea, so we'll have to see how it goes. The next few days with being a Holiday and a Weekend I don't have to worry about making any BIG decisions right away, so it will be a very low key few days. WHEW!

Dan drove the RV up North to be with Avrianna for the BIG North for the Fourth festivities. I so miss you deeply!!!! I haven't see her in over a week and the phone calls just don't cut it! I'm used to being with her all the time too and I'm so sad that it's another holiday without us being together. She is having a blast shopping, playing , and entertaining at Papa's house which makes it alil better, but I wish I could just hold my lil girl. That would make me feel like things are alright. We still need to sit down with her and let her know what's going on with her brother and with me. So far we've sheltered her with the details about all this.

I met a very nice mom while down here and we've hit it off. So we've been doing lil coffee clutches, stopping at each others rooms, and doing ice cream runs. It's so nice to be able to unload, vent, and chat with someone. She's as spunky as me, LOL and we have alot of similarities. How cool to find a new friendship out of all of this craziness. Well we're off for ice cream!

Another Move

We are in ANOTHER ROOM now, room #513 direct line (414)337-8133. Our last move!

Ok this is getting alil ridiculous....two moves in 24 hours, well actually 3 if you count the move down to the sleep lab last night. I'm so glad that sleep study is over with and I can't wait to see what the results are. I haven't heard anything as of yet, but I didn't really anticipate I would hear something today either.

Danny did have some issues this morning when we came back to ICU after sleep lab with wretching. I went to vent him to find out that ALL the meds that we gave him at 8pm last night were still sitting in his tummy this morning at 8am..UGH! His tummy stopped working and is in some state of paralysis. The GI doctor stated it could take weeks, month, year, or never for kiddos to get their tummies back, ok that sums it up, LOL. So Danny went down this afternoon and had a pick line implanted in his right arm. A pick line is a glorified IV that runs (in Danny's instance) in his arm, up the arm, and down into the heart. He did time a seizure just right...they treated him diastat, just before we left for IR. So no added drugs to make him sleepy, diastat works great. Now that he has a pick line the labs can't come around poking him all the time, :). They started TPN and lipids.....along with stool replacment, yeap can't believe that. one. As he is pooping too much so they are trying to repalce he needs.

Unfortunately they had to put it right where his arm bends, so I hope it's good for a long time and doesn't get pinched off.We (as Dan came to visit today) were able to finally talk to Dr Beste, the ENT doc, and he statement was that he has run out of trick to pull out of his bag for Danny. It's been a long road and we've done everything to get get even this far. So he really thinks the TRACH is the next step for Danny, but..........he would like to see/hear about the sleep study first. ME TOO :) I am hoping that tomorrow we get the sleep study results. We were back in isolation once again today, but then taken off late tonight....they wanted another C Diff test so they were waiting negative results (which they were again).

Well heading to bed....VERY TIRED ~ NITE! Sorry will update more tomorrow

Moving

Just a quick update.....last night we had a sleep study, spare of the moment thing. So I was able to update. Then we moved into a new room today....Danny is now in rm#520 direct line is (414) 337-8140. I will post more when they do rounds this morning
Yesterday we were able to get an MRI done and we didn the sleep study last night. So I'm hoping to have more answers then questioni today. I will keep you in the loop later

July 1st ~ WOW!

Trying to "UP" ourselves out of here, LOLBright Eyed, but not so bushy tailedOk seriously where did June go? This illness started on June 11 and we are no further today then we were then.....unfortunately worse off in some situations. Whatever bug that Danny got to start the spiral downward effect had impacted his lil body with serious consequences. And the ongoing question of when are we going home....time will tell and Danny is the boss. My gut says at least another week for the soonest and if he should need a trach then Lord knows when we break out of here. We have to more tests ~ another MRI and a sleep study that we need to do with lil man and they will give us our definitive answers of trach or no trach, as I'm not going to make that call till we know for sure. This new illness kicked his butt, and triggered alot of issues with lil man.

We stopped all feeds once again, as his diarrhea isn't getting any better and he is still wretchy. It's been going on for about 14 days now and that's not good. He isn't processing his meds well either so they are considering trying to convert what they can to IV instead of oral and/or putting in a GJ tube (feeding tube that bypasses the stomach and goes into the intestines) till his stomach is better. The doctor says it's like his stomach is paralyzed and isn't doing it's job. So no food for awhile once again.

He really has a hard time recovering from all of the respiratory treatments. He gets so stressed out and pissed off that he collapses his airway more and then we see the "seizure like" activity do to irritation and aggravation. So it's a check 20 here damned if you do and damned if you don't Again he needs more bipap time, but is still tolerating an hour here and there being off it. Which is a PLUS. Got to look at the pluses too :) We are still waiting for ENT to stop by and look at him. With the hope they have some tricks up their sleeves to dodge the trach, keep your fingers crossed.

The Care of Plan for Danny is in play and submitted to see what he qualifies for Private Duty at home nursing. Of course if we go home on a trach that changes the game significantly! But for right now we are processing everything as if he will be going home with normal Danny activity, LOL. Now the hardest part.....................finding a Nurse!

Danny started inpatient PT yesterday and seemed to tolerate that well. They are going to work on him 3x a week. YAY ~ Keep him loose! Now that we are not in isolation they are going to put Danny on the Pet therapy list so when there is one on the floor he can have 4 legged visitors stop by.

He is out like a light right now. It's been a VERY busy morning. The xray people came in a 4:30am, ARE YOU KIDDING ME (second morning in a row)~ and he's been up ever since. Then RT came in for breathing & vest treatment treatment, he wretched his morning meds, filled his pants, I gave him a bath, changed his bedding......so now is a good time for a nap. I might take advantage of the down time myself.

Sorry I didn't up date yesterday but had some visitors and then was just wiped out! My mom and aunt stopped by in the afternoon and then my girlfriend stopped by in the evening. It was so nice to see fresh new faces :)

Down Day

I was so anticipating a better flowing day. I guess that's what I get when I assume, LOL. My hope was that the consults that were ordered for Danny's specialist would have happened in some part of today.
We were able to get GI to stop by...and the thought of the nasty diarrhea is it's due to the antibiotics (which I already knew) as it started just after we started ALL of them. The doctor did state you can get many false negatives for C Diff and with the length of his diarrhea he ordered to start the treatment just in case. Which could be causing discomfort and cramping not to mention a red butt. This could be one reason for the spastic reaction (seizure like activity), thanks Dr Miranda.
Urology stopped by between his surgeries to just check in on lil man and voice his opinion with the kidney stone/pain issues which we both feel wouldn't be causing these episodes either, but his is thinking about ordering a Xray, to ward off all evil, and see if the 4mm stone Danny has started to drop. Which is painful but wouldn't be as intermittent as these episodes have been. I'm glad he is willing to "prove" this option out though, thanks Dr. D. I'm amazed at how the powers at be like to pass the buck but don't want to help find the pieces of the puzzle so it always a nice change of pace when there is a team player around.
But that was about it from my list of 7 specialist that I had thought I would have seen today. Palliative Care stopped in the morning and we paged them in the afternoon but they didn't reply or stop back, UGH! I saw Rehab last night and he was going to go over the CT scan that was done yesterday and the MRI disk that from when he had it done about a month ago, Rehab also must have been busy as he didn't show up today either. I was told the hospitalist put orders in for ENT, Dietitian, and PT but they to did not show up. I still haven't been able to talk to Danny's Pulm doctor either. So the key players in this admission I still haven't been able to talk to see what they think and put a game plan in place, SO FRUSTRATING! I'm trying to figure how much more serious do you have to get then being ambulance over cuz you're not breathing do we need to be before we can talk to our doctors that really KNOW Danny. Guess there's Priorities that I'm unaware of.
Danny had another lil episode, again while he was sleeping, of apnea brady and sat drop.....this time we were able to get him to snap out of it on his own, but obviously it shows that something still isn't right. Again prioritizing here, right? I am waiting to hear from the hospitalist on tonight as the nurse, RT and myself are NOT happy with his heart rate at 130 at sleep and his sats with the bipap and o's dipping at 84 . I think it's going to be a LONG NIGHT!!! Dr Kasper called this evening after his last "episode" and he isn't impressed either with the lack of communication & game plan.
They are in now trying to deep suction and then their switching him back to the hospital bipap as it has a better flow, I guess, then our home model. I was hoping for a better night seeing our day didn't go too hot. Hopefully the hospital bipap works....looks like we might be taking a couple steps back, but we all know Danny likes to do things in HIS time so..........who knows!
I'm doing ok, I know alot of you are very concerned about me and my recent DX ontop of all of the Danny stuff right now, but really I'm OK. I was prepared for the dx of MS so it really wasn't any BIG surprise to me. It's going to be an adjustment in my lifestyle once again, but if you know me at all.....I'm not MS, I just have it. I've learned from our journey's that you need to go with the flow, don't get me wrong I have and will continue to have my days, but for the most part what good would it do me or my family if I decided disconnect and be depressed all the time. Would that change things, no......I want to enjoy my life, even with the hand I was dealt, it's my hand and I'm play the cards the best way I know how. I have a family that needs me and I will be there for them to the best of my ability forever and always. I will be starting my treatments once all of this commotion slows down with lil man, he IS my priority right now. I am having a new symptom the last couple days....my right leg feels as if it's in warm water all the time, warm and tingly. It doesn't hurt just a very weird feeling.
Cross your fingers for a more low key evening. Good night ~ and thanks for checking in on us.

Roller Coaster Day!

Missing something???? Yeap ~ Danny was off all his machines for awhile today. YIPPEE!!!! Here he was chilln out watching SpongeBob Square Pants with his froggie. *SMILE*

HI !

Can you tell he was SO HAPPY to be off his bipap for awhile? And no flushed face, yay! This morning he woke up smiling, happy, and chattering to his nurse Paul......My boy was BACK! It was a great sight to see and hear. Then respiratory came in and said we can try him off his bipap here and there for awhile. He did great!! He was off longer then we thought he would and for the most part tolerated it well. He still works harder and sounds better when off the bipap, but it was a nice change of pace to give his nose a break. After his night nurse suctioned him out he did SO MUCH better. Thanks Katie!!!! :) Now he is sleeping sound, but has a higher heart rate then normal with dips in his sats and a flushed face.....so not too sure what's in store this evening. I wonder if he was just off the bipap too long today and now he is working alil harder then normal? I hope tonight is uneventful!

We did have a few episodes that were seizure like today ..... we are doing some more investigating while we are here to find out what this episodes are and why they are happening. We are going to get some of his specialist doctors together tomorrow and brain storm. Wish us luck, LOL.

I hope you liked the pictures !! Thanks for all your kind words and support. Stop by and sign our guestbook or post a comment to let us know you were here. We love to hear from you too!

Cool EEG

Today had been pretty eventful.....Last night he was spiking a fever, well a fever for him. As Danny tends to be a cooler boy, his normal is 94-95. So NOW his is going the other way, and is 92.5. They are all stumped! As you can see his face is still flushed, but the rest of him is cool?? Danny can you ever do anything noramlly? LOL The doctors have been notified and are consulting as we speak if we should be more concerned as everything in the last 24 hours have NOT been Danny "normal".He had a long term EEG started this morning, in hopes to capture his new seizures and give them alil more insight to his brain activity. I know the Neuro's here were going to call down to get the images and report of the MRI Danny just had done so they could take a look at them. Maybe they will find something in there to do with his temp differences, with Danny you NEVER KNOW, heehee. Here he is all bundled up in blankets in hopes to heat his body up with his dreadlocked wire holding cap on. He was NOT impressed having this done again. SO here's our Nurse today....he totally got the short end of the stick and was stuck with Danny and I. WE LOVE HIM....hands down one of the best nurses (ok maybe the best for us) in CHOW! Thanks ~ for caring for my lil man and making our stay alil easier. YOU'RE THE BEST, Paul ~ "Seriously you didn't just take my picture". I'm trying to convince him to come up north and do nursing. But he isn't budging.

Extubated!!!!

Danny got to surprise Daddy this morning when he came to visit us and bring me some clean clothes n snackies. He was cleared for having any influenza of any kind and RSV ~ and they pulled the tube out before he got here too so, even though it looks like he is hooked up to everything known to man he isn't hook up to the vent at this time.Now we are back on Bipap but at a much higher rate then he is normally on and O's. I'm so happy the tube is out...he fought it for a long time this morning. I finally said either you sedate him or you pull it out! They elected to pull it out, YAHOO! He seems to be doing really well so far. His throat is pretty scratchy n soar but I think he appreciates it being out too. They are for the most part just letting him be today and just relax. He is very cold today...with his temps only about 92-93, Danny normally is low but he is getting lower then I care for him to be. Here he is chill'n out with his Bipap watching the TV (yeap he has his own tv!)The BIGGEST concern with Danny now is will he stop breathing again and how/if his brain has been impacted. They did a short EEG this morning and the neurologist here were in contact with Danny's Neuro up North ...they decided to do a long term EEG now to see what's going on with lil man which I think might get started tomorrow or Sunday. And they are monitoring his kidney functions too, just in case. I'm not planning on getting out of here any time soon!
Well here is the new suites on Peds ICU....they are HUGE! Unfortunately after being in it for a day I've found how dysfunctional they are. So sad....it definitely has the wow factor but after really looking at it and being in the suites, I'm so disappointed. I'm truly convinced a man designed them with no real family input and is trying to over compensate for something. Cuz they have ALOT of things in the room that are not needed and lacking ALOT of things the ARE needed and very important things at that. So VERY disappointed in the new and "improved" set up.Just behind Danny's bed in the "lighted area" is........my home away from home *sigh*

This morning I did get a phone call from Dr Price my Neurologist.....I do in deed have MS. Now onto the treatment stage. Of course with me being in Milwaukee right now with Danny my issues will sit on the back burner...for now.

Avrianna was with my sister today hanging out in the boat in the wonderful weather. I'm so jealous. She is going to hang out with Dan tomorrow and then Papa n Nana (Dan's dad) are going to spoil her rotten for a few days. Avrianna is going to have a blast.....the worst part of all this is going to get her back into reality, LOL. I'm so glad she isn't aware of the severity of Danny's illness as I'm sure she would be totally traumatized.

Danny stopped breathing!

Very bad news to report! Danny during his nap late this afternoon decided to stop breathing ~ CODE BLUE....words a mother really never wants to hear, but I've heard my share *sigh* He went into respiratory FAILURE. We are unsure of why this all happened, but I thank my lucky stars it did happen in the hospital and not at home. UGH! My mom stopped up because I was actually going to go out to dinner with Dan and Avrianna, stop at home to get new clothes, and get the van so I had my own wheels to drive to my appt tomorrow morning to go over the results and treatment options on me with the Neurologist....NOT GOING TO HAPPEN ~ CODE BLUE. Holy Crap do people come running from every direction and into this little room. I was able to get Avrianna out of the room and in the child life room to play before anything really happened so she is not aware of the severity of all this, and didn't see Danny intubated. I am thankful that there was a volunteer on the floor to keep her occupied and distracted so she wasn't traumatized with all this....but my mom might need some therapy after this, LOL

Danny was intubated around 6pm and we were transported down the CHOW in Milwaukee via ambulance. We got up to the floor right around 12:30 in the morning. It's 3 am they are still not done with him and I couldn't sleep if I wanted to. When will this nightmare END! He is comfortable right now, which is a HUGE as the first 3 hours of intubation have been complete HELL. He was fighting the tube and VERY irritable, I can't blame him for that one.

Get this one.....I was just informed that I can not leave the room! We are in isolation.....until the cultures come back for swine flu and some other tests ~ I can NOT leave the room. Ok ~ they don't have showers in each room, they have a shower area by the parent lounge...I can't go. I can't go to the cafeteria to get food as I can not be near the public. I wasn't able to go home to get new clothes so all I have is clothes that need to be washed with me....again not able to leave the room. With this isolation and the with the scare of swine flu we can't have any visitors. Oh yeah I can't use my cell phone either ~ Can you tell how impressed I am with this place already. NOT! Danny is in room W524 in the ICU the direct line to the room is 414-337-8144. You can try my phone and leave a message, but again I can't leave the room so I won't be able to return your call till I can leave the area. Other then the size of the new rooms here I'm NOT impressed, not at all. I feel terrible as our friends The Prindle's are here to....she stopped by to say hi and see how Danny is doing...instead of NOT letting her in, they did and now they are in the same protocol that we are in....They can't leave their room either ~ I am so Sorry Brenda, I wish they would have told us they were going to do that :(

Woohoo it's 3:30 and they are FINALLY done with him and going to leave him alone for a few hours. I am going to try and close my eyes for awhile till the doctors start coming by in the morning. Thanks for following us! I will keep you posted

I'm Here Bloggies!!

Sorry for the lack of updates, but I'm back on my game (I think, LOL) and I'll try to get you all up to speed. We are still up on the 4th floor of Children's Hospital Fox Valley. Danny is still very dependent of his Bipap, but we were able to get him off it twice today for about 1.5 hours each time, WAY TO GO lil man. We started to feed him very very slowly which he seems to be tolerating with the slow rate and anti nausea meds on board. He does have a major gut problem today. His stools have turned into water, he is having many dirty diapers, and his stomach is bloated today. With the extended tummy comes added discomfort, he eyes are red and have been tearing all day, Danny is flaring his legs around at times and whining too, which just breaks my heart to see. They ran another C Diff test today and that too came back negative, but that's for now, LOL. So we pretty much sit and wait to see how Danny does....Danny recovers only on his time and we know all to well what happens when we try and rush him. Like Dr Kasper said today..."Danny has just fallen off the wagon and it will take us some time to get him back on it". Unfortunately he seems to be taken longer and longer to recover with each illness. I know the hospitalist called down to CHOW to talk with Pulm, dietitian, and GI for some advise and ..... wait for it.......they didn't call her back, UGH! Well I see they treat "their" own just as they would me, so I'm hoping they will call back by tomorrow. They are concerned with the lack of Danny's protein in his diet the "puffy" look he has to him so they are consulting with the dietitian to see if we need to add a protein supplement to his diet.
After having the blood patch on Monday I was feeling much better. I was a mess to say the least. I was so disappointed with myself on how awful I was feeling and how useless I was. I was VERY VERY scared with what the future has in store for me and my family when the start of this journey wasn't starting off so well. I still have a dull headache and my back is feeling soar, but why wouldn't it when I've had 2 needles stuck in it, LOL. The Neurologist doctors office called this morning and my lumbar puncture and labs have come back abnormal. So I am going in Friday morning to go over the results with the doc. I'm not sure what abnormal means.... abnormal but normal for MS or is it something totally different. Time will tell and I will have my answers Friday morning.
I have taken this down time in the hospital to start to put together a Care Plan....pretty much a very detailed document of Danny....everything and anything that is envolved with him. I've gotten alot finished but I know there is more that needs to be put down in black n white. I'm sure once we get a nurse in and go through all of Danny's stuff there will be something that I've forgotten to put down. I am finding alot of dead ends in looking for a nurse to come and help me out with Danny, but I will NOT give up. It's another experience I can only hope that things will be worth it in the end and get easier once we find a nurse that will fit in with us.
I have been totally out of the loop with the progress on the house so nothing really to report there.

Hospital

Danny was readmitted back up in Children's Fox Valley Hospital this morning. We were up at 1:45am dealing with breathing issues and tons of wretching. I called Dr Kasper and he wanted us to go in.....I put Danny in the shower quick and we were off. With the early hours and me running around I think I over did it.....and I ended up in ER after I got Danny siduated on the floor to get a blood patch done. I was SO disappointed with how terrible I felt and how useless I felt. My headache is starting to go away and I hope I can be more useful soon. Danny has been a good boy since on the floor, so I'm feeling like such a putz bringing him in. We still have yet to start any feeds so we'll see how that goes tomorrow. He gagged and wretched through last nights meds and this morning meds I hope tonights goes well. Well that's all for now....I feel aweful still so going to turn in. Thanks for checking in on us.

Lumbar Puncture

Well I had my LP this afternoon...boy that's an experience I hope not to have again. Then afterwards I had to have a bunch of blood work done, WOW talk about a work up! The LP went well, after having two natural births not much can top them. It felt as if I was in back labor... alot of painful cramps in my lower back. A part of me was glad I got to experience it as it's a procedure that Danny had done and now I know what he went through. For that I feel extremely bad for lil man, I can't believe he wasn't sedated. I should have the results back as soon as Monday but probably by Wednesday. Now I'm reclined in the couch hanging low in hopes to NOT get the LP headache which I hear is worse then the LP. My back is alil soar but I'm more uncomfortable sitting around doing nothing then anything. I'm not good at sitting around watching others do things. Well it's raining so what a better day then any to have a movie day.

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

Up in the Air

Not too sure what is in store for Lil Man as of yet for today. He had an ok night, started to get a fever this morning, and had some wretching issues during RT treatments this morning. BUT..... he has been off the bipap and on 2 liters of Oxygen for the last 15 minutes and doing well. So there are some ups and downs already with today. I've seen Dr Natalie walk through breifly this morning so we'll see what she has to say when she rounds.....WE LOVE HER!!!! She used to be in Dr Kasper's office before coming here to the hospital so we would see her once in awhile. She is a wonderful doctor......she understands, gets, and isn't afraid of Danny......if we are to get out of here she will be the one to get it done.
We got some visitors here yesterday too. Danny's BFF Griffin came up and it was so cute...it was like Danny and Grif were chatting (just like their moms) together, one would coo and then wait for the other. It only last a few moments, so obviously their stamina isn't as good as their mothers. His room is filling up with cards and balloons. THANKS EVERYONE!! They put alil cheer in the room, not like I'm not enough to brighten up a room or anything, LOL, but Danny loves looking at all the new stuff.
Well need to get going as I have my Neuro appt in an hour....so got to get going. Lil man is going to hold down the room for me, he will make sure the nurses stay on their toes I'm sure of it. I'll post again soon.

NO GO!

Well after the doctor came in to say we could go home.....they called down to Milwaukee to Danny's Pulm doctor to let her know the game plan. She wasn't excited about sending Danny home when he is SO dependent on the bipap. So we are NOT GOING HOME....I'm so sad and really bummed. This is normal for us so I don't see what the BIG deal is. Danny has pneumonia and is having troubles breathing.....no doubt he is going to need some help the next few days maybe even weeks, so I don't get it. He does GREAT if on the bipap, but every time he is taken off he struggles VERY HARD and so far today we were only able to get him off it for 30 minutes and that's with 2 liters of oxygen to "hopefully" help, but NO GO! So we are here for at least another 24 hours to see how he can do, which at the moment is great, if their goal is going home off the bipap. ***SIGH***
The nursing care thing is becoming a PAIN IN THE ASS to get paperwork started, approved, find a nurse, and all from the comforts of the hospital. There really isn't an agency in our area so I would have to go with a private nurse, which is fine......but wow it's overwhelming and right now I just feel lost. Almost to the point where is it all worth it.....it's just easier to do it myself? This is a HUGE step for me and right now I'm just feeling I'm getting no help trying to find help, if that makes any sense. Or am I just making a mountain out of all this cuz my head is spinning around?
On a good note....or a bad, not sure how to look at it, but.......NeuroScience called today and the doctor wanted to see me tomorrow at 12 noon. So I guess I'm getting in sooner? Wonder what all changed, but a part of me really doesn't want to know.
Avrianna is LOVING all her camps that started this week. I am glad she has them as her outlet and break from all our craziness lately. Dan is running around here, there, and everywhere, but welcome to my world (as I always say).
I will keep you posted with ALL that is happening with us. Thanks for stopping by....and let us know you were here, we love hearing from you too!

Going Home!

We are GOING HOME!!!! YIPEEE ~ HORRAY ~ WOOHOO. Still has pnuemonia but he can do his cares at home. Xrays look better and no o's over night. Not sure exactly when we are breaking out of here. Need to do paperwork, see when the air mattress will be delivered, and see how to start up home nursing. BIG steps for us, but will be work out in the end, I hope. Wish us LUCK! I will post again when I get home or if anything changes

No Machines

Danny was off ALL his breathing machines for about an hour and a half this afternoon, YIPPEE!! Then he started to struggle and dip his stats down, so he is back on....but he was off for a while. He looks like he is in the right direction. I guess the antibiotics are doing their job breaking down the bacteria. I can only HOPE that this continues!! Today he got a bath and a new mattress too =) It is so cool....it's an air support mattress, the hospital and the rep are in the works in getting Danny one for at home.
Today we got a visit from our good friends (Jaime and Sarah). Thanks for coming guys it was so nice to chit chat with you. Breaks up the day and it ALWAYS nice to see you. I also got a nice visit this morning from one of the nurses up here that has been diagnosised with what they think I may have. I was great to hear some of the things she is going or has gone through....as you all know me, I like to be in the know.
Well Avrianna is back up here so I better get going. We are going to play a mean game of Monopoly, wish me LUCK, LOL

I was just about to post how stable Danny has been today. Not any better....but not any worse, then I realized his stats are starting to drop while on bipap and oxygen. So we have increased the oxygen liters once again. Danny has started 2 IV antibiotics, an inhalation antibiotic, he gets Mr Jiggles 4x a day, slow drip continuous feed, and now the cough assist machine is back (still not doing anything , but it's back). They have tried to take the bipap and/or the oxygen at times throughout the day and he didn't do too hot without them. I'm sure he isn't going to turn around JUST because we are in the hospital...he's going to take some time to start to get better. Poor thing =( I see Danny is suppose to have follow up appts in Milwaukee for ENT, Pulm, and Endo on Thursday......guess I will be on the phone tomorrow to reschedule as that isn't going to happen.
I was able to get my cell phone back up and running today, Yay. So you can now call me on my cell again.
Avrianna starts all of her camps this week......so Dan is being Mr Mom and getting her ready and running her around this week. She came up to visit us for awhile today, but she ended up spending most of her time in the play room, LOL. Avrianna had a nice time and that's all that matters.
I am taking advantage of the hospital stay and getting alot of information from the nurses in regards to getting respite care in the home to help me out with lil man. I made a "flier" and put it up in the nurses break rooms to see if anyone is interested here in respite with helping me with Danny.
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Pneumonia!!!

Danny's chest xray this morning is not good. The right lobe is all gunk! So it looks like we are going to be here for awhile. He has a FULL BLOWN aspirated pneumonia....and because he has this pseudemonas bacteria in his throat it is likely that it too has found a home in his lung. NOT GOOD, NOT GOOD at all. They are calling down to CHOW to talk to Danny's Pulm. doc to get a game plan. This pseudemonas really makes this pneumonia tricky and more complicated. AUGH! Not a great way to start off the summer. I can only hope this is not the trend for the rest of the season....Danny had one of the worst summers last year, I so do not want a repeat. He is miserable! Danny spiked a fever last night, is extremely wretchy, and that's on top of him struggling to breathe.....I can hear Dr D'Andrea now and I'm sure the trach is going to be brought up once again. *SIGH* BIG *SIGH*
Avrianna is coming up later to hang out with us....we are going to make some signs to post around to hospital and see if any of the nurses here are interested in some respite a few hours a week. If YOU know anyone please send them our contact information, thanks!
My new iphone froze today too, so that doesn't work...when it rains it pours. So I won't get your call if you call my cell...the direct line to his room #413 is 920-969-7958.

ER ~ Admitted

My sick lil man....I took Danny into ER today to get some chest xrays. He was laboring his breathing so I figured was better get a picture of what his lungs are looking like. On his bipap and 5 liters of Oxygen he was holding his stats 85-92, not impressive, and tugging hard at each breath. He is still very congested and the doctor said his throat was still red! The doctors came in and stated that his chest xray was ok, and his blood work looked good to....so we were going to go home and ride out the storm. If he should get worse just call and they will direct admit him to the floor. The respiratory therapist came in to suction him before we left...didn't listen to me, and now Danny is paying the price. I told her I use a 8 maybe 10 size cath to suction him and she used a 14. Which totally aggravated him and he started to CRY and then obstruct.....the Doc come back in and said no way was he leaving obstructing. Which then caused him t get even more congested.
Doesn't this just break your heart! Seriously this ER sucks....they tend to make things worse then better. I'm so disappointed ONCE AGAIN! Danny is going to be ONLY direct admit coming back to Children's Fox Valley....cause going to ER ISN'T going to happend.
So then another suction treatment...but by a different RT, she over aggravated his esophagus and he started to bleed, then choke, and which caused his stats to drop to 77-80 for about an hour. That bought him a ticket straight to the floor. He now is admitted and in room #413. SIGH He is sleeping right now. He deserves a good sleep! Poor thing was working really hard this afternoon to just breathe. Unfortunately his numbers are not impressive still....sleeping with the bipap and 5 liters of oxygen (normal without oxygen).... his heart rate now is 160 (normal at sleep 45-60), respiratory rate 45 (normal 30), and stats are 92 (normal 97-100). Well while he is sleeping I should catch some ZZZZZ too. Well see what tonight and tomorrow brings. I'll keep you posted