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.
Thanks for following us and your kind words of support. Please sign our guestbook or comment after the post....we like to hear from you too !

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

Lang Wedding

I was able to make the wedding after all. WHEW!! I was worried....I didn't want to miss Tim and Amanda's BIG day. Tim is Dan's best friend, hell more like a brother to Dan. He's been through alot with us and I was becoming very concerned that I wasn't going to make it. Lil man was up to his games this morning. Dropping his stats and becoming congested....I pulled out ALL my bag of tricks ~ hooked him up to every machine we have here in the house, gave him multiple Mr Jiggles treatment, called Dr Kasper and even did some breathing treatments. He stabled out within a couple of hours, where being on the Bipap and 3 liters of Oxygen at least was getting him to 92. My mom was brave enough to stay and watch him so off I went, 1.5 hours away. I DIDN'T want to miss this wedding, but my son was pulling on some SERIOUS heart strings. The last of the "group" to get married, Dan's best friend, and someone who is near and dear to my heart. I MADE it, YAHOO!!! I called home MANY times and lil man was behaving himself (for the most part) with Nanny. There wasn't too much he could do with all his machines hooked up to him as he stayed on them all day.

This is what he looked like when I left... do you see him "chewing" me out, LOLNanny VERY nervous, but watched him like a HAWKHere are some of the pictures that I took! It was such a beautiful day for a wedding. Best wishes Tim and Amanda! I am so excited that Tim found a wonderful woman to share his life with. She is AWESOME and they compliment each other wonderfully. Avrianna was disappointed that she couldn't come, but I told her I would tell Uncle Tim that he now has a date with her in a rematch of Wii bowling, heehee

Make a Smilebox slideshow

Today ~ this weekend ~ has shown me that I can't do it on my own. I NEED someone around to help me out with Danny and learn all of Danny's lil things. Someone I can rely & count on and someone that isn't afraid of all that Danny entails. So we are going to start looking at getting help at least once a week to start the next step in the cares for Danny. I'm not all sure how this all works, but next week I'm going to REALLY be looking into this more. Any tips are greatly appreciated. Even though it was nice to get out.....that wasn't fun, not knowing how things were going, wondering if things were really going ok. I NEED to know that when he is like this someone KNOWS him and cancare for him. I'm sure there are going to be instances like this again in our life times and I don't want to have this helpless feeling again. Danny was good for Nanny todayand Avrianna was a great helper, THANK GOODNESS.I got a phone call about 45 minutes away from the house that he was having another seizure, UGH! I swear this boy KNOWS more then given credit of sometimes. It's like he knew I was coming home so ..... let's stir the pot alil bit. BOYZ ~ Got to love them! This seizure was smaller and only lasted about 10 minutes, no rescue meds were needed for this one.
I was doubley exited today....I OT TICKETS! Avrianna and I are going to go see Hannah Montana in October for her tour in Milwaukee WI. Now I'm just debating on if we should get a hotel and spend the night there. The concert doesn't start till 7 so not sure if I want to drive 1.5 hours home after a Hannah concert.

Tough Love

I had to have a REAL heart to heart with myself yesterday. It was another on of those days that you wish you could go back to bed and start the day OVER.
First business was the second hamster was VERY sick .... so much for thinking these things were good pets. *SIGH* We ended up taking it back to the pet store yesterday afternoon and they thought it had "wet tail". They didn't think it was going to recover as it was in bad shape so we got another (an FINAL) hamster, Avrianna named this one Bugzy. This is going to be our last attempt at having a hamster....3 in 3 weeks. UGH! What a lesson I'm teaching her....don't worry something dies we'll replace it, I thought about that one and was just sick to my stomach, it terrible.
Then as I was getting ready to start the day yesterday......Avrianna came into the my bath room, while I was in the shower, to tell me Danny is "freaking" her out. WHAT!!!!! So I run out of the shower and yeap he is in a seizure, poor thing. This one lasted approx 20 minutes so I had to give him his rescue med, Diastat. He was WIPED after that, plus the Diastat knocks you out too. He didn't pee on his own yesterday either....I'm sure due to the heavy doses of muscle relaxer/Valium he got. This all is stemming from the change in his seizure meds so I was expecting some break through seizures, but honestly not this much or this intense so early in the game. SIGH. It will be better once this Topamax is out of his system.....BAD TOPAMAX!!
Avrianna was suppose to go to the dentist for a cleaning yesterday morning so needless to say the seizure Danny had canceled that. We were to leave in about 30 minutes after I finally got it the seizure to stop and I couldn't take the chance of lil man going into another one while driving on the road. Avrianna wasn't too upset about bumping her appt, LOL.
As I watch my lil man tremmer it was a HUGE slap in the face.......I don't even leave him alone (AT ALL) in a hospital full of fully trained personell, why in HELL would I leave him with my Mom. Someone that hasn't even watched him more then a couple hand full of times for just a couple hours here n there and doesn't have the slightest clue on what to do if something goes on. Not to knock my Mom, I love her dearly, but just being my mom doesn't give her a free pass. So plans have changed this weekend. I will be going up to the wedding part & dinner and then coming back the same night. So I will at least be getting "Out" for a few hours. My mom will be here to still watch the kids, she is going to stay the night tonight and start getting familiarized with Danny so if I should run into this again we BOTH will be more comfortable. I'm sorry but a one hour crash course on Danny just isn't enough for me to leave him alone with her....not even with a trained nurse it's not enough time.

Craziness

Monday was Danny's last PT session for his summer session...I know summer just started, right? Well because MA has been a pain in my back side in approving the sessions they can not see him till they get word it's ok from MA. Mind you I started this process back in MAY, thinking I wouldn't run into this problem. So needless to say I'm NOT a happy Momma! The system just sucks!! I can only hope they get their CRAP together and GET IT DONE so my lil guy can get his PT. I am highly considering looking into private therapies in the home so I'm going to do my homework and start investigating what's all out there.
Monday my in laws came down Papa n Nana to hang out with us. They got a tour of the Laundry Mat and the new house and then they came over to have dinner (take out Chinese, yum) and a slumber party. I stayed up way past my bed time chit chatting girl talk with Claudia, it was GREAT! Then yesterday the kids and I kidnapped Claudia, we met up with my Mom and Aunt Bonnie, and we SHOPPED till we dropped. I went and got my hair cut to start off the morning and then we were off. We all had a great time and the bargains ~ The full size van was FULL! 8 FULL hours of shopping ~ we had spent so much time out that they needed to stay one more night, heehee. They were up and off heading back up North early this morning. THANKS Papa n Nana we LOVED having you guys over ~ WE MUST do that more often. MISS YOU ALREADY
While we were shopping lil Ms Avrianna started to get a soar throat and lil man just wasn't his self (crying and didn't seem comfortable at times). This morning Avrianna still had a soar throat, I checked it out the it was very RED. So I called Dr Kasper's office to have her looked at today. I was able to make an appt in the morning so it was alil crazy around here trying to get us all ready and showered before we went in. As I was giving lil man a shower he was still "off" and then all of a sudden ~ SEIZURE! God I hate them even more when he's wet...timing is so bad :( He came out of it after 7 minutes but I called back to Dr Kasper's office to see if he could see Danny too just in case these two are SHARING something. Avrianna does indeed have a soar red throat with a low grade fever but no strep. Whew! I need to watch her to make sure she doesn't spike a fever or go yellow (jaundice) as with her not having a spleen things could turn south VERY quickly. The verdict with Danny is ...... he's just Danny. LOL! Ok, I'll explain that one......We are changing his seizure meds around and seeing there is no physical reasons for Danny to have crying bouts or prompt a seizure. That we are thinking it's the change in meds. Danny doesn't do well with change, he tends to make a mountain out of a mole hill. With changing the meds he could be "confused" or feeling different and that's the only way he knows how to voice his differences. Again this is NOT a definite but that's the theory we're going with on him right now. Got to love the seek n find game with a non verbal child....you KNOW something is wrong now figure it out, sigh. While Dr Kasper was checking out his ears he was pulling out some wax that was in the way to seeing the ear drum.......the wax ended up being the ear tube. So now no tube in the left ear.....got to see my first tube, LOL. Dr Kasper went over some of the images with me on Danny's brain MRI.....WOW ~ Danny you ROCK and my HERO!
Bailey (our family dog) had to go into the vet today too....I know, right? She had to have her bi annual labs done to check out the level of Lyme's disease in her system, we should have the results back in about 2 weeks.. Yeap she's got Lyme's and Allergies.....laugh with me NOT at me, LOL. While we were there we got her nails trimmed, she's so NOT a fan of that.
This morning I got a phone call from NeuroScience and the Nurse Practitioner that was to see me on the 22nd isn't available on that day any more....WHAT? So we had to bump my appt back even more to continue the diagnosis of what's up with me. *SIGH* A part of me is ok with that and then there is a part of me that is........I have soars and masses in my brain and cervical spine how long should I be putting this off? The diagnosis process is so much different when it comes to me then with the kids. I can always go into ER if I should have a change in my symptoms or if I get new ones (like I know what that would be when I don't even know what the heck I have). Funny how they will see you RIGHT AWAY when you are having a stroke or something but trying to pinpoint what, when, or how they will put it off for months. The system SUCKS!
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With some help from Ms Aaryn and leg immobilizers Danny was standing up today. Now with him not being in the stander to give him the height I was able to SEE how tall my LIL man is. Avrianna is just about a hold head taller then Danny. She's my sprout!!Yay ~ Good Job standing Danny!Checking out the view from the 6th floor ~ Doesn't he look GREAT. Yeap ~ Avrianna has to be around to help him out ALWAYS, he's stuck with her FOREVER, LOL

Love his eyes......seriously Mom you're NOT going to help me out here?

Dr Kasper called this morning and as we wean Danny off of Topamax for his seizure we are going to add back Tripletal. Danny was on this med once before, but he has issues with maintaining his sodium levels on it. But I would rather have to add sodium to his diet then have to deal with stones on an on going basis. It's the lesser of two evils :( The doctors feel that Danny won't do well just dropping one of the seizure meds so we have to replace it maintaining his seizure meds to 3 meds, UGH! We'll have to go in more for labs to watch his sodium levels, but I'd rather do that then surgery from painful kidney stones all the time.

Dan's Dad, Papa and Claudia are due to be here soon. Avrianna is so excited she is going to be able to hang out with them for a few days. I'm sure we'll have to get some shopping done while they are here as it's still raining a cold here, what better to do then.....SHOP.

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We're doing WHAT?

Rain, Rain Go AWAY!!!!! I know Wisconsin is known to be cooler, but this weather is CRAZY! The kids and I are ready to pack our bags and head down to Florida till August, maybe it will be at least 60 here in Wisconsin by then, LOL! What a weird season Spring 2009 is ~ Bring out the winter coats n mittens *sigh*
Danny is a NEW boy ~ and all it took was a bath last night. I soaked him in a Vix bubble bath and he turned around, just like that! YIPPEE, if he didn't want to go to the Make-A-Wish Birthday party I can think of a few other alternatives then the game he played yesterday, YIKES! Just shows how fast things change around here.
I'm so excited I got ALL of Avrianna's 2nd grade books ordered yesterday. I can't wait for them to come in. I spent a good part of the day yesterday putzing on the computer (as Avrianna would say) finding new "used" books and I SAVED a bundle ~ YAHOO! I think Avrianna and I are going to start doing a family tree for a project. Avrianna seems to be interested in who's who and I think she'll enjoy learning more about who and where we came from.
A BIG milestone for ME is going to happen this weekend........I am going away without the kids for 2 full days and 2 nights. Dan's best friend, Tim is getting married to Amanda, up North in Wausau. I'm very apprehensive about this step, but willing to give it a try. I'm not worried about Avrianna as I know she will have fun with her Nanny, and I think my niece & nephew are coming along to help Nanny, LOL. I'm sure Avrianna will be right by Nanny's side to make sure she does everything right with her brother, but I've NEVER left lil man over night with someone else in his whole 5.5yrs..........well I don't know how to think. I know I have to get over it, it will be OK, and have fun. Things change so fast with him and he tends to be on the extreme side so I'm just afraid he's going to freak his Nanny out....she's alil over reactive too, LOL. I LOVE my MOM dearly, but NO ONE is trained in watching him for at length periods of time especially over night. It's not that I don't trust her.......I don't trust Danny. Then the more I think about it the more I'm kind of disappointed that NO ONE is prepared to help me out with lil man, he is 5.5yrs old and NO ONE has shown interest in getting to REALLY KNOW my lil man. Sure I get the if I can help out all the time, but no one has ever followed through to learn so I can use them. It's not like I can say here he is.....I'll be back later. I will only be about 1.5 hours away so if things should start to go hay wire I can be home relatively soon. We are bringing the RV to camp out & towing the mini van to cruise around town with while we are up there so if I have to bug out early Dan isn't stranded up there. He's in the wedding so he wouldn't be able to leave. I'm looking forward to having a nice weekend, so I'm thinking positive =)
Today was my first experience with Sam's Club. Mental note......Never go there again on Sunday! Wow ~ what a NUT house! From what I saw I think I can do some serious shopping there, but NOT today. We just got a few things we were looking at getting for the Laundry. Yeap, we not ONLY are building a new home, but we started a new Business too a Coin Operated Laundry in Neenah (The Clothes Hamper). I keep joking Dan.....not like getting all the high divorce factors out there at once (special needs children, Homeschooling, building a new home, starting a new business, and now health issues with me), LOL. I believe the ET of the laundry mat opening is in a couple weeks....I'll keep you posted.

Wet Day

Well this morning Danny was "off" when I was getting him dressed for the day. I had him sit in his floor sitter for awhile, but he started to breath very fast (about 60 reps per minute) and tugging hard for each breath(check out the red face). His stats weren't impressive either 85-88 so that bought him a ticket to the Bi-pap all day.

I walked away for maybe 3 minutes tops to find Mr Bubbles.....he is getting wetter and wetter as the day go on. Even with the Bi-pap on he holds steady stats around 92....it should be higher on the bi-pap.
Dan stayed home with lil man while I took Avrianna to the Make-A-Wish 25th Birthday Party. We didn't stay long...just enough time to drop off our gift bad donations, eat a burger & some cake. Then we took off....we didn't stay for the Timber Rattler Game! It's WET...It has been raining all day and it's ONLY 45 degrees. Are you kidding me? Where's this Global Warming I keep hearing about? Ok maybe we will stay in Florida till July next season! Here are some picture of the celebration ~ they had the cast from Star Wars there.....Yeap both were COLD
They had a cake contest too so there was alot of cakes there. Even the Star Wars guy participated in the cake cutting. Guess which cake Avrianna has a piece from.....it was as close as I could get her to the guy, she wasn't impressed with the dudes in the armor and Darth Vader...not a chance of me getting her close to him, LOL. I've never seen her so skiddish before.She likes R2D2 though, heehee

Danny results- 2nd post

Forgot to add the News with Danny. On Wednesday I brought Danny in for this rash, well while there we also sent in a throat culture cuz his throat looked red and a urine culture. The rash by the way has disappeared, BUT his face continues to turn into a tomatoe off and on throughout the day, weird I know. Then the throat.....he tested negative for strep BUT the culture grew Psuedomonas (which is a bacteria that grows where there is moisture). Because Danny has crappy Pulmonary Toileting (I love saying that) also known as not being able to clear airway and lungs with secretions, it must have made a home in his throat. UGH Danny has had this particular bacteria in his right ear do to his chronic ear infections, but I believe it's alot more involved now that it is in his throat. UGH again! We are going to watch it for now until we talk with the ENT.... if Danny should have respiratory issues or a bad odor coming from his mouth then we'll see about tackling this right away. Then onto the urine......his urine is way high in levels of calcium and PH. Which is another reason for this "stone" in his kidney....which is maybe an underlying issue with Danny but is agitated with one of his seizure meds (Topamax) and another med(By-Cytra 2) that counter acts a side effect of the seizure med ... Did you get all that? So long story short, we are taking out the extra Calcuim supplement for now and we are starting the wean off of Topamax (he's on three different seizure meds) and By-Cytra 2 to see how Danny does. Cross you fingers the seizures STAY WAY!!!!!!! Like we have enough on our plate right now......right? I will keep you posted on that too....read earlier post to get more details on ME :)

Results

First off...the top topic ME *sigh*. I'm alright bloggies! I know alot of you are worried, but honestly it really hasn't effected me. I think maybe when there is a definite diagnosis it might hit me briefly but right now I'm not acting or feeling any different. It's another thing on my list of to do things...it is what it is and we'll deal with whatever comes our way. I'm alil disappointed as the Neurologist appt (if I want it with the doctor) wouldn't be until the end of July so I'm going to stay on with the Practitioner but that appt isn't till the end of June. I hope nothing serious happens within that time frame. There have been many could be's so far, but not limited too: MS (multiple sclerosis), ADEM (Acute Disseminated Encphalomyelitis), CNVS (Central Nervous System Vasulitis), and some form of demylantion condition as the "insulation" around my nerves in my spine have started to deteriorate. They are lead to these option as they have found lesions (soars) in my brain and cervical spine (my thorastic spine looks good at this point). WHEW! So there is alot more testing to find out why and what this really is. I've heard a lumbar puncture is my next faze. Weird way to look at it is....I'm going through alot of the same experiences that Danny has already, NEAT ~ how many Mom's out there can say that! I look at my son and say "What do I have to complain about, if I end up in a chair?" What I have won't define me or who I am....it might take away some of my abilities but if you know me....that won't stop me! My worst fear (I try hard not to go there lately) is that I won't have the ability to care for my kids.....that would be devasting news! It's not the ability I'm worried about loosing...it's my cognition or my life for that matter. I have two kids that really need their mom, hell I really need them! Well know you all know what I know....which isn't alot but just enough to get you thinking. Thanks again for your support!

Today we went out to the new house....the tile is going in and so is the ceiling lift. I'm so excited! I love seeing the look of the house come together. You see just a small sample of what thing will look like and you really never know what it will LOOK like when it's put in.

The kitchen floorI can't wait to see how this lift works......I hope it helps make Danny's daily cares easier!We also went over to take a look at the changing tables that are being made locally by Steve Lockhart (Enable Design). OMG ~ the fire truck table is going to ROCK! Tuesday the kids and I got to see the head busts of the kids that I am having made locally too by (Tim Brunn) and I am in awe, speechless (I know, I can't beleive it myself). From there we went to see the stain glass (Coventry Glass) that is completed and ready to be installed in the house. It's been a VERY LONG haul and I'm so glad the house if finally coming together =)

Here is Danny hanging around at his last therapy session. Trying to see what he will do on all fours. He did great....we just need to get a bigger and better brace, this one is too small.

This is what happens when you lend over to pick something up on the ground and the cap off of Danny's formula pops open, heehee. She smelled like formula and was so sticky....we had to give her a bath after that, poor Bailey LOL

Today I am going to order Avrianna's 2nd grade school books.....WOW does time fly. I am so glad I get to have this opportunity with her.....priceless time that I will never get back. LOVE you GIRL!! She is doing so well ~ she has excessed all of my expectations.

Tomorrow we have a get together for the 25th birthday celebration for Make-A-Wish at the Timber Rattler Stadium and then we get to watch a game. So exciting.....please pray the rain holds out!!! I will post pictures tomorrow.

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MRI Update

Not too much to report but the doctor called me tonight at 9pm (that's never good) to let me know the MRI with contrast still shows abnormalities in my brain and cervical spine.  So she is going to call the Neurologist tomorrow and her office will call me in the morning with an appt time.  I had an appt at the end of the month with the Practitioner but my doctor would like me to get in sooner and with the a Neurologist.  That's all I have to report...not much except more tests in my near future to pin point what is wrong.  I will keep you posted.  Thank you for your support and being there along this new journey with me.  SIGH :(

Progressing

Avrianna so VERY PROUD that she can FINALLY ride her "new" bike.  We've had this bike for over 1.5 years in the basement (yeah Daddy was thinking big, LOL), so after that long of just being able to look at it ..... LET'S RIDE BABY!

Here is a video of lil man working with his digital switch this afternoon.  He is doing so well with it.  WAY TO GO DANNY!

Make a Smilebox slideshow

Avrianna and I are so excited that this year we have a GREEN THUMB.  All the pants that we potted and replanted are still alive, WOOHOO.  The new hamster is still kicking too, thank goodness, LOL.

I took Danny into see Dr Kasper yesterday as the "sun burn" I though he had on his face would mysteriously fade out and pop back throughout the day.  I guess something blew or got on his face this weekend that isn't agreeing with his sensitive skin and his has dermatise (sp) so he has a blistery rash on his face.  I have to put cream on it twice a day, poor thing.

Last night I had my MRI with contrast....it went well and only lasted about 1.5 hours.  Mental note do not cross you legs when you have to not move for 1.5hours....legs and feet fall asleep fast and you can't do anything about it, LOL.  Now the sit and wait game for the results.  I will keep you posted.  I hope to hear something by tomorrow, but not sure. I'm on the doctors time now, heehee.

Planting and Replacing

Danny has a VERY red face....it looks almost as if he is sun burned (if he was in the sun then that would be an option) and on his chin is a blister that is seeping. Not sure what has brought this on or what it is, but I think I'm going to be bringing him in to have it checked out. One moment I think it's getting better and then a few minutes later the blister seems to be popped out more and his face starts to get red again. NEVER A DULL MOMENT!
Sunday I went to the store and got a bunch of potting flowers to give the outside alil more color. I haven't done potted plants before so this was an experience. Avrianna and I had a blast putting together a few pots. Then I got a hibiscus (thinking of you Linda). I always wanted one of these and I thought it was cool as this one has two different colored flowers on it.Ok from this angle it doesn't look like much but it took us all day to rearrange and replant. We are trying to make the outside have more "curb appeal" for when we officially put it up for sale. Give it a few weeks and it should start shaping up :)

It was a very sad afternoon here on Sunday........only after having her for 3 days, Rhino passed away. Avrianna was devastated! So we had to to run her back to the pet store for her to be replaced, ugh

Bye Rhino you will be missed!And HELLO Mittens....Mittens is a dwarf hamster. Again leave it to Avrianna to pick the smallest one in the bunch. Boy I hope this one hangs around longer then the last.We also had to put her hair up in the "maze" to make her feel better.....she was just crushed that Rhino died :( Sobbed and tears the whole way into the pet store. I think the people in the store knew exactly why we were coming in....sobbing lil girl with a hamster ball.

Tomorrow I am having another MRI done. This time it is with contrast, in hopes to make the abnormalities stand out better, and they are capturing a larger area. This procedure is going to take about 2 hours this time.....the last one was only 45 minutes. UGH ~ Two hours in a very lil tunnel and you can't move...two hours of clicking and banging. What if I have to pee ~ LOL. I will keep you all posted...see never ask "What else" as with our family there is ALWAYS a "What else" right around the corner! ***sigh*** Really when will the health issues STOP!