Monday, June 29, 2009
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.
Sunday, June 28, 2009
Saturday, June 27, 2009
Friday, June 26, 2009
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 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.
Wednesday, June 24, 2009
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.
Monday, June 22, 2009
Friday, June 19, 2009
Thursday, June 18, 2009
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.
Wednesday, June 17, 2009
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!
Tuesday, June 16, 2009
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
Monday, June 15, 2009
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 !
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.
Sunday, June 14, 2009
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
Saturday, June 13, 2009
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
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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.
Friday, June 12, 2009
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.
Wednesday, June 10, 2009
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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Monday, June 8, 2009
Sunday, June 7, 2009
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.
Saturday, June 6, 2009
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
Friday, June 5, 2009
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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Thursday, June 4, 2009
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Tuesday, June 2, 2009
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 :)
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!