Set Back

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

In OR

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

Surgery

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

Surgery Today!

I gave lil man a bath and hair cut...so he's the coolest best smelling boy on the floor, LOL. Not the easiest task to give a hair cut with the bandage scissors they have here, but I did I pretty good job if I do say so myself.
Well I don't know too much more at this point.....only update as of now is ~ the procedure is going to be MID afternoon today, as we are an add on, time will tell when the opening will present itself. Once again the only hiccup in the surgery is Danny's ability to clot. They increased his vitamin K but it didn't help too much. The doctors aren't too concerned but Danny's Hemo doctor will be advised this morning. I will keep you posted as I know things!

School Days

Today Danny had his last day of Speech for the school year.....I can't believe that next year my lil man is going to be in Kindergarten.  He got to show off the new proximity switch that he is going to use over the summer.  I am SO EXCITED with the results already!  Danny is showing off his stuff with this new switch, I believe this is FINALLY the one, YIPPEE.  Now it's up to me to find the most consistent spot to put it, but in just one afternoon I've found two VERY CONSISTENT areas where Danny activated his toy.  I even have Ms Maria and Mr Scott as witnesses so I have proof, heehee, I'm not just a nut job mom who thinks her son is doing it, LOL.  Danny sat up in his floor sitter chair for over on hour, engaged in play time (aka therapy time) the whole time and didn't shut down once.  This is good news....watch out you therapists, next year he is going to be a whole new boy with this new switch, more positioning tools, new computer software for him and a new house to spread his wings :)

We also discussed the IEP that we had last Thursday.  I think it went VERY well!  Everyone is playing together to make a team effort in what it best for Danny, I believe we had 15 people at the meeting.  I'm so blessed to have a wonderful team that wants to help me maintain a qualify of life for my lil man.   Next year as I said he will be a Kindergartner, but he still will be home bound with his therapies.  I just don't feel it's worth the risk of him getting sick.  Danny gets sick so easy and then it's so hard for him to recover with hopes that he hasn't lost any of what he has gained.  Plus the one on one he gets at home with us I believe is better for him then being in a class full of kids which most have alot more abilities then Danny.  I don't see it being fair, healthy, or functional to Danny being in the classroom all the time.  I did say that I would love to bring him into the classroom (when the chances of him getting sick aren't so high) when they are having something special going on or during music class and we would love to tag along on some of the field trips.  That way both Danny and the other kids can interact together.  Unfortunately the school district we will be in at the new house won't be able to accommodate Danny's needs so he will be registered within a different district.  I know for sure he will have a new teacher for the school year (a kindergarten teacher that will be doing home bound education), but the therapist ie: Speech, OT, and PT I'm not sure if they will stay the same.  I hope so ~ but will be prepared for new ones if they need to change.  I can't wait for next year....I have all these great things to use and try over the summer, plus being in the new house next year.......well SKY is the limit for Danny and Avrianna for that matter.  

Avrianna was feeling much better around 5pm yesterday.  Thanks goodness!  I was really getting worried, as she wasn't keeping anything down ~ not even ice chips.  I called nurse direct and they said if she continued to not keep anything down for over 8 hours to bring her into ER and have her checked out.  Good thing she started to turn around by 5 cuz that was her deadline.  Today she is back to herself again :)  We are wrapping up her 1st grade school year also.  Then onto 2nd grade in a couple weeks....WOOHOO!!

I scheduled Danny's cystoscope (scoped surgery for his mass that they found in his left kidney) for July 6th.  He will be admitted for 23 hours afterwards for the minimum.  Of course I made a date with just my husband and I to go see Sugarland in concert on July 8th so something tells me, Danny might put a wrench in my plans it ALWAYS happens like this.  Oh well!!   I hope to hear back from Danny's MRI next week sometime from his Neurologist.  Dr Kasper is going to order a copy of the images on disk so we can see them too :)

This week we are finally going to get started with PT at the hospital for summer therapy (someone was sick every time he was scheduled the last few weeks) and then Danny has one last OT session this week for the school and she will be done for summer too.

Please don't forget to pledge your donations and sponsor us in The Big Foot walk it's this Saturday May 30th.  Click on the box to the left. 

Thanks for checking in on us ~  Please leave a comment or sign our guestbook, we'd love to hear from you too :)

Comedy & Anxiety

Last night the kids and I went out to eat with our neighbor and my grandparents and had a great meal. I was stuffed! We went home and I had all good intentions of going to bed early as I needed to be up and out the door by 7am this morning to get my grandparents to the airport. But.........Danny has other ideas, heehee. As I was putting the kids to bed at quarter to 9 last night Danny finally decided to poop, YAY!! So as I was lifting his legs to change his diaper he let'r loose and pee'd all over himself. uck! First issue was he was peeing without a diaper.....Second he pee'd in his face so it was everywhere on him....and Third he decided to start to choke (so obviously it went down his nose or in his throat, YUCK!). So once the extreme crisis of choking was over with (god I hope this isn't an aspiration) I then stripped him, the bedding, gave him a bath, washed the wedge, and then used the blow dryer to dry it (thanks Bonnie), and made the bed again. Then I started to freak out as reality hit he had pee on his face.....is that ok?........do I need to do anything other than soap?.......Will it give him an infection (as it was in his eyes, nose, mouth, ears, hair.....yeap he did a VERY good job, way to go buddy!) I washed his face again before I put him to bed and brushed his teeth twice, LOL. Danny was so tired after all that he fell asleep in the shower and didn't wake up even when I was getting him ready for bed, (again) or when I was setting him up to his machines and he always wakes up when I put the Bipap on him if only for just a lil while. Boy what we'll do for a good time around here :) Avrianna was such a GREAT helper....she jumped out of her bed (they sleep in the same room here) and was grabbing a cover for him and helped me strip his bed, I am so proud of her! She is such a GREAT big sis to her brother.
Once things settled down and the kids were all tucked into bed Avrianna started to cry about the surgery. She is starting to freak out but is trying to hold herself together cuz she knows her brother is going to have surgery too. What a trooper! Looking back through all her episodes, crisis', and treatments she has been awake and aware of everything. She felt and remembers EVERYTHING, so trying to tell her she won't feel or remember this is not sinking in for her. I feel just awful, but know in the end (with no spleen and gall bladder) she WILL have a better quality of life. I see her fear, I hear her fear, and it's killing me. Not only for her but for Danny.....this is a real slap in the face when he can't say or do anything and after 13 surgeries I've never had this crying fear with him....he just goes with the flow and in this respect I wish he could be scared......Know what I mean? With seeing what a "typical" child goes through I can only imagine the resentment he feels after 13 surgeries. I feel awful!!!!!! Not to mention I feel differently with this surgery experience.......This is Avrianna's first surgery and I'M FREAKING OUT....now does that make any sense I've been through how many of these. I am scared to death! But once it's over then she is good to go and the recovery should be a walk in the park compared to some of her crisis' recoveries. Then with Danny I'm not afraid of the surgery so much (maybe cuz it seems so routine, I know that's terrible too) but with the recovery I'M SCARED TO DEATH! I don't want to hurt him or see him miserable for that long. The unknown of recovery time 6 weeks or 12 weeks and the unknown of will it be a brace (please pray it is as with his sensitive skin I know he will have SEVERE skin breakdown with the other alternative) or in a cast which will make his and my life alot more miserable. How do I carry my lil man without hurting him, How will he do with a brace/cast for that long, Will the ITB pump be ok as one of the incisions will be right on top of where his "puck" is and will it cause an internal infection? My head is spinning, I get knots in my throat, and I have a pit in my gutt. Yeap I'm a wreck about this. I can't wait till it's all over!!!!!!!!!!!!
I've decided this year NOT to have a birthday party for my lil man and I feel terrible. I've always had a BIG birthday bash for him but this year I think will be too much for him. He will be the BIG 5 on December 23rd and with his big day being less than 2 weeks after surgery I'm not sure he or I will be ready for a party. I'll definitely have a celebration for him but will lay low with just us. I'm actually considering NO Christmas either. Just sitting home opening our gifts of course but then no going from house to house just us by the fire place and sitting in our jammies! It will be different but I might like different!
Today Danny has PT at Kid Spirit and Danny was pooped out or uninterested as he slept through pretty much the whole Session. Ms Becky still stretched him out, heehee so no worries. I did do some smiling after on the ride home but didn't make it too far and was sleeping once again. So it wasn't you Ms Becky, LOL!!!! Now if I could only get him to sleep through the nights again. I miss sleep! I was spoiled as he would sleep from 10-7 now I'm lucky if I get him to sleep till 4, sigh.
Well Take care and have a SAFE and HAPPY THANKSGIVING!
**Please remember if you'd like to participate in Danny's Christmas scrapbook.....send me a picture of yourself/family and a message I can attached with it to Danny. Then I can read and show him how many people have been TOUCHED BY DANNY'S LIFE!

Another Day

Well sleep seems to be few and far between for my lil man, sigh! He is getting up around 2-4 every morning now with these "reflux" episodes, argh! Along with having them during his day feedings. He has also started just recently becoming more "wet". He is blowing bubbles out of his mouth more and has even started to drool here and there. I just hope that he doesn't have any aspirations do the the increase secretions and possible reflux. So I'm not too sure what to do. He hasn't had a bowel movement in 3 days either....I've given him enema's once every day but no go, literally, just air and a spot, maybe. So again stumped!!
Today I got a phone call from Milwaukee (and no not from the doctor...go figure) but they managed to make my schedule work for them....that's a surprise. They must REALLY want Danny's hip surgery done. I'm still not sure about this consult as he has NEVER had one before and Avrianna isn't required the have one.....so believe me I will be going in half heartily and they had better not WASTE my time with a 5 minute appt, or I am NOT going to be a happy momma. So I will be swinging into the hospital on our way home from Florida Monday the 8th at 8:30 am .... hope they have enough room for the RV, heehee.
Therapy on the other hand has been going VERY well. I am really excited with the "angle" that they are all going with in regards to Danny's education. It really is an education down here not just playtime/therapy. I am just amazed in the last week what all the therapist are doing down here to help me help Danny learn to communicate. And he is doing so WELL with it.... my lil boy is just stuck in a body that won't allow him to do the things he wants. He is so inquisitive with all the new things that have been brought out and shows consistentcy in such a short time of bring it out. WOW! Did I say how PROUD of my lil man I am.
Today PT came out this afternoon for his first
PT eval from the school district down here and she was so nice....they structure the therapy so differently here then in WI. Each therapist here comes out to aid in the teachers ability to teach him properly instead of coming out and doing therapy. I am so happy that Danny is getting "The best of both worlds". He comes down here and they have given us SO MUCH to help in Danny's communication and then we go home and he gets "therapies". Seeing both ways I really am loving it as what one doesn't do the other does and he will have all advantages of being all he can be! Well I know it was a VERY rough road to get Danny "going" with the therapies down here but in the last week they have totally redeemed themselves and have just WOW'D me. Yay Danny!
This morning Danny had Speech here while Avrianna went to Grandma's to do an art project making reindeer out of dog treats. Tomorrow is Grandma & Grandpa's last day here so I know Avrianna is going to miss riding her bike over there for a change of pace around here. Avrianna and Danny did hand print turkeys today for an art project here and they both had a fun time. I even got Danny to smile while doing it :) Now if I could just get him to corporate for a painted hand print, NOT! Then we were off to the pool for an afternoon dip.
Again for anyone interested in participating in Danny's Christmas present. I am making him a scrapbook of family, friends, followers, therapist, docs ect that I can read to him over and over to show him how many lives he has touched in so many ways TOUCHED BY DANNY'S LIFE ......... so if you'd like to be added to his book PLEASE forward me a picture of you and or your family with a special message that you would like me to add to it. Please email them to me or email me and I will get you my address if you'd prefer snail mail. Thanks!! Take care

Disney on Ice -- 3rd post of the day!!

Ok this is the last one of the day....promise!! :) Well the Disney on Ice show was GREAT! We all had a wonderful time. Mental note: (senior moment here, heehee) Don't wear sandals to an ice show! I am freezing!! I'm going to drink coffee and eat soup for the rest of the day to warm up. DAHHHHHH. We were in the front row (which is ON the ice, so that didn't help with the cold feet) and it was amazing. Some of the characters stopped by to shake Avrianna's hand and to touch Danny. I was great, but it happend all so fast so I wasn't able to catch it when they stopped...I do have a few of their back sides as they were leaving, though. Here are some pictures enjoy!! The ones with just me Avrianna did, maybe she'll be a photographer cuz she did a great job. See....
Here we are just before Here we are waiting for it to startSee how close we are!

Don't LAUGH!!! I wasn't ready
He doesn't like the hat either!! Some of the show :)

Little Mermaid

Lion King

Mickey and the Gang

Lilo N Stitch

Peter Pan

Do you think they had FUN?

Hope you enjoyed them!

Forgot to mention one of my stresses yesterday! I got a call from Milwaukee on Danny's surgery. The doctor wants Danny to have a consult with anesthesia before surgery and the ONLY time they could get him in is the 1st of Dec. Well that would require me to come home early not to mention drive myself and the kids home without Dan, NOT! They could squeeze Danny in on the 11th (day before) but it was at 2:30 and Danny's IEP at home is at 1 so wouldn't be able to make that time either (canceling his IEP and letting it expire is not an option). The scheduler mentioned that Dr Tassone WANTS this done, so with me and my meekness I stated to her that Danny has had around 10 surgeries there and if they can't find the notes and/or an anesthesiologist (I gave her 2 names whom worked with Danny in the past) that is familiar with Danny then I guess it isn't going to get done. I told her to have the Doc call me on Monday and we'll chat about it. I understand the whole theory about Danny and being prepared going under....but don't you think it's kind of weird how Danny has had MULTIPLE surgeries there and Avrianna hasn't had any, and she isn't required to have a consult with anesthesia. This could get ugly :(

Surgery Change

Ok another spare of the moment thing, I'm know for that! Both surgeries are now scheduled for December 12th at 7:30am. It actually works out better this way for everyone, except lil man is going to be in his brace/cast for his 5th Birthday and Christmas. I'm hoping I don't have to change schedules again but for now the official word it the 12th. I will keep you posted with that!
Sorry another short post but the adoption social worker will be here shortly so need to get going.

UGH!

Well yet another thing to add to the Osero family plate. The dog! Her lymes disease is acting up again so Bailey is back on her lyme medicine. Yeah a dog with Lymes, allergies and chronic ear infections but...... she's my baby. She turned 8 in September. This year she has defeinatly slowing down and she is getting so white on her face.
With us going to Florida I will need to keep her on the flea/tick stuff and heartworm pills all year long. While we were at the vets today they cleaned her ears, she got all her shots, and I had them cut her nails. She's all ready to go, she loves it down in the sunny state too.
MY babies!!





Today they called and comfirmed both surgeries on the 2nd of Jan. I'm feeling better today about it. Aniexty!!!!! I did tell Avrianna, as she heard the message on the machine, that she is also going to have surgery with her brother (THE SAME TIME & DAY) and she did VERY WELL! I'm leaving it alone. I told her and I'm very surprise with the good reaction so I'm not going to rock the boat.
Yesterday Ms Kristi (OT) came out and made a lamb out of cotton balls with Danny and he didn't seem to impressed with it. He had this face on him that something was wrong. So I got him out of his stander and Ms Kristi played with him on the floor and sang him songs. I did show her the video I made of him after his shower yesterday...he was having a blast talking up and storm and swinging his arms around. Something got him excited and I was actually able to catch it on video. If I can figure out how to get it on the computer I will share, but I'm not very computer savy (my neighbor might have to help me out on this one so bare with me, LOL). I'm so happy I was able to get it on video it's so AWESOME. Today Mr Dan (PT) is coming out to play with him. He is in a good mood now so hopefully he will want to play with Mr Dan alittle later.
Well off to clean out the basement. Have a good Friday!