Tuesday, August 24, 2010

One Year Ago

I just wanted to do a quick update this morning. We have alot to do today so I'm sure I'll be updating again later today.
One year ago today we ended one of the longest and scariest hospital stays ever...Danny's 70 day stretch do to respiratory failure resulting in a "code blue" and having to be trached days later. Amongst a slew of things that went on while he was in the hospital. BUT 365 days ago I was able to bring my Lil Man home to start he new journey living with a trache and home nursing. To say the least I was sceptical, nervous, excited and scared on how things were to be played out. I brought him home to a new and improved home built to suit ALL of Danny's needs now and for the future. It was a NEW look on life all around, and ALL for the better. Danny is doing wonderful with this trache, I absolutely LOVE his home nurses ~I don't even consider them nurses anymore they are part of our family :), and the house is everything I wanted it to be for him. Words can not express how lucky we are.
BUT in true Danny form he is keeping the excitement alive on this anniversary. He woke up this morning breathing alil faster with a low grade temp...there is green goo coming out of his RED right eye and right ear. YUCK! We already had appts scheduled today so that's good that we don't have to "fit" him in anywhere. It is bad to say BUT I'm hoping this is the trigger for his discomfort for the last few days and not a hardware thing. It's never good to want your child to be ill but this would the lesser of two evils.
At noon we have to be in Green Bay to see Danny's long lost and very missed Neurologist. He has been furthering his education and put his practice on hold for the last year. Boy what a year for him to be gone in our lives....I hope they penciled in more then normal time for us as we have ALOT of catching up to do. LOL ~ I can't wait to see him again....he's an awesome doctor! Even though he's been "gone" he's still kept in contact with Dr Kasper and they have been talking about Danny's health the last year so he has a good idea of what's been going on in the life of Danny.
Then at 4:15 we have a doctors appt with Dr Kasper for Labs, xrays, and a visit. This was already schedule as we were going to start to find the mystery pain trigger that has made Lil Man uncomfortable for the last few days. I'm hoping we'll have a better outlook on what's going on with Danny after his appt today.
Cross your fingers it is indeed just an illness/infection and NOT another back hardware thing. I will keep you posted !

Saturday, August 21, 2010

We Are Here

Boy has the time slipped away from us :) So I have some of updating to do.

We had Whitney, cousin from Tomahawk, over for additional week and we had a BLAST with her here. I surprised the girls and took them to Noah's Ark last Thursday. I told them we were running errands for the day BUT when we ended up in Wisconsin Dells the over 2 hour ride wasn't so bad, lol. I was alil nervous about the rides, as I know I'm not as young as I used to be plus both girls had NEVER been on a water slide before. Of course they picked one of the biggest ones to go on first....they were very quiet while waiting in line going up multiple flights of stairs and then they had to tell me, when we were almost to the top, that they had butterflies in their tummies. I could tell they were nervous, heehee, and the noises they made going down the dark tunneled drop to now where confirmed they weren't too sure.....UNTIL it was over the they BOTH yelled out "THAT WAS AWESOME". Right there and then I I knew I was in trouble, YIKES! We ended up going on ALL but 3 of the rides and we had the best time. Thankfully the girls didn't make the weight requirement for the looped water slide, and they weren't into the two that were straight drops......phew ~ I will live to see another day, LOL. Dan and Danny bonded for the day while us girls played :)
The next day we had the neighbor kids over for a sleep over so we ended up having 5 kids in the house that night. The more the merrier I always say!! Luckily they weren't night owls that evening. I put a movie in around 9:30 for them and when I checked on them at 10:15 everyone was out.
On Tuesday Danny, his nurse, and I went down to CHOW for trache/vent clinic and post op from the VEPTR revision. The whole day went well for Danny. He was a trooper for the road trip and he gets GOLD stars for all the appts. I love having great appts, but on the other hand it's alot of work to get him there early in the morning for them to say he is great no changes need to be done. After his appt we went to the The Cheesecake Factory, oh yah it was soooo yummy :0).
Wednesday was Danny's last day of TPN, Yahoo! His gut is tolerating G-tube feeds once again and he's having BM's all on his own. He's not back to what he used to be but he's doing well, baby steps. So after the labs I took on Thursday came back all looking well his nurse Friday pulled the PICC line. Even though the PICC is the best thing for him to have for blood draws and quick intervention is was wonderful to pull it BEFORE an infection started. Unfortunately yesterday afternoon he started the tears and holding his breath when crying so I've upped his pain meds and have an email into his doc. Of course this all happens once again on a weekend but of all things the day after we pull the PICC line. I'm just sick to my stomach wondering if it's another hardware issue. GOD I hope not...I don't think he'll be having the hardware in for long if it is. We can NOT go through another hardware mishap/failure. We'll see what happens in the next few days and I'll keep you updated.
When we got home from the day hanging out at CHOW, to my surprise, the second photo shoot we'd done with Nicci at Little Foot Photography was in the mail. I opened it up immediately and I'm SO happy with the pictures this time around. They are AMAZING! I already have my portrait on order. I can't wait to put it up on the wall. Here are my favorites ~
True LOVE ~ BFF's
Her eyes are stunning ~ she's SO beautiful
Are there any words for this? I just cried!I will post more later as this computer isn't liking the idea of downloading pictures.
I've been dealing with a headache and some spasticity issues the last week which have been oh so much fun to function with, Grrrrr. But I'm trying to keep on keeping on with it and not let it drag me down too much. I have a Neuro appt in two weeks so I'll address it with her then and see what she has say about any relief. I'm not sure if it's a MS thing or my thyroid acting up as the symptoms I'm having can be connected with either. This is frustrating!
Unfortunately my computer died on me...it just went blank one day while working on it. So today I'm heading out to get a replacement. Until then I've been working on Dan's antique, LOL. It gets the job done but VERY SLOWLY, heehee.
I can't believe school is right around the corner (first day is the 1st of Sept.), but we, ok I am, so ready to get back into the swing of things. I am a proud mother of a Third and First grader, OMG where has the time gone. Both kids are registered and ready for the first day of school. Danny will continue to be "homebound" status, so that means the teacher and therapist will be coming to the house to work with him once a week. I can't wait to see them all again and show off how BIG Danny has gotten over the summer. I was hoping to have Lil Man start right away BUT with the new on set of pain I'm not too sure what is going to happen.
The garden continues to spit out ALOT of veggies ~ We've already pickled about 25 quarts of cucumbers and given so many away....so I can tell you we are NOT planting those next year, LOL. The corn is doing great, but we had a nasty wind storm 2 days ago that knocked it all over so I hope they haven't gotten ruined. I haven't gone out to the garden much as with all the rain it's a mucky mess and with the amount of mosquitoes around here, there's no way! Yeap I'm a wimp and not fan of them, LOL. So Dan has been the sole gardener.
The ABC show Extreme Home Makeover has been in our little town of Neenah, for the last week making an extreme home for a family here. It's AMAZING to see what happens when doing these homes, and how extreme the homes get from start to finish in a matter of only 7 days. Wow ~ the buzz was on in Neenah :) I can't wait to see what was filmed for the TV part of the show.
This week we have Dan's Dad and Claudia coming down to visit for a few days. Dan and his Dad have a conference
Thanks for stopping by to check on us ~ I hope to be more on the ball with my updates. I'm sure once school starts and I have more of "ME" time I will get back to posting more often :)

Monday, August 9, 2010

Picture US cousin

Avrianna is very excited to have her cousin from Tomahawk here for the week. What a great week for Whitney to come. We, oddly enough, didn't have anything planned and with Danny still being out a sorts it's nice to have someone for her to play with. The nurses schedule had been "off" this week with vacations and Danny being gone for surgery so he's been stuck with just his mom more then normal. Which makes it hard to keep Avrianna occupied all the time.
Whitney going down the slideAvrianna going down
These two are two peas in a pod :) They get along very well and they like ALOT of the same things. I'm sure she's LOVING it to have someone your own age around. Both of the girls are water bugs......I finally had to drag them out of the pool at 9:30 last night and they were right back at it after lunch today. Avrianna is going to have a friend sleep over for the weekend while there parents are out. So I'm sure she is going to be worn out. I am going to surprise Avrianna and take her to the Dells next week so I hope she's not too wiped. I think we need to have some much needed one on one time just us. Once again our summer has been cut short with us hanging out together with dealing with Danny and his needs so I'd like to take her somewhere where we can have fun. She's never been to the Dell's and I haven't been there since I was a kid so we'll experience it together. I figure if it has water it should be a hit with her. I can't wait!! One of my girlfriends might be coming and bringing her kids so they can show us the ropes and that way Avrianna will have some other kids to hang with too. Dad and Danny will have some bonding time in the evenings as during the day his "girls" will be here to take care of him.
Boy is it a HOT one out there today, WOW! I'm very thankful for the pool and A/C. I don't know what we'd do without them. With the heat I'm pretty much inside with Lil Man ~ he doesn't do well in this heat, at all. Not to mention heat and MS are NOT two things that play well together. That's ok, I can update the blog and start my newest scrapbook, our Disney trips. Lil man has been a BIG help, I'm telling you he's a great supervisor :)
Danny and I were served our walking papers on Friday afternoon. I wasn't so sure we were going to bust out of there as on Thursday night he become VERY irritable and my gut just sank wondering and worrying if the hook had become unhooked again. I hate that feeling, that it will always be in the back of mind, what if. We still don't have a reason why or how in the heck it happened the first time...so now I've become one of "those mom's" ~ UGH! So I asked if we could order a KUB to see if there was something going on with his tummy (as it was getting very distended again), knowing that I would be able to see the hooks of the VEPTR and know if 1. they were in place 2. something was us with his tummy. My hidden agenda, LOL. I saw the KUB and then took a deep breath as the hooks are still were they should be. Not so funny story here.....the xrays I posted on Monday the ones that sent him back into the OR as the hook was out of place (very obvious for even me to figure out) well the radiologist report came back with hardware in proper position. Are you kidding me?!? Just makes me trust the medical field even more, grrrrr.
Ok now back to the KUB....all I could say was WOW ~ at first I thought F.O.S (full of sh*!) as his bowels are full and black, BUT I found out it's just ALL air. Which is proof that he gut is still not awake. Danny gut is VERY SLOW moving to wake up, this time around too. So he is totally on TPN still for nutrition, but thankfully he is tolerating his meds through his g-tube. We'll just have to be patient, HA, and let Danny do things on Danny's terms or all we go is backwards.
The upper viewLower view
You can also see his new hooks in place and the right hip sublexed (one with the hardware already on it)
Boy was it nice to sleep on our own bed and eat decent meals. I came home feeling very sick to my stomach and exhausted but it was a LONG evening for us. With us getting out so late in the day I didn't have nursing waiting for us when we got home. So even though it was great being home it's always alot of work getting things in place and ready for Danny. I passed out even before my head hit the pillow that night.
The recovery road....AGAIN! This time around has been more painful for him :( BUT we are starting to need less pain meds and his wheelchair time has been getting better. The incisions, must to my surprise, still look great. The steary strips on the top reopened incision are off and it has healed over already....AGAIN! I have noticed a large "Dimple" or divit if you will, right above an incision on one side, that wasn't there before. I am going to have to inquire about it at the post op appt next week. He is healing very well and with my measurements he's grown about another inch with the revised VEPTR surgery, that would make him 48"...... Seriously Danny?!? BOTH my kids have this mentality that this is THEIR world we are just living in it, LOL.
Here's what Dan has been up too....his new hobby. Picnic Tables ~ I LOVE it, so now he has to build one for us as this one is going up north to the Shack. Handmade all for the wood cut from The Newwoods.
I don't know if you remember from the Fourth of July when we were up North for the Fourth we had Dan's cousin from Vegas take some pictures of us..... We'll here are some of my fav's. Thanks Lori!

When it gets quiet and there is a 7yr old around..........

Now I have to get all the pics together and figure out which one we will blow up for our family portrait. I hope to get the rest very soon.
Thanks for checking in on us!

Thursday, August 5, 2010

^^^^^ALEX ^^^^^

Alex gained his wings tonight at 10:30. Please continue to keep his family in your thoughts n prayers. Thanks to all our wonderful Blog family n friends that helped to support them the last few days. I can't even begin to imagine how difficult.
I hope you are running through the fields of clouds n dancing in your webkinz villages! You've touched so many lifes n hearts in your short life, you will be greatly missed.

Alex's CB site
Here's Danny's newest images of his revised VEPTR ~ From this view I can notice a very different placement of the VEPTR rods. I can only hope that it's an improvement for the better and he won't be in this predicament again. Sorry I didn't update yesterday but it was an exhausting and emotional day here. It didn't start too well, BUT when starting at the bottom you can only go UP. Right?
Danny woke up yesterday with the persistent fever he went to bed with. His poor heart rate was just a racing! I don't think he really got a restful sleep when his heart was beating like he was running a marathon, instead of sleeping. The doc put him on some BIG dog antibiotics in hopes that if something is brewing we can nip it in the bud. They ordered a few more blood tests to run and unfortunately the brand new PICC line wouldn't draw. UGH ! Danny's urine output came to a stop and what did dwindle out was not so nice in color. In addition our attempt to to start feeds yesterday failed miserably. I just wanted to crawl back in bed!
A dear friend of ours is here on another floor ~ Alex is to gain his wings today. It has been a long hard road for this amazing boy. He always had a smile on his face, a webkinz at his side, and a huge heart. Today we will lose a brave wonderful boy but the heavens will gain an amazing angel. My thoughts n prayers are with his family today.....I can't even imagine how difficult today will be for them. Something I wish no parent should ever have to go through. I hope Alex can finally be at peace and his family can find peace in their hearts. Spread your wings and fly sweet boy! Please feel free to check out Alex's CB site I felt very honored that his family allowed me to go in to talk with him yesterday morning and say my good byes. You'll have a special place in my heart Alex....ALWAYS!
Yesterday afternoon I requested Danny's second enema and all I can say is "The Ileus has left the body", heehee. WOW ~ I don't think I've EVER experienced a Code Brown that large, EVER! Right after his blow out it is was like a switch was turned off and his fever dropped and his heart rate went back to normal. His nurse put TPA in his PICC line and within a matter of minutes, Wha La it drew once again. So yesterday ended alot better then is started!
Last night went well for Lil Man and today he continues to chill out. So "the plan" is to get discharged tomorrow morning some time. We'll be going home on TPN once again and unfortunately back to ground zero trending back to g tube feeds. We've attempted a slow rate of formula again today, but I'm not sold that it's working yet. Time will tell and at HOME we have ALOT of time :) My hope is that the next update will be when we are home...... as always I will keep you posted with what's going on.
Dan and Avrianna have been busy this week. Avrianna has been a wonderful help to her dad while we've been gone. Today they both went in for eye exams so I can't wait to hear if they need new glasses or not. Today is Miracle Treat Day at Dairy Queen....as if they need a reason to go get a blizzard, but I'm sure dad will get roped into getting her a special treat.

Tuesday, August 3, 2010


Tonight we're watching Charlie and the Chocolate Factory ... well I am as Danny is out like a light, phew....I think he's somewhat more comfortable with his pain level:) BUT as I'm looking at the monitors his heart rate is dancing in the high 160's and his fever is over 102 despite being naked, having Tylenol, and cold packs. Poor thing! I think something might be brewing, even though I continue to hope it's just his dysautonomia kicking in. I was told earlier his labs looked ok, but after you look at the big picture......his white count more then doubled from yesterday and his crp level (inflammation marker) is high, so maybe they aren't that ok ~ especially with what going on right now. Is this just Danny over exaggerating OR is his body trying to tell us something is wrong? Well he has the night docs on their toes and alil alarmed so here comes the Calvary once again to draw every culture they can and then they are going to start him on antibiotics. As the common statement here is ~ "well you know, this is Danny" as Danny has burned a few docs here before with what "normally" should happen and how Danny is on the other end of the spectrum darn near EVERY TIME. Sigh! I was really hoping, seeing the newest trick of giving him more Valium on top of his pain meds seemed to help his comfort level better this afternoon, that I could think of busting out of here tomorrow or Thursday. Now I'm not too sure.....we'll have to see what the rest of the evening brings to rm #414. After receiving his second enema for the day we finally had a "Code Brown" that even required changing all the sheets, YUCK! But hey that alone, you would think, should make him feel alil better. So today had and still has alot of ups n downs not too mention some uncertainty for my Lil Man. Once again from a surgical stand point his incisions are GREAT now we sit and wait to let Danny recover, Danny's way as we all know if you push him too hard it'll bite you and we'll be back to square one. I hope that we will be able to go home soon. We miss his "girls" at home, even though he is getting great care here their not his home RN 's.... We miss our own beds, even though the ones here are........we'll lets face it, they're not so great. We MISS Dad, Avrianna, and Bailey VERY MUCH!
On a fun note....I chatted with my mother this evening. She's on a bike riding mission this weekend with some friends, on a pedal bike. She rode 37 miles today ~ mind you she hasn't been on a bike since she was a kid. She only fell off it once skinning her leg, but her bum I think is going to need a a break. I don't think she's going to make the 37 miles schedule for tomorrow as she might need to nurse her body back to working order, LOL. I'm very impressed though as I know I wouldn't have been able to do 37 miles. Way to GO MOM!

Monday, August 2, 2010

Hook on the loose!

For those of you that haven't followed me on Facebook today.....here's all the went on today at CHOW for Danny's xrays. Despite me hitting the snooze button multiple times this morning Danny and I were on the road just after 7:30 this morning. We got to CHOW about 9am which wasn't too bad of timing seeing we once again got stuck on Hwy 45 just coming into Milwaukee due to an accident involving a semi clipping a car and sending the car off into the median. Of course we happen on it as the rescue teams are getting there. UGh~ maybe I should have stayed in bed.
Once we got to CHOW we went directly to ortho and surprisingly the front desk knew that Danny was going to be showing up sometime day. We checked in and went over to xray, it's so nice ortho has their own xray team. Danny was a champ, he even let me take him out of his chair and sit him up for the xray without too much grief. Have I told you how much of a rock star he is? Not only did he do that, but his "wonderful" mother pulled his PICC line out about an inch during the transition, with not so much as a flinch from him. Can you say OVERWHELMED at this point? All I could do is sit n cry, I feel awful. I know it didn't phase him any, but it's the point that I did it. UGH!!!!!! At this point the ortho surgeon walks in and tries to make light of my PICC line situation by stating no worries he has to go into the OR anyways, as the hook has slid off his pelvis, so they can fix the line when he's in there.
So as you ALL know I have a picture fetish so ...... here's the images from last week. You can see the hook sitting on his left pelvis (to the right~ opposite the pump)
Here's this mornings xray showing it NOT on the pelvis and from the look of it .... it looks as if it's poking out of the skin. But don't worry it never poked out
After talking with Dr Tassone I didn't know what to think.....
Part of me wondered if maybe I should have brought him in on Saturday, but I really thought that the chances of it being totally off the hip were slim. I should have known better this is DANNY were talking about here.
Then I was happy that his pain was "justifiable" and that I wasn't just thinking loosing my mind.
BUT I really was hoping that my gut feeling was wrong and the doc would look at the films and tell me everything was fine go back home.
We were admitted to Room #414 the direct line is (414) 337-8104. Of course the ICU floor, this is always the case as he is trached and trached kiddos don't go to the general floor.
Danny was wheeled down to OR at 2:15. It's just amazing how the doctor had a FULL day of appointments in the clinic but was able to squeese not only our visit and xrays this morning but a 3 hr surgery. Danny has got some "PULL" around here I'll tell ya, LOL. When he went down I finally got some lunch with a friend. I was starving! By this time I could have eaten the butt of a skunk and been content with it. Now that is hungry, LOL.
Once the surgery was over with Dr Tassone came out to talk with me. He was "impressed" (not in a good way) how far off the left hardware was. The million dollars question is going to be "How did he do that?". He corrected the left side, but unfortunately he needed to reopen both the top n bottom incicions back up on the left side to correct it. Then he reopened the right lower incision as make sure nothing was tweeked on that side. Everyting was in it's place on the right BUT........he needed to grow out the rod already. Which means he grew a significant amount in the 3 weeks. So the theory is that his back has not only relaxed so much BUT he also grew in the last 3 weeks. UGH!! Will someone please tell Danny is only six and he should stay smaller for just alil while longer.
So now we are back to square one with recovery, with EVERYTHING! TPN is back up running full tilt so we can start over with ramping back off that and start the g tube feedings once we here bowel sounds. Danny's tummy is VERY hard in distented this time around, sigh. So the peeing might also be on issues along with the lack bowel sounds. He is in ALOT of pain this time around. Another BIG bummer!!!!
I'm not sure what "the plan" is for us. But I'm hoping it's just a couple day visit and we're out of here, but time (or should I say Danny) will tell. I will keep you all posted.
Thankf for checking in on and supporting us!

Sunday, August 1, 2010

VEPTR issue

The never ending roller coaster of Danny's life has taken another curve. Late yesterday afternoon Danny was becoming increasingly uncomfortable. When I went to reposition him I had noticed a new unfamiliar bump around his left pelvis area. I had rolled him over to check it out and there is a bruise with a part of the hardware poking at his skin at the incision site by his left pelvis. I called Dr Kasper to see what I should do as by this time he was in a rolling crocodile tear cry. Thankfully he was home and came over to our house to check Danny out. The theory is that the left side lower hardware has slide laterally which is causing the "hook" to be very close to the skin. Our worry is that it may poke through his skin causing not only extreme pain BUT can be a major site for infection directly to the hardware. I've been in contact with Dr Kasper and Dr Tassone this morning about our options, as of course it is a weekend, so it's not a quick easy fix ~ sigh! I will be taking Danny back down to CHOW either today or tomorrow to have xrays done (as they are the only way we can know for sure what going on inside) and possibly have his VEPTR repaired. I am packed and ready to go, we/re just waiting for the green lite as to where and when they want us to get there. I will keep you all posted with the Danny news!