Overdue Recap of the Week

Boy I wasn't fibbing when I said there was ALOT of work to do once we were home.  It's taken the whole week, but I think I'm finally all caught up.  I really don't want to say that too loud or something else will pop up that I forget to do, reschedule, have done, etc.  It's one thing to be gone when extended hospital stays are "planned", but in emergency situations it really hurts the schedule and  the home front.  I swear if I don't push for home the medical staff forgets I DO have a life away from the hospital, lol and it's in need of attention so When I start to see this face return its time to bust out of there :)

 We were discharged on Friday the 24th.  Not only a great day just to be discharged from this visit but it's also the 3yr discharge anniversary from our extended stay with the crash of '09.  Danny and I were able go home after a 79days of being in the hospital, It would the first time our family was together and living in the dream home we built.  Aug 24th also is an important date as we started private duty nursing in the home, it's a date to remember :)

Look at this amazing sunset I was able to capture as we pulled off the highway down the road from our home :)  Beautiful!!

Once home I went into clean mode right away.  Throwing away anything that he used or touched before we left.  They still don't know why or what triggered this event and I was doing everything I could to prevent it happening again.  I had no nursing the night we got home, so I can tell you when my head finally hit the bed I WAS OUT!

I call this picture Danny Ala Cart!

Danny and Puff are the best of BFF's.  I'm alil bummed about it mostly because I don't have a great flow as of yet with Danny being hooked up to all these tubes ALL THE TIME.  Not only is he on Puff, but he is now on a Continuous feed with constant GTube venting 24/7 also.  Let me tell you we have gotten pretty creative with all the tubes so it all works like it's suppose to.  There has been some hiccups along the way, with feeding the bed, having the syringe tip over with all the residual in it, tipping over the water chamber and sucking water up all of Puff's hoses and giving him a shower well.......that might take awhile.  It's circus around here, but everyday I believe we are getting better at.  I'm sure Danny is watching us just rolling his eyes as we try to find a productive flow.....I do think he enjoys all the "extra" attention hes getting now though.  Once we "know" what we are doing I hope the awkwardness will subside.  Danny himself has improved greatly.  We went to visit Dr Kasper on Wednesday afternoon and ALL his labs came back NORMAL~ platelets, CO2, hemoglobin, everything......We fixed him :)  Well kindda ~ Danny still remains on Puff 24/7 and with how he reacts trying to take him off Puff, I don't really see an end in sight.  I LOVE LOVE LOVE how Puff helps Danny now.  Danny is more awake, more alert, breathing SO MUCH better.  Even more then he did, before this health scare, when he was on Puff.  The settings were changed to take deeper breathes and Danny really likes that.  As long as I see Puff n Danny playing nice together I can deal my issues with Puff and Puff can stay. 

Here's my Science experiment ~

This is what happens when I don't show anyone how to clean the pool.  I should have just called the pool company to come out and maintain the pool while I was gone, but quite honestly I didn't even think about it, till I saw this.  UGH!!  I've been diligent with cleaning, shocking, and back washing it pretty much everyday.  As of day it's looking ALOT better.  I'm just glad the pool is only going to be open a few more weeks and then we'll drain the whole thing so next year when we start it up for the season we'll have it power washed, sand in the filter replaced and brand new water.  Start a Fresh!!  I've had issues with the pool ALL season long and it needs a redo.

Avrianna has had many "news" this week.  She's learned how to do laundry from start to finish and I taught her how to mow the lawn with the BIG John Deer.  She is LOVING it......for now.  I'm sure it will be like every other chore where I'm dragging her to do it, but for now she asking me everyday if the lawn needs to be mowed.  WOW ~ my baby is "driving" and she's really good at it :)

After trying to grow her hair out for a long while.....Avrianna comes to me on Sunday and asks for a hair cut. And she wanted it short.  

Before~

After ~ Isn't it cute!!

Then the next day she decides that she wants the front even shorter.....

SO~

I think it's even cuter then the first cut :)

Yesterday Avrianna and I went to her school for an Open House, to meet n greet her new teacher and drop off all her supplies.  Avrianna is very excited to be a BIG 5th grader, her last year in elementary, and she feels more comfortable now that she's met her teacher.  I hope for a great year for her!!  Today I stopped in to Danny's school and registered him for this year, WOW a 3rd grader!  I got to talk with Danny's principle while there and I've already got the bug in her ear that I am going to be requesting an early IEP and change things around this year :)

I had to go in for surgery yesterday to have more of the area cut out where the Derm Doc removed a mole that came back A typical.  Holy cow do I have a LARGE incision for just a mole.  The location is one that could have been located better.  In my arm pit and the incision darn near goes right across the whole thing.  Man it hurts! It's bruised n swollen,  And every time I move my arm, it lets me know its there.  I have 2 weeks with stitches aka supposed weight restrictions and needless to say, I haven't been really good at following it.  I need to work on my listening skills more, lol.

On the MS front I'm pretty excited......I have found a APNP locally at NeuroScience that is willing to be part of my "Team".  I can't believe it!!  Everything isn't totally finalized as of yet, but the APNP will follow me locally through the year and I will still be able to see the Neurologist in Milwaukee.  I am getting the best of both worlds here!!  I don't want to jump for joy yet, but if this pans out I will be able to do my monthly infusions here locally and if I have a relapse where I need steroid infusions I can do those locally too.  How great is that to be taken care of locally under the direction/care of the head of the MS clinic from Milwaukee, who by the way to FANTASTIC.  I'm hopeful that things will work out.  The APNP I've been in contact via email has gone out of her way to help me out and she isn't even following me yet.  Woot Woot!!  Man I hope this comes together as it would be one less hurdle I would have to jump over with this MS crap.  When I'm doing good it's no problem to go to Milwaukee for follow up, but when I'm down in out.....honestly it's hard enough to just get out of bed some days.

Please take moment to remember Danny's dear BFF in heaven, Mattman.  He will forever be in our hearts and always in our minds.  Today he's 6 yrs old and I'm sure he's partying it up in Heaven today.  And on 9-6 will mark his 1st anniversary of going to Heaven.  Love you Mr RottenPants!!

With his awesome Momma Heather!

BFF's ~ watch out they were double TROUBLE!

I was happy I was home from the hospital and able to make my Grandfather's surprise 80th birthday party.  It was a great time ~ and for the first time.......I think ever the man was speechless, lol.  Happy Birthday Grandpa Kohl

Grandpa and his grandbabies :)

I was able to snatch a once in a blue moon picture of my sister n her family too :)

Overachiever

There was more adjusting to Puffs settings last might and it worked to bring down Danny's CO2 levels. It works so well that he is now too low, lol.  So there was two more adjustments made this morning and now we to see how Danny reacts to them. They were in at 2 to draw another blood gas on Danny. If it's in more of a normal range then we get to bust out of here :). There will be a lot to do at home, but its so worth it to be there instead of 100 miles in the hospital away from my family. It definitely helps that we have a capnography monitor (shows the amount of co2 he's blowing out of the trache or, entitle as they call it) at home. It was pretty comical watching most of the medical staff drop their jaws when I said we had one on the home as they are normally only in the hospital setting. Danny is NOT breathing on his own right now. I think all of the CO2 fluctuation and his extereme lethargy has suppressed his drive to breath :(. I hope in time he'll be able to be off the vent while awake, but for now Puff and Danny will be BFF's. in talking with the Pulm Dr i was made aware he might just be on Puff from now on. It's not the Danny's lungs are bad it's his drive to breath. So instead of damaging the lung ability/function they are thinking of just giving his body what it needs and that might be being on Puff indefinitely. Another hard pill to swallow, but as I always say.... As long as Danny is still there and fighting I will continue to fight for what he needs. And if he need to be on Puff to stay healthy and comfortable ..... So be it! Danny also is not peeing on his own. He's producing but not letting it out. So he needs to be Cathed every 8 hrs or we'll need to put a foley back in. A foley is a cath thats in all the time and it drains into a bag. We ended up taking the foley out yesterday as his Lil petergetter started bleeding :(. So I'm not quite sure what we are going to do if this is going to be a long tm thing. Most of Danny's blood levels have returned on their own, YAY! And the mystery saga continues......the generic labs that were done for an auto Immune disorder are all coming back negative. There are just a couple left out there but it's looking like he doesn't have Lupus. I'm so happy, but i'm not going to jump for joy till all of them come back. The test for the Lupus anticoagulant which he has tested positive for before has also come back negative so they no longer can use that excuse for his high PTT (clotting factor). Which makes things alil more frustrating as there is now no reason for those tone off other then the - BECAUSE IT'S DANNY - excuse. Sigh! I'm glad all these things are going getting rules out, but come on! Only my son can do all of this craziness with NO REASON. This morning I was able to have a nice chat with Danny's ortho surgeon and the decision has been made to fuse his back along with replacing the baclofen Pump in January. This will be his longest surgery EVER. The ortho said about 10 hrs, YIKES! There will also be a lot of blood loss that will require blood products. My anxiety is already UP :(. I'm hoping that this will improve his quality of life in the long run with illiminating lots of multiple surgeries down the road. After this BIG one he won't have a scheduled surgery for another 7yrs when the pump needs to be replaced again. The CO2 levels just came back great! I will be pushing for those discharged papers ASAP!

Teeter Totter

Great news Danny's CBC is improving all on its own :). This morning his platelets and hemoglobin took a wonderful jump in the right direction all on its own :). So they have labeled this event as Viral....aka they don't have a clue, lol. We'll see what the auto immune tests come back next week. Palliative care will keep me up to date with that follow up. Unfortunately Danny's CO2 levels are still high despite the increase of Puff's settings. It Is still at 48 and they'd like to see him more in the mid 30's  Pulmonary would like to see he CO2 levels better before discharge so they changed the settings even more and cross your fingers he responds well so we can go home soon.  I'm not getting my hopes up as to when because that it is such an emotional coaster when we can't leave, but I'm just happy the thought of discharge is in our near future. When Danny is ready, then we'll go. He runs the show :)
Wish Dan luck as he will be registering Avrianna for school tomorrow AND getting her ready for school pics.  Yikes!!  This could be interesting, lol. In the scheme of things it's pretty minimal as I have all the paperwork done, so he just has to drop them off and pay for registration n hot lunch. Which by the way is going to be totally different for us, as last year if she had 12 hot lunches the whole year that would be pushing it....but this year they changed services and she is interested in taking most of the days hot lunch, yay me!!  Avrianna is pretty independent with what she wants to wear and getting herself ready, she's way too old now for me to do her hair - At least that is what she keeps telling me :(. I'm just sad I'm going to miss it as I'm always with her for these kinds of things. I can't wait to find out who she has as a teacher this year, and I'm sure she will look fantastic for her last year of elementary picture. Can you believe she is a 5th grader and Danny is a 3rd grader this year. Wow - I'm getting old, lol.
I can't believe summer is over with ... What a way to end it, sitting around here
I'll keep you posted!

Unknown

Well we have been here for 5 days and still no answers as what's going on.  Good news they have been deligent in the tests so there are things that are getting ruled out one by one.  Good news is Danny has stabled out and his numbers have remained the same the last 2 days. They are still not where they need to be but they are not going in the wrong direction anymore. So with that being said, if his labs are still stable in the morning and nothing else pops up.....we might bust out of here tomorrow.  He's still pretty sick, but we can do the monitoring and cares at home seeing things are not "critical" anymore. The Drs ordered a panel of auto immune tests and we should have the results back sometime next week.  Which will tell us if he does have Lupus or some other auto immune disorder.  Seeing I have MS which is an auto immune disorder, he is (and Avrianna) are at a higher risk to having one also, well isn't that just great :(.  If all those tests come back normal they are shooting at stars as to why all of this craziness happened. Of course I get the .... It could be viral, or dysautonomia progression, grrrrr, don't you love those diagnosis' ... Just say you don't know, lol. All The numbers don't show infection except for the obvious tracheitis he's got going on.
Time will tell OR maybe it won't.
It will be so nice to be in the comforts of our home.  Being there I'm sure Danny will recover better and I PROMISE you my bed is more comfy then here, lol. Even though it's alil more chaotic when home it's easier on the family when we're all together.  A lot less stressful :). And I'm sure his "girls" are going crazy knowing others are taking care of him. Don't worry I'm making sure they are doing it right :). He misses them dearly I can tell.  I'm excited to see his reactions when he's back at home with his "girls", Dad, Avrianna, and dogs.  I'm bored!!!  There's only so much tv I can stand and i've hit my limit for the year I think, lol. I did bring a book and my scrap booking but my vision concentration levels are just not working well.  My left arm n hand are really driving me NUTS as they are still in a constant tingling, heavy, spastic hot mess.
I'll keep you posted on what's going on

A Typical

Things around here are still up in the air. We have ruled out a few little things here n there, but finding out why all this going on with Danny still remains a mystery.  Go figure!!!  His platelets continue to drop and is now at 53000, plus his hemoglobin has dropped to 10.   His Last PTT was way too high at 68.  His CRP which is an inflammation marker is elevating also. The EEG that was done hadn't shown any remarkable changes and the Neuro team is working on getting ahold of Danny Neuro in GB to pick his brain and see if there is anything he would recommend doing. I am so happy that they are working together with his Dr that knows Danny better.  The trache aspirate has shown multiple issues that are not only colonized but in a full blown party in there. The tests keep coming, and most are abnormal, but nothing has jumped out saying LOOK ITS ME.  Yesterday I didn't see his eyes much at all, so I'll be interested to see what his Hemo and CO2 levels are at now.  Labs were not ordered this morning so we'll see if they feel it's needed today.  I'm sure they will as he has now spiked a fever :(.  It so frustrating to see all thats going on and to not have a dx as to why. I commend the families that are undiagnosed as it would drive me insane. One theory is that Danny has an autoimmune disorder called Lupus. It would make sense to issues to he has not only now but things he  "normally" deals with ongoing too. Not that I want him to have an autoimmune disorder of top of everything else but it would be nice to have all the pieces of the puzzle put together.  Well see if/ when other things get ruled out if they do the test for it instead of speculating. You all know me, I'm all about Proving it.  
Avrianna has been her usual self busy busy busy. She went up north my dad and nephew to his cabin and she had a BLAST.  How awesome is that!!  I'm so happy she had a good time AND that she was able to hang out with my dad for some bonding time. Amazing how you see a change in your parent when they are with your kids. It's wonderful she enjoys spending time with him and it seems like he enjoyed spending time with her - yay !!  Yesterday she hung out with my sister n family and they went to Bay Beach for the day. They keep this up and Avrianna will want us to be gone more often, lol. Today she goes home, - back to reality and responsibility. I think Dan misses her as he's been holding down the fort all alone :(. He's also has kept himself busy, like that is a surprise, lol. As he can NEVER sit still. I'm alil jealous as he told me he's managed to cook up a pot of soup and bake a cake, both of Avrianna's favorites. That's ok i'll eat this wonderful hospital food - lol.
I am holding up around here. Stressful none the less, so "Wagener" has shown its face. My gate feels off, but that could be due to my vision not being the best.  My left arm/hand is taking the brunt of this as they are tingling/asleep MOST of the time. Frustrating!!!  The couch bed has giving me some extra kinks so I can't necessarily blame MS for that......yet.  In all this craziness with Danny I forgot to mention I will be going in for minor surgery next week as one on the moles that was biopsies last month A typical. Not that it is cancer just that the cells are more likely to turn into cancer if it's not all taken out. I just laugh and am not surprised as this is how things roll with me, but really come on, does it look as if I need another issue right now. It's not that they are doing surgery that bothers me...it's the lifting restrictions after words. Grrrrr!!
I'll keep you all posted

And this is why................

I'm going to BLOW!!!! I'm trying to hold it together as I know Danny needs to be inpatient to figure out what is causing him all these issues, but can this system get their shit together. This is a reoccurring issue when we are here with miscommunication and screw ups ...... then they wonder why I am the way I am. I've come with ALL the info written out in black and white for them as to everything needed for Danny and his routines, but things still get messed up. How much easier can I make if for Them.? This is why I try everything in my power to STAY home. Sometimes i truly wonder if they listen to me and are really trying to make him better? As some of this mistakes could potentially make him Very Very sick. We've been here less then 24 hours and here's the run down of everything that has gone wrong so far - Some of these are very minimual but things that have been repeatedly stated here 1. Lost paperwork 2 hrs into ER stay 2. X-ray came in to do X-rays in the ER and it was for a different patient. 3. They still have heaters set up to the vent set up for him 4. At admission RT was in here but didn't suction him out when it was evident he needed it. 5. His rectal probe was taped down on his leg with - yeap you guessed it the tape he is allergic too 6. I find it funny at 10pm the nurse found out I never signed a consent form to be here, lol 7. I specifically stated when they asked for allergies that he's allergic to Tobramycin and needs Tobi for his nebs and guess what was brought up? I'm so glad we found that out before it was given 8. After waiting 30 mins for his prn meds, during a seizure (as it got over looked and didn't get added to the med sheet right away) we opted to give the diastat as it was taking too long. Just before we gave the diastat the prn med came up so we were able to give the Clonezepam. About 10 mins later the Dr comes in to apologize as pharmacy just called her stating the syringe labeled Clonezepam was mislabeled and we gave him Clonidine. Which is another med he has severe sensitivity too. Guess that's why his seizure didn't react to the med and we had to give him Diastat. :( So the added Clonidine and diastat isn't going to help with his already severe sedation,but what is done is done and we'll just have to Watch him closely. I hope this doesn't set him back anymore. There is an incident report being written up over the mislabeled Clonezepam. Ok my vent is Done time to move on....... On the Danny front Over night he remained stable - not any worse but not any better either. In true Danny form everyone here is clueless to as why his body is responding like this. Is it an virus, infection, seizures, meds??? ......right now all options are on the table These are the issue at hand for Danny - severe sedation - hypoventilation - thick/ yellow secretions - right lower atelectesis - HIGH CO2 levels (68) - LOW platelets (65,000) - LOW BP (61/42) - low temps (91 F) - petechia n brusing - urine retention - seizures - severe drooling We've increased Puff's rate to 12 from 6 in hopes to help him blow off some of the co2. Over the nite he did drop down to 59 so I think that's working. They've increased his breathing treatments even more, but I haven't seen any improvement as of yet. They are really stumped with the low platelets whether it's an infection issue or if his body isn't producing or is destroying. Its Still a mystery :(. The low BP was tried to be "fixed" with a bolus of fluids, but it backfired and it dropped further 89/36 his temps started dropping again and his body is looking "fluffy" so I'm sure he's started to 3rd space :(. Right now they are doing an EEG to see if his seizures have gone status or if theres any change in the activity which could be a reason as to some of this issues. We are really no further ahead yet, but things ARE getting ruled out. Go figure no easy fix for Danny :(. Thanks for checking on and praying for my Lil Man!!

Inpatient

It's tomorrow already, way past my bedtime.....yet I'm wide awake. Today or should i say yesterday, has been a whirlwind of a day, one would think I'd be past out with exhaustion. Except my anxiety is HIGH and I can't put my brain in park. So here I am, writing to all of you.   I write to you from our old stomping grounds at CHOW in rm #513.  Today I had to raise the white flag, except defeat and leave our home ICU for here. I sit here listening the the ongoing beeping of the monitors of my Lil Mans heart rate with the changing tones ... Wondering if  this admission is going to be an easy fix or an "extended" stay. At this moment it's hard stay.  Danny is in a tail spin, hes a down right mess.  Danny just hasn't been able to regroup and catch a break since his rod surgery. If feel so bad for him.  Hes having a hard time once again respiratory wise.  I brought him in to see Dr Kasper on Wed as his secretions turned to a yellow/ green color and it was very thick, his right ear was bleeding and draining some pretty gross goo, and i knew something wasn't quite right as Danny had been sleeping more n more over the last few days. The X-ray had shown at that time an atelectesis in the right lower lobe. Thats very disheartening as the nurses and myself have been working so VERY hard at Danny's air way clearance. It's so disappointing to work at doing all the right things and they still don't work. Dr K did a panel of labs while we were there and Danny's platelets were low and PTT was high, but everything else came back good. This morning I ran another set of labs to the clinic so they could recheck Danny's platelets and they continued to drop. So with all the strange things going on with Danny, Dr K and Palliatie care thought it be a good idea to come to the BIG house and have Danny tuned up. Since here,in the ER , they redid his labs and Danny's platelets are still dropping, his BP is still low,his temp went down to 91 and we still have no real answer as to why.   They also drew a bicarbonate level and that was very high (at 68) so its obviouse Puff needs some serious adjusting.   Things right now are still up on the air, but I'm hopeful tomorrow will be a better day, and we'll start putting the pieces of the Danny puzzle together. I will post later, as for now I should really try and get some sleep. Thanks for stopping in to check on us