Friday, May 30, 2014

A victory for Wynner

Insurance buckled thanks to the muscle behind our docs and case manager... All equipment has been approved and now we wait to see which home health supply companies can deliver all the needed equipment by tonight or hopefully tomorrow. Yay!!!! 

Happy Anniversary

I would like to wish my smokin' hot trophy husband a happy anniversary .... 16 years ago today!!! :) 

Knock Those Barriers Down

So in essence the only obstacle keeping us in the hospital is our insurance company. In order to take him safely home, we need to have new powerful equipment. Feeding tube equipment, a new bipap with O2 flow, more tricked out oxygen compressors and tanks to handle higher flow needs, and most importantly a vapor therm machine. It's considered "the Cadillac" of nasal canula breathing devices and our private insurance does not see the need to approve it. Because of their denial, no equipment can be delivered to our house and we currently no longer have powerful enough devices at home to maintain him at safe levels. Our home nurses are ready to begin working again and Dori is getting frustrated asking for Wynnie -- so now we play the waiting game. 
The hospital's case manager, the ICU doctor and ICU nurse practitioner are all making calls to "make the case" for the medical necessity approval of the vapor therm. It may take a few hours, or it may take a few days til all approvals are made and medical equipment is delivered. The hospice liaison is also helping the hospital try to expedite the approvals. Anyone have any brass knuckles we can borrow??
 #humanasucks #humanaishorrible #hashtagsarestupidbutihopehumanagetsofftheirassanddoestheirjob #humanaisinthedenialbusiness 

Best case scenario everything magically gets approved today and we go home tonight, worse case we are moved out of the PICU unit and are sent down to the regular hospital floor for a few days til all the elusive  approvals are made. Either way, he has made great strides in the right direction. Compared to Tuesday night and Wednesday morning, he is SO much healthier. Great job Wynner!! 

Wednesday, May 28, 2014

Wynnie Breathing and transition care

You can't tell but Wynnie is smiling under his mask

Wynnie's breathing difficulties have not improved so we took him to the pulmonologist yesterday.  After walking into the room the doctor immediately told us Wynnie was working entirely too hard to breathe.  By forcing out so much pressure to breathe he was burning too many calories, running the risk of dehydration and possibly retaining too much carbon dioxide in his system.

We went to the ER and were met by friendly familiar faces (nurses from past hospitalizations that recognized Wynnie).  After being placed on IV, tanking down many times on his O2 levels and his heart rate, he finally calmed down once we moved up to the PICU where he was able to sleep on my chest.  Then when I left at 8:30 this morning to run home and take a quick shower and pack clothes for the next couple of days, he became very upset with anyone touching him and without seeing me.  The only people he doesn't mind being with is Chris or myself… other than that he gets really really mad if anyone else gets near him.  He has been placed on a bipap-looking ventilator and cranked his O2 to 10 liters to maintain safe levels.  Normally at home he is on 1-1.5 liters.  We are trying to wean him down to a more manageable oxygen level so that we can manage it at home instead of staying here for weeks on end like we did last year.

We spoke with the hospital staff and learned on how we can transition Wynnie home without putting him through any painful or traumatic invasive intubations, surgeries or unnecessary procedures.  It's called Palliative/Hospice Care.  When we heard hospice I said "We're not ready to throw the towel in yet!" and they explained to us that adult hospice vs pediatric hospice are completely different.  For us that would mean that he would go home and continue with his current nursing and respite care staff.  But in addition to that, he would also have a nurse practitioner fully familiar with him and his case on call 24-7.  This NP could write us scripts for antibiotics, steroids, comfort meds and give us direction on what to do without us always having to rush to the doctors office, calling their office 3-4 times per week or rushing him to the ER every time he takes a turn.  This NP would visit our home once a week to check up on his condition, check his vitals and make recommendations on treatment to us and his nursing staff.

We've been so lucky to dodge so many bullets with both Dorian and Wynn, it was finally time to have those tough questions answered and have a more definitive game plan moving forward.  So thankful they were able to put our concerns at ease about the next transitional steps and hoping we can hopefully get Wynnie stable enough to go home by the weekend.  Prayers please for that to happen!  I was upset when they were first suggested home based hospice care but once they explained it, it just felt like the right thing to do.  Our main goal is the keep Wynnie as happy and as healthy as possible while still being a part of the family as much as possible.  I think this is a great compromise since Dori can't stop asking for Wynnie ever since yesterday.  So thankful for Chris and the strong great father that he has turned out to be.  Thankful for Dori who likes to keep things light and festive at home.  Blessed beyond measure with the love and loyalty that Ben and Alex feel for their baby brothers.  Also so appreciative for our friends, family and team of nurses that help us manage our fun family circus at home.  This journey is a little bit easier because of all their love.

Thanks for your continued prayers.

Thursday, May 15, 2014

May I say HELLO? 2014

Happy Mothers Day!!!  Chris and the boys spoiled me all day long… so thankful. 

Wynnie loves to look fancy.

Wynnie has been on/off room air since he contacted the flu in March.  When he thinks you're not looking, he bites off his hand socks and takes off his nasal canula. Sneaky Pete!   Here he is caught in the act! 

I tried getting a "caption this photo" contest going.  Both babies have such adorable expressions!! 

I had the AWESOME pleasure of meeting Mikey…. the man, the myth, the legend.  Mikey is 8 years old and his mom Trish has always been an inspiration.  I met them when in Florida earlier this month while on a business trip.  So blessed to meet other ML2 babies and their parents.

This was last week.  The babies were snuggling while Wynnie was taking a break and trying to breathe on his own.  

Wynnie thought it was funny that the lion was trying to get him.

Dori looks hot to trot in front of that fake waterfall. 
Last month I also had the amazing pleasure of meeting April.  Her angel Madison earned her angel wings right before turning 5.  April was in town visiting her sister so I had the chance to meet them all.  Although most of us ML2 parents share different zip codes, careers, races and life experiences -- the bond of having earth angels brings us all together as if we've known each other for years.  

These days Dori repeatedly asks to go outside with Papi.  I snuck a picture of their "happy hour" the other night while Chris was watching sports.  Dori must have been in the middle of a very exciting tale!  

May has been a beautiful month with lots of projects being completed around the house.  Ben and Alex are enjoying more time playing outside with their friends now that it's warm and sunny for longer at night.  I've quit being lazy and am going back on a regular basis to bootcamp.  Alex's choir competed in an outdoor choral competition against 30 schools and victoriously came away with TWO first place trophies (13 years running thank you very much).  Ben had a little accident at a friends trampoline so now he is sporting a Harry Potter-like scar on his forehead.  I told him it makes him look more interesting so he doesn't seem overly concerned about it.  

Wynnie has not been to school since March since he has been going on and off the ability to maintain healthy O2 levels on room air.  After much switching around meds, going back and forth to the doctor we are still seeing if this will be his new "normal" or if he'll eventually be able to no longer breathe with assistance.  Either way, he hasn't stopped enjoying his time with Dori and his day nurse Hilda.  He is turning into a little Diva with her and that's ok. 

A couple of weeks ago we expedited our visit to the cardiologist.  Our pediatrician and pulmonologist both thought that maybe the babies' breathing problems were heart related.  Both little guys had EKG's and cardiac sonograms done.  We were there for a total of 5.5 hours so as you can imagine the babies were tired and cranky after such a long day in downtown.  Dori was especially upset since he seems to think the cardiologist looks like Chris.  So for hours he kept screaming" PAPI!!!!!!" and holding his arms out to him so that he would carry him (with no love back).  As you can imagine, Dori was going nuts trying to figure out why "papi" wasn't holding him or making him laugh like the "real papi" does.  No matter how much I told Dori that Dr Lemler wasn't Papi, Dori wasn't hearing any of it.  It was funny but sad at the same time.  Dr "Papi" told us that Wynnie's heart is basically the same as last time, no major additional damage or problems thank goodness.  Conversely for Dori, he said that Dori's heart has "significantly worsened" since the last time he was checked last year.  Analogy:  Say that you get a new bucket to water your plants in the garden.  Unknowingly you buy a bucket with a small hole in it, so when you water your plants they are not getting all the water they need.  That was Dori last year with Aortic Insufficiency.  Based on his new results, Dori's hole in his "bucket" has significantly grown.  With a bigger hole of blood going out the wrong way, his body is getting less blood that it needs to function properly.  What does that mean?  Dori works harder to maintain his awesomeness.  He sweats and gets tired and gets cranky.  Imagine when you work out your heart gets faster and you sweat…. but eventually you relax and feel good again.  For Dori sometimes he feels like he's been working out a marathon race with no quick "relaxation" in sight.  How does that change things?  Not much.  We still do our best to care for him, we still have nursing help in the evenings to keep him comfortable and happy, and he still has the appetite of a 50 year old truck driver.  We are not changing much for him because he likes his life just the way it is.  There's absolutely nothing we can do to fix his heart so we just soldier on with love.  Are we being dramatic and asking for pity?  No.  We're not like that.  We do our best to keep drama at a minimum and to keep things as "normal" and positive as possible so life will continue as it always has.  Dori keeps us laughing with all his singing, all his loud talking and all his protectiveness of Wynnie.  As long as he's a happy camper so are we.  

Chris and I can't believe that at the end of the month it'll be 16 years that we married!  Next blog entry I might do a "16 things we wish we knew before we got married"  ha ha ha !!!!  Wish you all a great rest of the month!  Take good care!!