Monday, December 29, 2014

Wynnie's Legacy ... Heartfelt Appreciation!!!

Wynnie's Froggy and rattle took center stage.  

What a beautiful service we had in honor of Wynnie on December 6th.  Although we were sad to say goodbye to our sweet little boy, we were overjoyed at the outpouring of love and support from our friends and family that came from near and far to honor his memory. One person after another came to the funeral home with a toy for children of all ages.  Many tears were shed, but his celebration of life at our home was truly a celebration -- Wynnie would not have wanted it any other way because that's what he knew in our home -- love, laughter and friends.  December 6th 2014 was not any different.  

When we arrived to the funeral home Alex timidly asked me "where is Wynnie?"  ... we forgot to mention that we found the PERFECT earthly home for him until we see him again in heaven.  He was peacefully cremated and we'll keep him in this beautiful moon that is tucked away in a special place in our home.  We picked this because it looks like a big rattle (Wynnie's favorite type of toy).  Chris's idea was to take him with us (whoever passes away first) and Dori will be buried with whoever passes away second.  It's reality, it's sad, but it's truly symbolic of being a parent. I love that he thought of that so we can stay with our babies forever.  
Over the next couple of weeks our friends went into overdrive in collecting toys in Wynnie's memory.  We had friends collecting toys and donations ALL over the United States.  This photo is from the toys collected in Frisco from our friends Kacy and Frederick Zeeck. 

These toys were collected from our friends Stephanie and Patrick Kinser in Plano, Tx. 

The Dallas Phi Mu Alumnae collected toys as well at Francine & Rick Dalton's home. 

Here are the toys we collected in our home... this picture was taken after TWO SUVs full of toys had already been delivered.  

The 5th graders at Coyote Ridge Elementary (Dori and Wynnie's school) spearheaded their own toy drive.  The 5th graders know the babies well since they come in as special play friends to the Functional Life Skills class on Thursdays, so they played with Wynnie last year while he still went to school. 

Chris and I conservatively estimate that YOU helped us raise over $10,000 worth of toys, gift cards and cash for Hope's Door and Catholic Charities.  Just imagine how many HUNDREDS of children this Christmas season were blessed and felt LOVE because of YOUR generosity!!  Our friend Angela who made MANY deliveries to Hope's Door told us that the administrators there have been so thankful from all the donations.  Wynnie's toy drive amassed so many toys and gift cards that they set up a special Toy Store for the abused women to "shop" for their little ones.  This toy store would not have existed if it weren't for Wynnie.  This toy store would not have existed if it weren't for our friends and family (and even strangers that sent in donations!).  Wow!  Wynner's legacy truly reminded our family the true meaning of Christmas -- about giving, about loving, about honoring.  Thank you all SO VERY MUCH for bringing the spirit of Christmas to life.   

Just a couple of days before Christmas, we gave Santa a visit.  We took Froggy to represent Wynnie.  As you can see, Dori and Santa shared a sweet moment together.  

Thank you Wynnie for making us better by your example.  There are people who live to be 80 years old that don't leave as big of an impact as our sweet chubby little warrior Wynnie did.  We are so proud of you sweet boy.  We love you, we miss you, and we can't wait to see you again!  Thank you for setting us up for a blessed 2015.  From our family to yours, we hope 2015 brings you joy, health and prosperity.

Thursday, December 4, 2014

Wynner's Toy Drive Details

For Wynnie's Toy Drive, if you are not able to stop by our house this weekend then please send toys or toy gift cards (toys r us, walmart, game stop, target, etc) to Hope's Door Inc. Please specify your gift is in memory of Wynnie Johnson who wanted kids to have a Merry Christmas for him.  

If you live in town and want to give an actual physical toy, their toy drive specifies that toys need to be new and unwrapped and you can choose an appropriate gift for age newborns-17 years old.  

Send donations to-- 
Hope's Door 
Attn: Adela Plasik 
Holiday Toy Drive 
860 F. Avenue Suite 100
Plano, Tx 75074

We thank you in advance for your generosity.  Wynnie will be so happy!  

Wednesday, December 3, 2014

Wynnie Is Now an Angel

Our precious son Wynnie earned his angel wings last night around 10:20 pm in our home, in my arms with Chris right beside me.  So many times I've read blogs of other i-cell parents who write of their child passing away and every time I read their's I would bawl my eyes out and think that sadly that will be us one day.  After six years of being such a loving and sweetly brave warrior, Wynnie took his last breathes in peace.

Disclaimer #1:  **Forgive me if I ramble.**  I'm trying to capture all my thoughts and emotions because someday Ben and Alex will be married with children of their own, Chris and I will be in our 80's forgetting where we put our glasses and I'll want to remember every little thing about Wynnie and his last day with us on earth.  One day I'll read through these "old" posts and be lovingly reminded how blessed of a family I was given by God and what a beautiful life I have lived with all my boys.

Disclaimer #2:  **This is the ONE time we'll go into detail with ANYONE about how Wynnie passed away.**  We've already had people in barely 24 hours of him leaving us, ask us details about how he died and specifically how it happened.  I'm sure it's all based on good intentions, not morbid curiosity.    Whether you are a dear close friend, a relative or an acquaintance  -- whoever you might be, please don't ask us.  If you are not married to me or if I did not give birth to you, then this disclaimer applies to YOU.  Still curious about how Wynnie passed away? Read this over and over again until it satisfies your curiosity and don't EVER ask ME or CHRIS or the BOYS about the details because Chris might just punch you in the face and I won't stop him.

Whew.  That feels better.  Do I sound rude?  I'm sure I do but don't get your feelings hurt.  Disclaimers are out of the way and now we can move on to what's truly important --- Wynnie.

Normally when the babies get sick I mention it in the blog or online to my friends but I don't get all dramatic about it and in typical Chris/Mercedes fashion, we weren't going to alarm everyone about how Wynnie's health had declined since Thanksgiving (and how he took a major decline in lucidity on Saturday).  We've learned that hospice, doctors and many other well intentioned people have told us that "Wynnie only has one month to live".  In fact we were told this 6 months ago.  So to avoid the "boy that cries wolf" syndrome we kept Wynnie's rapid decline close knit to ourselves between us and our home nursing team. After being evaluated and having serious discussions with our specialists and our hospice agency, our pulmonologist confirmed to us our worse fears that as of Monday Wynnie probably only had 2-3 days to live.
This picture was taken on Monday.  Dori was keeping a close on "Ninnie" 

Yesterday, Tuesday December 2nd started as any other.  As usual, when anyone wakes up we walk out to the family room to greet Wynnie and check in with his night nurse to see how he did over the evening while we were sleeping.  I had a weird feeling after hearing how much of a difficult night he had so as soon as Ben, Alex and Dorian went off to school I was determined to hold Wynnie the entire day and only stopped for a few breaks (bathroom, a shower and a business conference call with a client).   Other than that, I held him and talked to him and kissed him and stuck to him like glue while his nurse Hilda helped me with feeding, breathing treatments and overall comfort.  I also kept showing him the "Heaven is For Real" Jesus painting on my phone and kept telling Wynnie  "Make sure you remember this face... you'll see him soon!"  If you have read this book you know exactly what I'm talking about! If you haven't read this book, please do.  Selfishly I also kept showing him pictures of my mom and dad since I have a ton of pictures of them on my phone.  Wynnie would gaze at them and I wonder what he was thinking all day long.

This is the painting from the book.   

Chris spent half of the evening with Ben and Alex going out to dinner and then watching and cheering on a basketball game in the other room while I cuddled with Wynnie in the family room.  I don't know what game they were watching but it sounded like a sports bar atmosphere with those 3 so it was nice to hear the laughter and hoopla they were having together.  All evening Marcia aka Gigi was entertaining and taking care of Dori in the room with me.

This was taken sometime between 6-8 PM last night... Dori was laughing while we has giving Wynnie kisses.

Around 8:45 pm when we were attempting to send Ben and Alex to bed, they were trying their usual "can we stay up for five more minutes" plea.  Alex brushed his teeth and kissed Wynnie goodnight while he waited for Ben to go upstairs to sleep.  Random fact: Ben is scared to sleep in his room by himself now that Alex has "moved out" of Ben's room and into his new room (Viktoria's old room).  Therefore they have "sleepovers" every single night so Ben won't be afraid.   At bedtime we'll hear them ask one another "you wanna have a sleep over in my room or your room tonight?" as they walk up the stairs.

But last night Ben wouldn't leave Wynnie's side.  He took a blanket and set it by my feet and said "I'm not leaving Wynnie because his nurse isn't here yet and he needs me to protect him."  I reminded Ben that Wynnie's night nurse's shift doesn't start until 11 PM and that's too late for him to stay awake.  He jumped up with his blanket and pointed at Wynnie and said "I have to stay!  Look at him!  Wynnie looks HORRIBLE!"  To defuse the situation I said "well that's not very nice, how would you like it if Wynnie looked at you and screamed that YOU looked horrible?!"  Ben smiled and ran out of the room.  Five seconds later he walks back in with Froggy (his most cherished stuffed animal that he's had since he was 3 and he never allows anyone to touch).  He said "This may sound weird but I want Wynnie to have Froggy."  I looked at Froggy all torn and bandaged up and I said "I'll proudly let Froggy protect Wynnie tonight because Wynnie is a lot like Froggy.  Froggy has been ripped, stitched, taped and broken so many times but look at his big smile on his tough face!  Just like Wynnie!"  Ben smiled real big gave Wynnie a kiss a ran upstairs.

Near 9:30 pm I gave Wynnie a breathing treatment and it didn't settle well with him.  His O2 stats dropped and he was doing a sad silent cry with his mouth very open.  I quickly put him down, ran to the kitchen and measured out a medium dose of morphine to calm him down and help him focus back on breathing instead of what had troubled him.  I called Chris into the room and told him Wynnie looked sad and was crying, so Chris held him for a while and was able to calm him down while singing to him and get him to make his 02 levels go back up.  Once Wynnie had stabilized Chris went back into the other room.  Then after that everything happened so quickly I don't remember the timeline of things.

Within minutes of Chris walking back to the other room to watch the game, Wynnie started to breath very differently.  He was taking longer deeper breathes and looking straight ahead at me.  Marcia called Chris to come back to the room with me.  I kept telling Chris "he's leaving ... on my God he's leaving."   Chris kept gently rubbing his chest and I kept whispering in Wynnie's ears that everything would be ok, that he was going to see beautiful things and he didn't need to be scared.  Wynnie looked peaceful as he kept breathing deeper.  The deeper he breathed, the lower his heart rate monitor was getting.  I kept whispering and kissing, Chris kept rubbing his chest and rubbing his little hands and after just a few minutes Wynnie's pulse ox machine all turned to straight lines.  No numbers, no reading, just lines.

His day nurse Hilda asked that if anything happened to Wynnie day or night she wanted to be there to say goodbye so Marcia called her and she came over within a few minutes. We decided to wake up Ben and Alex and tell them Wynnie had passed away.  I couldn't let go of Wynnie so I asked Chris to go up there and tell them.  He said when he walked into their "sleepover" that the boys were huddled up together sound asleep in Alex's room.  He woke them up and told them.  It was so late that they were both groggy and incoherent.  Chris asked them if they wanted to come downstairs to say goodbye to Wynnie.  He said "it's your choice if you want to, you don't have to.  If you don't want to that's ok -- we just want to be honest with you an let you know what happened."  Both boys sleepily hugged Chris and cried for a little bit and went back to bed.

By that time Marcia had called our hospice nurse and she was quickly on our way to our house.  Between the 3 of us we were trying to find a heart beat with the stethoscope but the only thing we could hear in his body was the swooshing sound of the air that the machine was still blowing into his lungs.  We took the machine off his face and held him until Melinda his hospice nurse arrived.  Prior to coming out we told her we didn't think Wynnie was going to make it through the night "Do we have to call the ambulance or can we just wait for you?"  She said that unless we wanted them to come out and do CPR on him (they are required to if they are called out to your house) we can or we can just wait for her.  By law she has to listen for a heartbeat for 1 minute and then he can be officially "pronounced dead".  She came, she did and we held him while she was in the kitchen making all the phone calls on our behalf.  For nearly 1.5-2 hours we were able to love on him, kiss him, bathe him and dress him up in a cute outfit Chris picked out for him.  The funeral people came to the house around 12:30 pm.  We walked Wynnie out to the front of the house where they had a gurney/bed thing on wheels.  He looked so peaceful and handsome as he was strapped into his bed and his head was place on a pillow and there were crisp white padded sheets underneath.   The most painful part was the final kisses on his face before they covered him to load him up and take him away.

Chris and I stayed up for a little while longer.  He made me 2 stiff drinks and I think he had 1-2 also.  We cried, watched boxing on HBO and cried some more until we were both falling asleep in the chairs.  

The next morning I woke up the boys for school.  We decided the boys need to keep a regular routine for the sake of normalcy instead of staying at home all day watching us cry or going to the funeral home with us to make arrangements.  When I woke them up they were still very sleepy so I asked them "do you guys remember what papi told you last night?  That Wynnie passed away? Are you guys ok?"  And like a ton of bricks it hit them again and they both started crying.  We hugged, regained our composure and came back downstairs.  As soon as Ben entered the family room and saw that all the breathing machines were turned off, and Wynnie and all his blankets were gone Ben ran to the couch and started crying again.  Honestly I had done the same thing just 15 minutes before waking up the boys -- all the silence in that room and no Wynnie wrapped in his comfy blankets in that room was so sadly strange that morning.

Tonight Alex had a choir performance and I was so proud of him.  His choir has worked very hard for these next 2 performances and while he was singing on stage in front of hundreds of people singing a christmas carol about peace my eyes welled up in tears because it reminded me of Wynner.  I can only thank God for giving him such a restful passing in my arms, surrounded by the people who loved him dearly.  I hope so badly that he felt our love and not our fear.  Nobody was panicked, nobody was screaming crying or making a bad situation worse than it needed to be while he was being welcomed into heaven.  Everything was calm and beautiful just as it should have been.  I could not have asked for a more beautiful earth angel to be my son.  Chris always said Wynnie "is the sweetest most innocent Johnson of all the Johnsons" and he is 100% right.  I can go on and on about how much Wynnie is loved, how much we will miss him and how heartbroken we are.  But words cannot describe what we feel.  But our faith in God, our love for one another and our certainty of seeing him again will be our comfort.  I am so proud of him!!!!  He was a warrior who now has been finally set free to do all the beautiful things a normal healthy 6 year old is supposed to do.  I imagine him running, jumping, laughing and talking  --- happy and free from pain in the most beautiful place int the universe.

In lieu of meals/flowers/donations our family will be conducting a toy drive.  Wynnie always loved playing with his favorite rattle and all his other fun small toys.  Since it's so close to Christmas, we thought that a toy drive in memory of Wynnie could make a direct impact for another child's life this holiday season.  Toys will be donated to Hope's Door & Catholic Charities of Dallas for underprivileged children.  Please email me for more information about the toy drive and if you'd like to help children aged newborn-17 years old.  Toys R Us, Target and Walmart gift cards can be sent to our home address for the toy drive as well.  Email me or Comment on this blog and I can give you more details.
Wynnie holding his favorite rattle on his final day.

Tuesday, December 2, 2014

Being Prayerful

"Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus." -Philippians 4:6-7

Thanksgiving was a hit as we hosted "Friendsgiving" with our friends the Caracalas family down the street.  Dori had a fun time entertaining the adults and Wynnie had special bonding time with Ty and his mama while they snuggled with him on the floor.  Chris did a fantastic job making TWO turkeys (one smoked, one oven baked) and a baked ham.  The kids all had fun playing around all day together.  Chris's baby project of finishing up our home bar finally was "unveiled" at Thanksgiving so we decided to "break it in" and we did a very good job at that. 

Over the past couple of weeks Wynnie has been working real hard at breathing.  He has lost a little bit of weight and now requires being on his bipap mask 24 hours a day in order to maintain his O2 levels as high as he can make it go.  He gets it off quickly for baths and feeding but he has decided to not fall victim to holiday weight gain so he's been eating a little less and snuggling a lot more.  So we have to be more "efficient" at his feedings to keep his belly happy.  

Our doctors, nurses and hospice agency have been wonderful at accommodating medication changes, medical equipment requests and respite.  They have bee open to our suggestions from stuff we find on Google (how did we ever survive before GOOGLE?!?).  Thankfully our doctors and hospice agency have been willing to dig deep in their "bag of tricks" to help open up his lungs in keeping our concerns and parameters in mind.  "Team Wynnie" is in full force and instead of worrying, we are focusing our energy on ensuring he feels loved and safe and being prayerful that he continues to turn the corner in the right direction over the next week or so. On occasion we have been giving him morphine and lorazapram (sp?) to help with any pain or anxiety he might be feeling.  I wish they'd make automatic "mommy and me" prescriptions of those narcotics so I could take a shot when Wynnie takes some too ala Karen Walker on Will and Grace.  (Bad joke, I know.) 

In the meantime, thanks to all our friends and neighbors who have come over and hung out with us to watch football, hosted Ben and Alex over for playdates and sleepovers, and have done fun things with Chris and I on adult nights out.  We are so THANKFUL to keep things as normal as possible for ALL our boys and (for our own sanity) keep things normal for us as Wynnie's parents. As long as Wynnie feels comfortable and feels our faith in him and our love for him, we hope that a loving and positive environment will foster an environment for healing.   

We all took turns watching Wynnie while the tree and Christmas lights went up on Friday and Saturday after Thanksgiving.  While hanging ornaments I could hear Ben in the other room with Wynnie.  It sounded like he was at a swimming championship competition.  I could hear Ben saying "come on Wynnie... you can do it!  Breathe harder.. get those numbers up!"  And when he'd lean in to give him a kiss Wynnie would bump up a couple of numbers and Ben would cheer and would run into the other room and say "I'm helping Wynnie get his numbers up!"  He's a coach at heart just like his Papi I suppose, it's been very cute.  

Thanks for keeping Team Wynnie in your prayers as we continue to cheer him on.  My mom always used to sing that song "Don't Worry Be Happy" when she would do housework and I find myself singing that to Wynnie too.  We'll keep being prayerful, positive and united for Team Wynnie.  I hope Wynnie understands how important of a warrior he is and how loved he is by so many people.  Go Wynnie!!  Good job buckey!!! 
Flashback Tuesday! :) I found this from June 2013.  Isn't he handsome!  

Monday, October 27, 2014

Expectancy vs Expectations

Happy Happy Birthday to the sweetest, happiest and cuddliest little boys on the planet!!!  We are so grateful to celebrate Dorian and Wynn's 6th birthday!  Wynnie was so excited that it's his birthday today that he didn't sleep a single wink last night (I'm attributing it to his zeal for his birthday, not the fact that he is finishing out his steroid course of therapy that makes him wide awake for days).  Dorian has been singing happy birthday to himself all weekend so today is just another day where he thinks everything is awesome.

Wow.... six is A BIG deal!  When they were first born we were told they would have an average life expectancy of 4-8 years.  We had no idea what to expect when faced with the news we had 2 terminally ill children that God had entrusted to our care.  By all means and measures, Dorian and Wynn have blown all expectations out of the water and continue to surpass any expectations we could have ever had for them.  Life EXPECTANCY is very different from our EXPECTATIONS.  Expectancy is based on numbers.  Expectations are based on hope.  Dorian and Wynn have always given us hope through their smiles, laughs, snuggles and love.  Even in their worse days, they have always managed to show us their warrior spirit.  We are so proud of all the lives they have touched and all the people their bravery has inspired.

Since their grandparents come into town later this week we'll be having a "My Little Prince" themed party for them.  Royalty, not rhythmic curly haired short guy, but (note to future self) a Purple Rain theme would totally be right up Dori's alley as well.

We "adults" had a great time at our annual Halloween Spooktacular -- we had our biggest turnout ever and look forward to sending all the donations over to the National MPS Society.  Dorian and Wynn get recognition for all the money they help raise for the National MPS Society for ML2 research so we love showing them their names in their newsletter and all the thank you cards they receive.  They are hard working little fellas!!

Two weekends ago we went to Chicago ... I had a business trip out there and then Chris, Ben and Alex met me out there for the Husker/Northwestern game.  The boys LOVED Chicago and we had a blast with them!

We're looking forward to having a great week celebrating Dori and Wynnie... thanks for all that continue to follow us and we challenge you to do SIX fun things this week in honor of Dori and Wynnie. Woo hoo!!!!

Thursday, October 9, 2014

All about Dori (and others)

We If you didn't already know, Dori is kinda a big deal (as is Wynnie) and if you didn't know-- he'll be happy to let you know. 
Today Dori had his new "eye gaze communication device". He has it for a 30 day trial to see if insurance will approve it (fingers crossed). What's it do? It has lots of boxes on the screen and he launches the boxes by just looking at them. Then he can ask for things or ask to do things based on the friendly voice commands from his gaze. So if he wants a bath, is hungry or wants to watch videos-- this is another way of him telling us. My only hope is that Chris doesn't sneak away with it and all day long on the weekends I hear "make me a sandwich, someone get the newspaper, change the channel to the Husker game"... Ha ha ha!! 😆

We are looking forward to Dorian using it and maybe even Wynnie will want to get into the action. 
Hers also a brief little video of running amuck at school. He loves the freedom of walking the halls and this past week was his school's book fair so he was excited to scoot to the library to see all the action. He's such a social butterfly. 

Last week Dori was his classroom's student of the week. Ben and Alex helped him jazz up his biography poster. Dori was extremely proud of himself

Alex keeps wow'ing us with his culinary delights and vast knowledge of American and world history, Ben keeps busy going to friends house, and Wynnie has done fantastically with home-bound school. 

Wynnie originally started with twice weekly 2 hour sessions, but that proved to be exhausting for him. State law requires 4 hours minimum per week. So now we've broken it into 3 days per week and his teacher Miss Deborah has fallen hard for sweet little Wynner. Can you blame her? 
Humbled and thankful that on October 27th we'll be celebrating SIX amazing years with Dorian and Wynn. We love them so much, I only wish they truly knew how much better people they have shaped us to be. 💝💝💝 


Friday, September 12, 2014

Back to School Tango

"I have a supportive group of girlfriends, a great husband, and an understanding family.  The rest gets done with grit, spit and a whole lot of duct tape."  - Julia Roberts

Julia Roberts pretty much describes how stuff gets done in our family.  All the grit, spit and duct tape have all come together now that school is back in session.  It's nice to have Ben and Alex back on a routine, Dori is BEYOND excited on being a 5-day-per-week kindergartner (yes... KINDER!!), and Wynnie is happy to have the house as peaceful and quiet while all his crazy brothers are gone for the day.

This is my face on the first day of school (or at least how I felt)

As soon as we dropped off the boys we went to celebrate at iHop. 

Wynnie feels zen... the sweet sound of silence and tranquility during the day.

We tried a group picture on the 1st day of school but as you can see Dori was 2 seconds from being dropped. yikes! (don't worry he wasn't)

Here are my most favorite 5th graders in the whole entire planet!!

Here is Dori very proudly showing Papi his locker.  Wynnie has a locker right next to Dori's just in case he feels well enough to go to school. 

Wynnie is staying at home and will soon begin "Home Bound" school with the school district.  We much prefer this arrangement instead of taking him to school everyday and exposing him to potentially too much "stuff".  Also since their teachers have never had a child on portable oxygen before, we just felt it was best for him to stay home and receive one-on-one attention from the teacher that the school district will send out a couple of times per week once all the paperwork and approvals have gone through. 
And this is why Dori loves school so much ... 

Ben and Alex have decided to give soccer a try this fall.  They LOVE it!!!! They are undefeated (2-0).  Alex is the 1st half goalie and loves it.  Ben is such a fast runner that we are trying to get him to take advantage of his speed.  My father would be so proud of his grandsons playing soccer. The games are really fun because the moms do most of the screaming.  ha ha ha!  
Vamonos Benjamin! 

I'm searching for Hamburger Helper gloves for Alex. 

Their teammate scored a goal and it was a VERY dramatic celebration filled with lots of bravado and testosterone. 

Con ganas Alexajandro!!! 
We are very happy that the school year has started off very well for all 4 of our little men.  It's humbling and equally awesome to think that Dorian and Wynn will turn SIX years old next month!!!  God's grace and all our helpers have made it a smooth transition for us all.  We are extremely proud of Ben and Alex trying new things and opening their minds and hearts to new experiences and new friends around them.  

Tuesday, July 22, 2014

Wild Ride With Wynnie

This summer has flown by. We've taken 2 fun family vacations and back-to-school shopping is just around the corner.  Dori has been enjoying his celebrity status at school.  The teacher assistants and secretaries playfully fight over who gets to escort him to class and who gets to take him on walks in the halls on a daily basis.  It's hard to keep humble since he is a rock star at school.  ha ha ha! 

What's been keeping us on our toes is Wynnie these past 2 weeks.  He's been fluctuating between having fevers, not having his Airvo (the cadillac of night ventilation equipment) and his bipap from not working.  He has tanked so quickly on both of those pieces of equipment that we haven't used either one of them for over 2 weeks and have just kept him on his nasal canula/air concentrator.  For 2 pieces of equipment that were supposed to be awesome, they sure have fizzled out.  The new respiratory company that has come out 4 times to test it all out keep telling us it's all perfectly fuctional but we keep saying "the machine may 'work' but it's not 'working' if he turns grayish blue when he's on it!!!"  So for a 5th time they will be coming out today and I'm sure the chick hates me but at this point I want to make her feel like she's actually earning her pay check instead of acting like we don't know how to use it.

But Wynnie has been a champ and we've been fortunate to have his day nurse, Hilda, who has been intuitive enough to call the hospice for additional support (meds written, equipment ordered) when I've been gone for work or when I've been gone with Ben and Alex. 

Last night after 8 PM Wynnie started to struggle quite a bit, his O2 only hovering in the 60s-70's for most of the night (normally when he is nice and happy he stays near upper 90s).  Chris and I were working alongside the night nurse from 2 am- 5am with no luck.  With his O2 levels being low, his heart was having to work very hard since it wasn't receiving adequate support (his heart rate was fast and his jugular vein was protruding).  He probably felt like he had just ran a mile, poor little guy. 

After ordering new meds this morning and getting the ball rolling on new equipment, he really started to breathe poorly... dipping down as far as the 20's and 30's and looking pale.  It's hard to trouble shoot and play "ER" when Ben and Alex are nervously watching and saying "he's in the 60s!  He's in the 50's!  Come on Wynnie!"  He had a hopeful cheering squad cheering him on while we connected him to the dusty bipap we haven't used in over 2-3 weeks.  We had to rig the equipment we already have until new equipment arrives so this is our version of "pulling out the duct tape" and trying to make things work for his oxygenation issues.  Thankfully Ben and Alex's cheers, Hilda's help and my reconnecting of old equipment all worked.  For the past hour Wynnie has been receiving nasal canula (concentrator) support at 4L plus his bipap which is at 4L thus giving him a rigged up 8L of support.  And HALLELUIAH he is now up in the low to mid 90's!!!!!!!!!  

Once he got up to the 90's I started bawling because it was like a emotional release.  Because if that didn't work we'd have to take him into the hospital and there's really nothing more they can noninvasively do at the hospital that we're not already doing at home. Wynnie knows it... after a few minutes of being stable the little stinker was smiling at Hilda and I through his mask and shaking his rattle. 

Please keep the following in your prayers:  Wynnie's stabilization back to health, Chris and I's strength & sanity, Ben and Alex's comfort in knowing how awesome they are even when we are tied up with the babies often, wisdom and love for our nurses and caregivers, and patience and wisdom from the doctors and medical supply companies we work with on a daily basis. 

 Wynnie last night before he started to tank.
Wynnie today after he stabilized and flashed us a smile while playing his maraca.

Tuesday, June 24, 2014

Summer Fun

All 4 boys have been enjoying their summer so far. Dori will start his summer session of school in a couple of days. Wynnie will be taking the summer off and relaxing at home. Ben and Alex are in "mami school" and according to Ben it's torture. We bought them 5th grade curriculum books and are doing about 1-1.5 hrs of work Monday- Friday. After grading their work then they are free to play for the rest of the day.  Honestly it's not fun for Chris and I also but hopefully all our efforts will get them ready for the 5th grade :)

We have caught World Cup fever cheering on our 2 favorite teams. The games are always more fun when you watch them with others... For the USA games we've gone to Buffalo Wild Wings with our friends and for the Colombian games we've gone to the Colombian restaurant in Carrollton. It's been fun and the boys have really enjoyed it!  Today we'll be watching the Colombian game at home.

 Dori was trying to wake up Wynnie from his nap to no avail. 
It's hard to take a serious picture with these two crazy boys. 

No jitters for Dori on first day of summer school :)

Tuesday, June 3, 2014

Happy Boy

Wynnie is doing great... Reacting  well to his new fancy bipap at night, on his regular humidified oxygen compressor during the day and overall in great spirits. I think he missed his home and his brothers. He is wearing his smile and "party hat" today (borrowed from Ben)

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!!