Tuesday, April 23, 2013

Next step -- HOME!!

Early last week Wynnie was moved out of the ICU and down to the regular respiratory floor at the hospital.  He has managed doing well without the use of any help with oxygen when he is wide awake and playing. But when he takes naps and when he sleeps for the evening he keeps his levels comfortably on 1/8 liter of oxygen.

The goal of him this week is to tolerate eating BY MOUTH and maintaining a soft tummy.  If he can handle eating/drinking on his own without creating more GI troubles, then the goal is for him to come home this upcoming weekend.  Today for the first time I fed him a 4 ounce bottle of milk.  Aw!  Just like old times ; )  It took him 45 minutes but he was able to successfully drink it all up and then have a bowel movement -- so both really good signs that we will continue to encourage him to do.

Ben and Alex are taking their state mandated STAAR today and tomorrow.  The were excited and wanted to be the first ones at school today.  I know the teachers have been working hard to prepare them and I added a fear factor telling them that if they don't do their best, field trip privileges will be taken away next year since the state of Texas only gives field trip to "smart" schools.  Alex kept on saying "I'm so nervous!" during breakfast.  Nothing like scaring your children before a big test!!!

Dori's new trick while he was riding his scooter yesterday was to SING, WAVE and have his eyes CLOSED while he was zipping around.  His physical therapist is working hard at teaching him how to stop when he comes to a wall or to a door.  Yesterday I think Dori was tired of all the "stop please Dori" -- he drove his scooter all the way to his bedroom and just sat there.  Actions speak louder than words.  Now we just have to work on the whole "distracted driving" stuff and he'll be fine.

Looking forward of meeting our family goals for the week 1) do well on our tests   2) focus on eating healthier  3) getting Wynnie to come home.  Accomplishing 3 out of 3 will feel SWEET!!!!
When I saw this painting it made me cry!  For Dori & Wynnie's 1st birthday party, we did it in a Pinocchio theme.  Pinocchio wanted to be a "real" boy just like everybody else, but he was ALREADY a perfectly loved boy by those that truly mattered.. it just took him a while to realize it.  Just like the babies -- to others they may seem imperfect but to us they are perfect. 

Dori is always talking, singing or cracking jokes. 

Wynnie having his 1st bottle since MARCH 11th this morning!!!

Sunday, April 14, 2013

RSV Free!

My favorite red wiffle ball in the whole wide world!

You think you got gas?  My belly could fuel a rocket!

Who let this crazy woman in here that won't.stop.kissing.me. 

Thinking about very important things

Smiling about very important things

Smiling under the mask

Gimme a "G"!!!

After over an entire month, Wynnie's RSV swab tests finally came back negative.  It's crazy to think that the stubborn virus kept strong for so long in him and left Dorian so quickly. Wynnie continues to do well breathing through the vaportherm nasal cannula and has had it weened down 5 levels since he started.  The only area of concern at this point is the amount of gas he has accumulated in his tummy due to all the air that has been blown down for the past week.  His tummy has grown so uncomfortably big that they have placed him on 3 meds to help him release his gas.  I keep pulling his finger but that trick isn't work.  ha ha

The goal is for Wynnie to be well enough to leave the ICU by Monday or Tuesday and then transfer him down to the regular respiratory inpatient room.  From there it might be another week until he is well enough to go home.  Looking forward to having everybody under one happy loud roof soon!

A very nice social worker here at Children's gave our family 4 tickets to the Mavs game this past Friday night.  Dorian stayed with Chris and his grandparents at home while B&A and I painted the town.  I had fun on my double date with my dashing young men!

Wednesday, April 10, 2013

Wynnie gots the vapors!! : )

Wynnster continues to do well breathing on the vaportherm nasal cannula trials, and those trials have been increased to 2 hour blocks 4 times per day. When he's not doing his trials he's breathing on the bipap just fine.

This week's goal: ween him off the bipap during the daytime and have him breathe with the vaportherm nasal cannula. he may still need the bipap to sleep through the night.

The goal for next week: ween his vaportherm down 4 levels lower and move him out of the ICU to the regular floor. Once he's on the regular floor they aim at having him breathe without any assistance during the day. If he can't do that then he'd eventually go home with a cute little O2 tank backpack. If that's the case we are fine with that because he'd be completely mobile with it and I'd make sure to bling out his backpack.

Yesterday for the 1st time in over a month I finally got to hold Wynnie in my arms. It was perfect!!! He made my day with doing what he does best--snuggle.

Sunday, April 7, 2013

1 Month Later

Tomorrow Wynnie will have his 1 month anniversary here at the ICU. Not quite an anniversary worth celebrating at first glance but it's been a very sobering month for our family. We've seen our family and friends come together in prayer... Even strangers have added Wynn to their prayers through bible study groups and circles of faith our friends are in. We've seen the strong love and bond that Wynnie shares with his very vocal and highly inquisitive twin brother Dori ("Ninny!! Ninny!"). We've seen maturity in Ben and Alex (never complaining about why Chris and I are frequently gone to spend time at the hospital and they know when I'm emotional and need a hug). Most importantly we've seen what a fighter Christopher Wynn Johnson is!! His determination to come back home is evident on his persistence to get better, no matter what is thrown in his way.

Most people will see their kids grow up to become successful student athletes, caring community leaders, cure-finding doctors or rocket cruising astronauts. But at the small cute age of 4, Wynnie has given us glimpse of his life's purpose. He has brought us together and has endeared himself to everyone at Childrens that has come into contact with him. He has reminded us how precious and unpredictable life can be. He has shown us how scary the reality of his I-cell disease inevitability is.

But Wynnie is like that guy at the party whose friends are looking at the chairs being put away and they are saying "we better leave". Wynnie is having too much fun and knows this party is just getting started. I think he has successfully managed to throw the keys into the bushes and wants to keep on dancing!!

Since Friday's extubation he has been managing to breathe fairly well on the bi-pap machine. He looks like the cutest Darth Vader ever. Twice yesterday and once today he has been breathing well on the vaportherm cannula (o2 support through only his nostrils). That'll be the next goal for him to be able to go longer stretches of time on the cannula while his lungs continue to build up strength and heal.

Friday, April 5, 2013

Wynnie the Warrior

I can't tell a lie... I was very scared about what could potentially happen to Wynnie today during extubation. But thankfully God's plan was to make Wynnie prove once again that he has the spirit and armor of a warrior covering him!

The waiting room attendant walked over to us and gave us Wynnie's new room number in the ICU by noon. We quickly took the elevator up without knowing the verdict of how the procedure went, but I assumed if Wynnie is back in his room and they never came to ask permission to trach him, it must be a good sign that everything went ok!! But I didn't want to get myself too excited and Chris told me nicely that we can't assume anything and just hope for the best.

What a relief it was to see him breathing with his c-pap!! He was being cared for by 1/2 a dozen people and everyone was busy poking, measuring, squeezing and medicating him. By 3:00 Wynnie had grown tired of everyone messing with him. When he gets mad, his O2 levels plummet and his heart rate and BP go all out of whack and they were already talking about taking him pff the c-pap amd moving onto Plan B (not a good thing). He was wearing a BP cuff on his arm that was going off every 15 minutes, so just when he'd calm down, the cuff would squeeze his arm and he'd get angry all over again. I asked if I could take that off him and once the Dr realized that way too many people were not allowing him to sleep she used her authoritative voice and said "Everybody leave him alone!". All the nurses and therapists stepped back and within just a few minutes he stopped his nonstop crying and dsats and low heart rate all fixed themselves on their own.

Since he was so upset and didn't sleep practically at all, I chose to leave him alone and not hold him. On Monday it'll be exactly one month since I last held him... So I can't wait!!

Overall, Wynnie has held up well today as long as he wasn't agitated. Dr Morris said he still isn't out of the woods yet but for day 1 without the vent, we can put Wynnie in the "win" column. He is so tough and strong willed and he made us so proud today!

Thursday, April 4, 2013

Extubation moved to tomorrow (Friday)

Due to needing optimum staffing and morning O.R. scheduling we moved the extubation to tomorrow (Friday). Prayers are needed for Wynnie's big breathing day please!!

We thank you all for the gift of your prayers, the gift of your friendship... And most importantly the gift of Wynnie. We look forward to holding him and seeing the love and light in his eyes again!

“Every good gift and every perfect gift is from above, and cometh down from the Father of light” -James 1:17

Tuesday, April 2, 2013

New Infection from the Vent

Wynnie continues to do fairly well on his sprint trails to build up his strength.  The only time he d-sats is when he is agitated.  I don't blame him for being agitated and downright upset about having a tube down his throat and all kinds of yucky congestion.

Unfortunately overnight he developed a fever and his secretions from his lungs gave grown much thicker.  Labs will take about 24 hours for conclusive results but it's confirmed that he has a new bacterial infection due to the vent.  I asked Dr Morris (his main doctor these past 2 weeks) when do we reach the threshold of just yanking out the vent when we see that the vent is doing more harm than good.  She agreed that Wynnie may never be able to reach "optimal" levels on the vent to be able to remove it with confidence so we may need to reach a point over the next few days where the vent is removed, he immediately place him on bi-pap or c-pap support and then just hope for the best.

So over the next 24 hours he will be treated with a strong regimen of antibiotics and if he maintains well over the next day then we will extubate in the O.R. on Thursday morning.  Prayer warriors -- time to get your game face on and start praying for Wynnie to rock it on Thursday.... we need your help!

Not exactly how I wanted the week to go for Wynnie but he is obviously under much emotional distress on being here on that vent and we just want to give him the best chance to successfully move back to normal life.  Dori enjoys looking at Wynnie's pictures and blowing kisses on them from my iPhone.  It's so heartwarming!

    Trust in the Lord with all your heart and lean not on your own understanding; in all your ways submit to him, and he will makeyour paths straight.
    -Proverbs 3:4-7