Hope for Max

Power chair prayers needed!

I wanted to let everyone know that Max continues to do FANTASTIC!  He is blowing his therapists away.  Next week we plan to begin the therapies out of the home (e.g aqua therapy...yea!).  Our new night nurse is doing well and even managed on her own last night, which meant Aaron and I got our first full nights sleep in over 2 weeks (yea!). 

Now for the serious part...Max's power chair is currently in physician review with Tricare.  We are praying that it gets approved, as the appeals process can be long and drawn out and we would like Max in his chair as soon as possible.  I could go into a long explanation about how power chairs are vital for appropriate development for the physically handicapped, but I won't because you would like to finish this post before tomorrow.  It would literally be his legs and children learn so much from exploration.  Please, please pray for a positive outcome.  This chair costs roughly $25,000 and our mobility van will run about $60,000.  Needless to say the chair being paid for by insurance is important for us to be able to afford the van to transport it.  This chair will open up a whole new world for Max.  Aaron and I have witnessed the difference with other children who already have a power chair.  We want Max to have the same opportunity.

Now for the funny part... our case manager cited one possible reason for denying the chair is the parental controls on the back so that Aaron and I can operate the chair.  Basically, they think it means that we will be moving the chair, not Max.  O.k., I'm gonna do something crazy here and be a little logical.  How many parents of able-bodied children allow their children to run wild in all locations and under all circumstances (e.g  church, airport terminal, the road).  How in the heck am I supposed to stop a 300 pound chair from going into the road?  Of course there will be times it is necessary for Aaron and I to control the chair!  We cannot control the chair the same way Max does as the controls are very sensitive and designed specifically for Max.  With our touch we could actually break the controls.  So next time you are with your child or grandchild try just telling them to stop without ever physically intervening and let me know how that works out for you...especially if they are a two-year-old.  Obviously, Tricare's kids are much better disciplined than mine.  Shame on me for my poor parenting skills.

O.k. enough venting...I will let you enjoy the rest of your day and I am going downstairs to enjoy Max's smiles!

River Dog game for MDA

On Saturday, May 9th the RIver Dogs have joined with The Sunshine House (local pre-k) to hit a HOMERUN for MDA.  The pre-k classes will be "hopping" on the RIver Dogs field before the game and making a check presentation to MDA between innings.  You can go to your local Sunshine House (they are all over Charleston) to purchase pre-sale tickets.  For every ticket purchased from the Sunshine House $3 will go to benefit MDA.  To find your nearest Sunshine House contact Micky Stylinger at (843)871-0822. 

Aaron and I hope to have Max at the game.  This is a great opportunity to have some fun for a good cause.

When:  Saturday, May 9th

Game Time:  7:00pm

Where: Joe Riley Stadium

What a beautiful day!

I am beginning to enjoy the fact that there is very little to report.  Max is keeping his oxygen up very well.  He is now on the Bi-Pap for night-time and nap-time.  We are still keeping his schedule pretty low-key.  Today we got crazy and ventured out in the yard for a little while.  Max is keeping busy with his cars, playing ball with Mommy and Daddy, and laughing at his new Jack-in-the-box (Thank you Audon! Max LOVES it!). 

We are also trying to wean ourselves from the pulse/oxymeter that keeps track of Max's oxygen levels.  You really begin to become obsessed with the machine to the point you quit looking at Max.  We can tell if and when he is struggling by the way he looks.  It's time we start relying on our own instincts.  Max is still wearing it most of the time (right now we are a bit rogue and letting him have it off for a little while).  After tomorrow we will have one week with no "de-sats."  That is a big milestone for us.   

Another Day...Another Smile

We continue to be amazed by Max's recovery.  He sat in his chair twice yesterday and spent almost 8 hours off his bi-pap (not all at once...take a breath grandparents and medical professionals).  He is smiling and laughing and basically just loving life.  He is chatting again and is even talking in his sleep!  We continue to be cautious, but Max's disposition is infectious (the only infection we want to see).  I really think that Max loves to prove everyone wrong, I'm not really sure where he gets that from ;-)!  This recovery is such a blessing.  The turn of events when compared to last week is still mind boggling.

Our new night nurse started last night training in the evening and hopefully will be back this evening (if we didn't scare her off).  She seems very nice and has worked with disabled children before. 

Anyway, I know people start to get nervous if we don't post or update regularly, so we just want everyone to know that things are going well. 

A Word of Thanks!

Even though we are far from "out of the woods" on this particular illness with Max, we wanted to extend some well deserved "Thank Yous" to everyone that has been involved with Max.  Rather than listing individuals (because invariably we would forget SOMEONE) we wanted to say "Thank You" to all of the awesome nurses in the PICU at MUSC, the attending doctors and residents at MUSC, the numerous therapists (respiratory, physical, occupational, and speech) that work with Max (both at MUSC and at home), all of our friends and family, our home nurse, all of Aaron's co-workers and their families for the help and support they've given all of us, and the rest of you that may not fit into any of the above categories, but please be rest assured each of you have meant so much to all three of us and we wouldn't be able to do what we do on our own. We appreciate all of the emails, comments left on Max's website, thoughts, and prayers that Papa's little "Superman" continues to generate - even from people we haven't even met before.  Thank you all on behalf of Aaron, Traci, and most importantly Max!

So far so good!

Well, after an eventful and exhausting Sunday, Max had a fantastic Monday.  Max was able to maintain his oxygen saturation (sats) all day with only 30% oxygen assistance.  We ended up even giving him 2 hours off for bath time and his evening respiratory treatment and he did well.  This morning he is sitting in his chair, coloring, and watching tv without his bi-pap on (he likes to multi-task much like his mommy and daddy).  We aren't pushing him too much, but he is excited about the prospect of a change and it has been so nice to get him out of his bedroom (even though THAT was such a welcomed change from the hospital).

Max is a smart little guy and he knows what he needs.  In the hospital he didn't want us to remove his mask for his bi-pap.  He knew he wasn't ready to breathe on his own.  Now he wants us to take it off. This is such a big and important step for him (and us)!

A few more good days and we will probably release hospice.  Unfortunately, with hospice in the house Tricare will not consider his power chair or any more equipment for Max.  We are already behind and Tricare is already looking for reasons not to approve the power chair. Yep, that's a BIG suprise (a hint of sarcasm there).  When it comes to insurance they don't differentiate between hospice for children and hospice for adults - it all falls under the same rules even though any child with a terminal illness is eligible for hospice.  There are some kids that have been on hospice for several years.

Now it's back to the fight.  Max is definitely doing his part.  His recovery is nothing short of miraculous given the prognosis from the doctors.  Now Aaron and I must continue do ours.  We cannot and WILL not let insurance define Max's quality of life.

Bump in the road

We knew it would happen at some point.  After a great weekend Max had his first "de-sat" on us last night at bedtime.  Max started to drop a little in the evening (low 90s).  By 8:30pm he was getting into the 80s.  We used his cough machine to help, because we could tell he was a little "junky" in his lungs.  By this time he was getting fussy which wasn't helping anything.  I gave him some anxiety medication to help calm him down.  Unfortunately, it takes 30 minutes to take effect.  He then dropped into the 70s.  We cranked up his oxygen going to his bi-pap and then took out theh ambu-bag (which is attached to an oxygen tank) to give him some good breaths.  Then we deep suctioned him (you take a catheter tube and stick it down his nose and throat to suction any mucus plugs that might be blocking his airway).    He started to come back up.  By this time we called the Hospice nurse (actually Kristen did that) to make sure we were doing what we were supposed to do.  We also gave him a little morphine to assist in helping him calm down after another de-sat an hour later.  We finally got Max calm and to sleep around 10:30pm.  Aaron and I have seen all this done many times at the hospital, but it was the first time we ever did it all ourselves.  Thankfully Max's lungs sounded pretty decent.  Believe it or not we were pretty calm through the whole thing. 

Max woke up this morning chatting and laughing.  When we asked if he slept well he gave an emphatic nod and huge smile....the little stinker.   

Here's your pic Chuck!

Here are some recent pics from the hospital.  We promised one of our favorite Respiratory Therapist, Chuck, that if he sported the bunny ears we would post it on the website (or maybe we threatened to do it...it's all kind of fuzzy now).  The pic of Max on vent is the last time when they put the tube through his nose.  The last pic is of Max with his new Bi-Pap mask.  We ordered this yesterday and it arrived today...THANK YOU SMA SUPPLY.  This is a good alternative since he is wearing his mask all the time right now.  It gives his little face a break.

 

 

Saturday

Just wanted to let you all know that we arrived home Friday evening via the medical transport.  Max is situated in his room and has been doing remarkably well.  We have had no de-sats since arriving home and Max is in good spirits.  We are weaning him from his oxygen and pressure settings on his bi-pap VERY slowly.  The key is to see if he can manage as we begin the weaning process.  On Wednesday, we walked Max as close to Heaven as we could get him and he wasn't ready to go.  Today he is smiling, laughing, and playing with his toys.  We continue to follow his example of hope and perseverance. 
 
We are covered under hospice now and we'll be meeting with the case worker tomorrow.  Our insurance has been very helpful in assisting in this process (typical hospice benefits don't really apply to children, as that is not what it was set up for).  We even get to keep our nursing care, which was a point of contention.  However, our night nurse has decided not to continue working for us.  Our day nurse will be in for work tomorrow and during the week.  
 
Thank you so much for all the kind thoughts and prayers, notes and messages that have been left for us.  Aaron and I are so appreciative of the support.  We wish that we could respond to each one personally, but they have literally been flooding in from those we know and those we have never met.  Max continues to touch lives everyday.
 
Peace to you all...

Wednesday

Max did not have as good a day as we hoped for yesterday.  He is currently on his Bi-Pap with 80% oxygen.  We had two episodes yesterday, where we were ready to say good-bye, but Max decided he wasn't ready just yet.  This kid is a force of nature.  We will see how today goes.  We are meeting with a hospice group this morning who employs pediatric nurses.  Depending on what they say if we can get his oxygen needs down we might take him home and see if the home environment will help him to get better.  He did have a great night and we still have lots of hope that Max will recover from this situation.