As If We Didn't Have Enough On Our Plate....

Seems we aren't out of the stormy season of life yet.  Usually, I post about Michael.  But not this time....

I should start with a tidbit of history.  Chase has something called Mild Pectus Excavatum.  In layman's terms....  it means that the right side of his chest is caved in.  We had it checked last back in 2007 at Brenner's and all was good.  It was mostly a cosmetic issue and as long as he didn't start having any pain or other symptoms it just needed monitored.  Year after year all has been well.

In February, Chase decided he wanted to run track at the small school he attends.  I took him for his sports physical and before we knew it we were sent for a stat chest xray because Chase told Dr. Gunn he had trouble breathing sometimes.  Xrays "seemed" ok, the only abnormality was he had a healing fractured clavicle on the left side that we didn't even know was there...  Odd.  But she said it wasn't hurting anything and signed off on track.

The very next day, a Friday, was his first track practice.  After he ran he was sitting in the grass and he suddenly couldn't breathe.  He texted me, then I got a phone call to come get him.  I raced over and got him and he was still having a lot of trouble.  So, we went straight to the urgent care up the road  Another round of chest xrays were done and the doctor there again said the chest xray itself looked fairly ok, but did say that he would benefit from being seen by someone who specialized in chest wall abnormalities.  Monday I took him back to Dr. Gunn who agreed.

One week later, March 11, we went to Phoenix Children's Hospital and met with Dr. Egan, a pediatric thoracic surgeon who specializes in Pectus Excavatum.  After a VERY thorough examination, Dr. Egan explained that Chase's 2+ inch growth spurt in the last year appears to have shifted his chest wall a bit, likely causing the fracture and potentially putting pressure on the right lung making it difficult to breathe.  He said it was time to consider surgery.

(You can see the bone broken off...  as well as another area that looks like a previous fracture)

The plan currently is to have all testing done to get a good picture of what his chest looks like inside.  He is scheduled for xrays of the ribs, CT scan of his entire chest and abdomen, MRI of his spine, echocardiogram and EKG, cardiac stress test, lung function test, and a series of 3 metal allergy tests (the surgery involves metal rods in his chest - ouch!!).  These are all being done during the month of April.  And, once all of these things are done and results are in they will have us bring Chase back to go over it all and put together a surgical plan of attack to correct it.

We are hoping they will agree to hold off on surgery until after school lets out May 22nd.  This surgery will require 4-6 days in the hospital and 6 weeks of NO activity for him....  good thing he likes his electronic games!  As much as we hate to ruin most of his summer, it is too hard for a high school kid to miss that much school and catch back up, especially at the end of the school year.

Honestly, Chase is handling everything like a champ and seems ready to just get this done.  Dr. Egan asked him how he felt about it all and Chase replied "I don't care what I look like...  I just want to do things I like again without collapsing".

Chase is going to miss a lot of school for all of these appointments, and then he's facing a painful surgery with a long recovery.  I'm sure it sounds like a broken record...  but we ask for prayers for Chase through it all.

I truly don't know what God has in store for us...  but I know His plans are WAY better than ours, and I believe that we will see His unfolding and our story of surviving the storms will encourage others!

Infusion Day

While we wait for UCLA,Michael's neurologist decided to try an IV infusion to break the cycle of headaches, atypical seizures, etc that he has now been in for more months than we can count.  The idea was to at least help him feel a little better and function a little better.  They ran a series of IV meds....   Zofran/Benadryl to be sure he didn't get sick, Decadron to reduce the inflammation in the brain, Depakote to help with the constant migraine type headache AND it's to help with any possible seizures we can't see, and a ton of fluids.  .  Unfortunately.... it didn't work and actually was feeling a bit worse after.  Not the result we wanted.  

After talking to the infusion nurse manager who is very familiar with Michael, we are all are in agreement that UCLA is the next step.  Unfortunately, we are still $1500 shy of being able to go and we are facing the decision to reschedule yet again.  Michael is feeling defeated and worn through it all and it kills me to watch him suffer and not enjoy things that we all take for granted. 

Please keep praying....  for Michael's health, for financial provision so that we don't have to reschedule, for us as his caregivers, and for the doctors that he sees.  Also, please continue to share this link for others to pray with us and if they feel led to help us get there.  

28 More Days till UCLA!

This week has been full of ups and downs.  The downs are just more of the same...  Michael feeling just weak, tired, etc. etc. etc.  I'll spare you those details and focus on the ups!

One of Michael's closest friends, Alan Jones, flew in to spend a few days with us.   Saturday, Alan and I were determined to get Michael to a Reds spring training game.  I'm happy to report we DID it!  Alan and I walked Michael through the crowd straight to his seat.  Anything Michael wanted we brought to him.  He was able to enjoy the entire game, even though Reds lost!   Poor guy was exhausted after the long walk back to the car, but it was great to see him out and enjoying something he loves! 

Sunday morning we let Michael sleep in while we all went to church.  Afterwards, we had friends over to visit and catch up with Alan too.  Alan manned the grill with Michael's supervision while we all chatted and enjoyed the perfect weather!    

Monday, Michael got some much needed rest in the afternoon while Alan took the kiddos out for the afternoon.  Monday evening we all were able to go out to dinner, then went to Paige's first softball game ever.  She was nervous, but ended up doing a great job and their team won 15 to 12!  Gracious I forgot how uncomfortable metal bleachers are to sit on for hours at a time!  LOL! 

28 more days until UCLA!  Still have a long way to go to get there.  Praying hard we don't have to reschedule again.  

Thank you for all of the love, messages, hugs, donations, and prayers!  

Weekly Update

I'm trying to do a better job of updating weekly....  
The last week we saw Michael's primary care doctor for 3 month follow up and labs and his then his neurologist on Monday,  Since last Tuesday, he has had a bit more trouble with balance, dizziness, headaches, and just feeling "funky".  He described it to Dr. Saperstein (neurologist) as "numb...  almost like a floating feeling".  They aren't really sure what's causing it.  The neurologist did a quick autonomic test yesterday morning in the office to rule out it being a flare of his dysautonomia, and sure enough that was not it.  I asked specifically if it could be related to CTE and they really can't tell us....  they just aren't familiar enough with the disease.  Just need the input from UCLA.

Michael has continued to not let it totally keep him down.  He went with me to the softball field Saturday to practice with Paige.  After about 10-15 minutes I sent him to the dugout while Chase and I continued to practice and Michael just coached all of us from the dugout.  It was good to get out of the house for a while!  Michael's family is coming the first week of April and that will certainly lift his spirits too!  

Michael's appointment at UCLA is in 4 weeks and we have a long way to go financially to get there.   Again, thank you all for loving us through this journey...  financially, messages, hugs, and prayer!