In the last few weeks I feel like a lot has happened. Once again, a good reminder to me that I need to update more often! Then my posts won't have to be so long. I just never know where to begin.....
After Mason's hospital stay on February 6th and 7th his respiratory sickness got worse before it got better, but I believe he is almost over it now. The virus turned into bronchitis and possibly even mild pneumonia, thus 2 rounds of antibiotics later (yuck!!!) hopefully he's kicking this nasty bug. In the mean time everyone in our house got sick with either strep or bronchitis. "Tis the winter season'! At least everyone else gets over sicknesses quicker than Mason.
February 17th Mason had a follow up visit with Dr. John Smith, the orthopedic doctor. We had seen him at the beginning of October about Mason's scoliosis. At that time Mason's curvature was 60% and the hope was once he was walking around more it would lessen a little. Then at this visit we would get him fitted for a brace. Mason is walking with his walker all the time and has taken a couple steps on his own (soon he will do it!!). Despite Mason's progress with walking, the appointment didn't really go as planned. Mason's curvature (calculated by his x-ray) has worsened to 72%.....not good! Since the top of the curve goes in towards Mason's right lung, being his only good lung, this could really start affecting his pulmonary function. Dr. Smith says a brace probably wouldn't even help at this point (if anything, the compression of the brace may have a bad affect on his lungs) and that Mason needs to have surgery. This really wasn't what I wanted to hear! "Poor Mason, another major surgery" was my immediate thought!
Of course the transplant team would have to feel that this surgery is okay for Mason. Dr. Smith is so concerned about the severity of Mason's scoliosis that the very day of our appointment he called Dr. E from our transplant team at Primary's. The consensus of our transplant team here at Primary's along with Mason's transplant doctor at Stanford is that the benefits would far out weigh the risks. When we would go forward with the surgery will depend on how Mason's heart is doing. And it just so happens we already had his annual heart cath and biopsy scheduled for this Friday March 2nd (tomorrow). If all looks good, we could schedule to do the back surgery very soon. I'm nervous and scared! I know this surgery is not an easy one and the recovery will be longer for a kiddo like Mason than for a typically healthy child. (The surgery he needs to have is called the Vertical Expandable Prosthetic Titanium Rib or VEPTR.)
February 23rd Mason had a routine cardiology/transplant clinic. His blood work showed that his red blood cell has stayed in the healthy range so far since the transfusion and IVIG two weeks previous. Yeah! His echo showed good function, but a couple slight changes. The thickness of his heart has increased since his previous echo (his heart had gotten rather thick from his severe rejection in the beginning of his transplant, but with the tapering of his steroids this last summer and fall the thickness decreased significantly and has been in normal ranges for his last several echos) as well there was a small change in the relaxation of his heart muscle. What does this mean? Could be nothing or could be rejection! We will find out this tomorrow after his biopsy. In fact, because of Mason's recent respiratory sickness we most likely would have had to reschedule the biopsy, but because of the changes seen on the echo the transplant team feels its more important to keep our scheduled date and go forward with the cath and biopsy.
(Mason's annual cath and biopsy will be done at Primary's. Our insurance will not pay for us to go to Stanford's Lucille Packard Children's Hospital anymore for something that can be done here at their contracted hospital. I'm sad we can't go back and visit our friend's there, but am glad Mason's doing well enough to have Primary's follow his care.)
Please pray that Mason's biopsy and cath goes well. Please pray we will know if and when the right time is to do Mason's back surgery.
We were also supposed to finally see the sleep doctor about Mason's sleep apnea this week, but because of scheduling issues the doctor had to cancel. We hopefully will get in soon so we can address Mason's apnea better than just with the oxygen 'blow by' we are presently using.
FUN FAMILY STUFF
February 8th was our Braiden's 9th birthday!
A fun, eventful, and busy day of course. One thing he really really wanted was a hamster.....so he got to go to the pet store and pick one out! This is a big deal in the Strickland house hold. The only pets we've ever had are hermit crabs, beta fish, and water frogs. So this is quite a step up! I will say Braiden is doing a great job taking care of her, well except I'm not quite sure she likes going for rides in the remote control monster truck! Braiden also does a great job playing with and entertaining Mason. Mason looks forward to when he and Preston get home from school everyday!
Braiden's 9th Birthday
February 10th Mark and I had an enjoyable evening at an amazing piano concert. We were able to go for the second year in a row to Paul Cardall's annual Valentine concert. He is our very special heart transplant friend. We were also able to reunite with some of our dear "Heart Mom and Dad" friends at the concert. We look forward to next year's concert!
Our very own future concert pianist.....
hump in Mason's back from his scoliosis.)
February was our Ammon's 7th birthday!
We have a good friend who is a fireman in Alpine not far from our house. (Sometimes he'll stop by our house while on duty to say "hi"......and believe me, our neighbors get very worried about Mason when they see his firetruck parked outside our house. ) The last time he stopped by Ammon asked him if he could have a ride in the firetruck.....so we decided to save that ride for Ammon's birthday. And that we did! We were able to celebrate Ammon's birthday at the fire station. Ammon had a very fun and memorable birthday! He hasn't stopped talking about it!
Ammon's 7th Birthday
(Mason was so excited to go to the fire station,
but as soon as we went out to see the firetrucks
and ambulance he got really scared and wouldn't
go near them. Maybe he actually remembers his
ambulance and life flight rides! Who knows?!)
I will update with the results from tomorrow's cath and biopsy hopefully on Saturday. Thanks for your support, love and prayers.
I want to leave you today with one of my favorite scriptures:
"Whatsoever thing ye shall ask the Father in my name, which is good, in faith believing that ye shall receive, behold, it shall be done unto you." ~Moroni 7:26