Home Was Short Lived

I'd been meaning to post all week to say we made it home. Staying on top of Mason's pain and nausea meds every 4 to 6 hours in addition to his other regular meds, trying to keep Mason comfy (he's still seemed to be in a significant amount of pain most of the week), catching up on things at home, doing homework and running kids to all their sports etc.....didn't leave me much time to post, but I should have! Because, last night Mason was readmitted to Primary's after just 4 days at home.


Friday I thought Mason was finally feeling a little more like himself. He took a short ride on his wiggle car around the house even! I was getting concerned though that he's still been needing oxygen, just a half a liter, but I didn't expect this to happen post spinal surgery. Even spreading out his OxyCodone doses further apart didn't seem to help his oxygen saturations. 

Early Saturday morning ((yesterday)Mason woke with a high fever. Bummer! A fever isn't something to ignore 17 days post a spinal surgery! After talking with Dr. W our pediatrician (Thank you for letting me bother you at home on a Saturday!!!) I took him into the Riverton Hospital for blood work and a chest x-ray. After receiving the results which showed an elevated white blood cell count and possible pneumonia in the left lung....Dr W and the transplant team decided Mason needed to be admitted at Primary's for IV antibiotics. 


Thus.....here we are again at the Hotel on the Hill! 


The only way to be admitted on a weekend is through the Emergency Department, which makes for a very long evening. We didn't get up to Mason's room until almost 2am after getting to the hospital at 7:30 pm! But, I will say the doctors in the Emergency Department that saw Mason last night were very thorough and concerned. While looking Mason over they discovered he had pus pockets in two different spots on his back incisions. This is probably more of the cause of the fevers than the possible pneumonia! 


For now Mason is being treating with 2 strong IV antibiotics and an IV anti fungal which should cover any lung and skin infections. Tomorrow Mason's orthopedic doctor will come by to look at his incision and decide if anything more aggressive needs to be done about the infection. Hopefully just a couple of days on IV antibiotics and then transferred to oral ones so we can go back home.


I'll try to update again tomorrow. 

Day 13 at the Hotel on the Hill

Yes it is true, Mason is still here recovering on day 13 post back surgery. But, this still hasn't surpassed the time we expected. Mason likes to take baby steps and even sometimes backwards steps. The good news is since my last post all of Mason's baby steps have been forward positive steps towards getting us home!


The cough assist and suctioning has really helped get most of the junky secretions moving and out before they made is lungs sick. Although, Mason has absolutely hated these treatments and begins to cry as soon as the respiratory therapists come in the room! It's so sad! I will say though, even though he gets upset about the treatments he completely cooperates. He just wants `me to hold his hand. What a trooper!


He is coughing much better on his own now, so today we are doing a trial day without any respiratory treatments. If he does well without them, then we may be looking at going home tomorrow! Shhh....I don't want to jinx myself!


Mason is still needing about a 1/2 liter of O2's. The hope was to get him back to his baseline of room air during the day before we went home, but if we have to go home on oxygen then at least we'll be home where he will heal faster anyways. And he'll be out of the hospital not picking up new germs! The docs are thinking the need of O2's is probably the combination of this nasty cold and cough that came on after being on the ventilator and him still needing to be on OxyCodone round the clock for his back pain. The OxyCodone  can be causing him to not take deep enough breaths because of feeling drowsy.


As for the back surgery.....Mason is recovering well. Still seems to be in pain, thus the need for round the clock pain meds. Twice a day with the physical therapist he has taken 40-50 steps with his walker. They are slow baby steps and he acts like it hurts, but he does it! What a champion! Hopefully at home he will be more motivated to get up and move around.


As for his healthy heart that we are so very grateful for.....everything has remained very stable though all of this. Mason had an echo on Friday and the results were great. His heart function is beautiful and very healthy! Hooray!


Thank you to Daddy and the kids for all of the fun visits, to those who have brought meals into our family, the sweet gifts and letters, help with carpools, and most importantly all of your prayers and concern.

Hospital Happenings

What's been happening here at the hospital since I last posted?


Saturday evening Mason was transferred out of the PICU and up to the third floor! Great step forward!!!


Mason's had a rough time finding the pain meds to keep him nice and comfy. He's just so tolerant to pain meds. Poor little guy. 


By Sunday he stopped having fevers!!! Yeah!


By Monday we seemed to have Mason's pain under better control, but he's very drowsy from all the meds. 


Being drowsy has made it rather difficult when he's needed to work with physical therapy, but he is still making progress. Baby steps right?!


Yesterday he sat up in a wheel chair 3 times for at least 30 minutes! And he looks so tall now!

As you can see, Mason was not too happy about getting into the wheel chair. But, he is so strong and he did it!

It definitely tired him out and he took a little snooze right in the wheel chair. Of course he had his little squirt gun with him for self protection!


Besides getting Mason to sit up in the wheel chair, Physical Therapy has tried to get him to bare weight on his legs and walk a little, but he hasn't cooperated very well with that yet.


Mason's respiratory junkiness had been much better for a couple days, but then last night got worse again. The docs and I can't quite figure out the cause of the setback. 


The respiratory therapists have been coming to our room to do "cough assist" treatments several times a day since last night. It's almost like a vacuum that sucks coughs right out of poor little Mason. He hates it!! But, it seems to be helping. I do think part of the problem is that he's still sore even with all the pain meds so he's hesitant to cough on his own.


Please pray that Mason's respiratory system can clear up and that his body can continue to get stronger so we can go home soon!


Here's a very tender sweet quote from Ronald Rasband's LDS General Conference Talk:
“A perfect body is not required to achieve a divine destiny. In fact, some of the sweetest spirits are housed in frail frames. …"

One Brave & Tough Little Boy

Sorry for not updating yesterday. For the most part Mason is doing okay with just a few little bumps in the road. I will say though, Mason continues to be one very tough and brave little boy!  The most positive event was that Mason was able to be extubated yesterday morning! He is still in the PICU and I foresee it'll be a couple more days before he is able to move to the third floor.


Wednesday night about midnight the docs got concerned about Mason's RBC (red blood cells)   being too low. It was surprising because we were told that he hardly lost any blood during surgery. Also, it shouldn't have any link to his Parvo virus/red blood cell issue from earlier in the year because his RBC count has remained stable since February. Finally by 2 or 3am it was decided that he needed a blood transfusion. Of course that is never an easy decision for a heart transplant kiddo because of the risk of introducing new antibodies that could fight against his heart. The doctors all concluded that the need at this time outweighed the risks.


Mason also began fevering Wednesday night. This can actually be very normal with any surgery, especially anything dealing with the spine. But, Mason's white blood cell count was also quite high. Slightly elevated WBC is normal after surgery due to stress and inflammation, but as high as Mason's was (26) there was concern of infection. That being said..... blood cultures, a protective brush sample from his airways, and a viral panel were taken to test for any infections. So far they all came back negative except for the brush sample came back positive for Viridans Streptococcus (a bacteria from the Strep family) and Staphylococcus Aureus (from the Staph family). Of course, right?! He is getting strong IV antibiotics to hopefully get rid of these yucky germs go into his lungs.


Trying to keep Mason comfortable has been tricky. His resistance to pain meds is rather high. What do you expect from a little boy that has taken meds such as Morphine since he was a newborn after each of his heart surgeries?! He is on a few different meds right now for pain and anxiety. Controlling his pain is key not only in keeping Mason comfortable and able to rest, but  also in enabling Mason not to hurt when he coughs. Being intubated along with the extra fluids one's body holds on to post surgery almost always makes Mason have an irritated and junky upper airway. Thus coughing up these secretions is important. Due to his junky airways Mason is still on oxygen, but that's okay if this it was his body needs to rest and recover.


Thank you for your prayers, love, support, and meals for my family at home.

Resting

Mason's surgery finished at about 4:30 today and then was taken to the PICU. We spoke with Dr. Smith who said the surgery went well and then at 5:00 we were able to see Mason.

He is still intubated (on the ventilator) and will be for the rest of the night. The docs left him intubated because of the sedation and pain meds which can sometimes cause kiddos after surgery to not breath deep and efficiently (especially kiddos with Mason's history).

The plan is to extubate in the morning after he gets a good night's rest.

For the most part he is doing well. The docs are just trying to find the "happy" dose of pain and anxiety meds. A couple times tonight it was very sad for me to see him try to ask for something, but couldn't talk because of the breathing tube, so tears would run from his sweet little eyes. And I'm sure some of tears are also due to being uncomfortable. I would be uncomfortable with two incisions in my back!!! As I said, they are trying to find the "happy" amount and combination of meds....which isn't always an easy task with Mason. He is very pain med resistant.

For those of you haven't followed Mason for the last few months, today Mason had the Vertical Expandable Prosthetic Titanium Rib or the VEPTR placed in his back. And this is because of his scoliosis that continued to get worse over the last 6 months. Poor little guy hasn't been through enough right??!! The major concern was that the curve (of 75%) was going into his only good lung and would sooner than later start to affect his pulmonary output. We also hope this will help him feel better balanced and have more confidence and strength in his walking. 

Here is a picture (3 x-rays put together) of Mason's new hardware:

 

top of Mason's spine 






















I think he'll give the airport security a run for their money the next time we fly anywhere!!


Thanks for your continued prayers this day and throughout the rest of Mason's recovery. I will update again tomorrow. Good Night!

Surgery Started

Just a very quick update.....

Mason was taken to the OR at 1:40. NO tears from the little guy even. With a little help of Versed given about 15 minutes before to help with any separation anxiety, he let the anesthesiologist take him into the OR riding in his favorite hospital mode of transportation, a wagon.

At 2:50 we got an update that it took about an hour to prep him, get an IV started, and an ART (arterial line used to monitor blood pressure) placed. Then at 2:40 the initial incision was made to begin the surgery.

The surgery should take until about 4:30. At that time Dr. Smith will come and give us a final update. Hopefully soon after that we will get to see Mason in the PICU, where he will be recovering.

Thank you for all you kind thoughts and prayers!!! I will update again this evening.

Happy 2nd Angel Heart Birthday!

 Today we celebrate one of the most special days our family will ever experience! Two years ago Mason received his Angel heart from a very special anonymous donor. Although we've never been able to learn the name of Mason's donor or anything about their family (because they have chosen to remain anonymous) we hold a very tender spot in our hearts for them and ALWAYS will. On the day they sent their baby to heaven our Miracle Mason's life was saved. I feel there is nothing more selfless than this!


As most of you know Mason's special transplant day was on Easter which seemed to be a miracle in and of itself! Easter will always have even greater meaning to us now. I want to quote myself from that day, "The most tears I have shed this day are in gratitude for our donor family. On this Easter morning they had to say goodbye to their sweet child. They donated their child's heart on Easter almost like our Savior sacrificed his life for us. He then resurrected on Easter just like our Mason has been given a new chance at life this day. I will be forever grateful to this family and pray that they will know of the joy they have brought to our family. I pray that on each Easter they will think of the gift of life they have shared with our family!"

I often wish I knew more about Mason's donor, but maybe someday we will when the time is right. Today we will send balloons into the sky in honor of this special child and their family. I hope our special donor will look down from Heaven and see his/ her balloons. I hope he/ she will feel of our extreme love and gratitude. To this amazing family, who thought to donate in a time of sorrow, I will feel always in debt to you for what you did for Mason and our family. Thank you!

(Notice Mason's shirt says,

"Property of Stanford")

Since Mason's heart transplant he has sure come along away. He still takes his time and goes at his own pace on certain things (like eating and walking), but the progress he has made is fabulous! At two years post transplant and at age 4 1/2 what is Mason up to?

~Walking with his walker or holding on to some one's hand

~Standing alone for up to 1 minute

~ Riding his plasma car (or wiggle car) all over the house and yard

~Throwing balls (baseball, football, lacrosse, etc....and he's got a GOOD arm!)

~Playing policeman (loves his guns, and sleeps with them lately)

~Working with his therapists and teachers that come to our house (He asks every morning, "Mom, is my teacher coming today?" He loves their visits)

~Playing on the ipad and leapster

~Still eating just snack foods....chips, pretzels, & popcorn being his favorites (tube feeds still give him the majority of his calories)

~Talking a lot!!! (especially at night when he doesn't want to go to sleep)

~Being a good sport about blood draws every 7 to 14 days still and echos every 2 to 4    weeks.

~There's much much more.... 

The above is just a short list to show how far Mason has come since he received his gift of a new heart and a 2nd chance at life here on earth. Before his transplant Mason was very weak and sick. Now he is a little boy full of energy who enjoys life to the fullest. Mason has taught us all how to find the silver lining in life and to dance in even the strongest of rain storms! To him I am grateful for all the lessons, to my Father in Heaven I am grateful for the strength to endure the bumpy road, to all of Mason's doctors, nurses, and caregivers I am grateful for you and the very important roles you have played and continue to play in Mason's journey, to all those who serve our family in times of need I am grateful for all you do, and most importantly on this day I am forever grateful to Mason's donor family! I pray that as this time of year is especially hard for their family remembering the loss of their baby that they will feel the comfort of our Heavenly Father.

One more event that also makes this a special week at our house is Preston's birthday. Preston will be 11 tomorrow!!! Wow how time flies! Preston, my second child and oldest son, is one very good kid! Preston is a great student, a good helper, a kind brother, an up and coming lacrosse star, an amazing skateboarder, and we love him so very much! 

HAPPY BIRTHDAY PRESTON!

Happy Easter to everyone from our family to yours! May you have a wonderful day!


My next post will probably be next Wednesday as Mason goes in for his back surgery.  Please pray some extra prayers for him that day.

Just One Day At A Time.....By the Inch It's A Cinch!

The date is set for Mason's back surgery..... April 11. It is just right around the corner!! I am nervous, but at peace knowing it is the right thing to do. The surgery should take about 2 hours. The recovery time.....well that's another story! An otherwise healthy child going in for this back surgery would probably have one day recovery in the PICU, 2 or 3 days on the 3rd floor surgical unit, and then home. But, with Mason things will be different. The orthopedic surgeon and the cardiac transplant team are guesstimating several days to a week in the PICU and 10 to 14 days total in the hospital. So I am planning on at least two weeks at the Hotel on Hill. An earlier release would be fantastic, but I won't be overly hopeful for that.....just pleasantly surprised if it does happen!

Mason's transplant doctor at Stanford has had a couple of his patients also go in for this same back surgery and his words were, "the recovery wasn't easy but definitely worth the outcome." I completely appreciate his honest words to help us prepare for what lay ahead (and we all know Mason takes his own recovery route anyways....nothing by the book for him)! I am praying and hoping for the best recovery possible. I also am praying the outcome will be very worth it so that my little Miracle Mason will be running around this summer with the rest of our kiddos. 

(Mason is hoping for some good luck 

 and lots of prayers on April 11 !!)

This Monday, April 2, Mason has a check up at transplant clinic to make sure everything looks good before his surgery. Praying for no obstacles!!!

April 4 is Mason's 2nd Angel Heart Birthday! Wow! Has it really been 2 years since his transplant?!! I will try to do a post that day to help us celebrate and remember Mason's special day, as well as honor our donor who I never go a day without thinking about.

Kaitlin and I had the opportunity to go to the annual Young Women's Broadcast at the Conference Center in Salt Lake last Saturday night from which I have a new favorite quote to share:

"'Seek heavenly guidance one day at a time. Life by the yard is hard; by the inch it's a cinch. Each of us can be true for just one day — and then one more, and then one more after that, until we've lived a lifetime guided by the Spirit, a lifetime close to the Lord, a lifetime of good deeds and righteousness. The Savior promised: 'Look unto me, and endure to the end, and ye shall live; for unto him that endureth to the end will I give eternal life' (3 Nephi 15:9). ~Thomas S. Monson

We love ZERO.....

Mason's biopsy came back a big beautiful ZERO! Hooray for no rejection! Mason did have a bit of trouble recovering from the cath and anesthesia. He couldn't quite keep up his O2 sats over 90 on room air. Most likely this trouble came from his recent respiratory illness. The docs were concerned enough that they kept us there overnight on Friday. 


I made a deal with the transplant team though. If they wanted to keep us over night I requested that Mason get his IVIg treatment, that he was scheduled to come back for on Monday, while we were there Friday night. They agreed and saved us a trip back to Primary's on Monday for the all day treatment! So, although it was a bummer we had to stay the night at least we made a "2 for 1" visit out of it. (The IVIg treatment is a follow-up treatment still trying to get rid of the Parvo Virus that was killing off Mason's red blood cells. He will need at least one more in 4 weeks.)


By Saturday morning Mason was satting 97 on room air. He just needed a little extra time to recover. When we finished the IVig infusion we headed home in the afternoon yesterday. Thank goodness for ZERO rejection and just a short little overnighter at "The Hotel on the Hill"!


Because Mason's biopsy came out clean and his heart function is good, we will probably be moving forward with his back surgery soon. I will call the orthopedic doctor this week to further discuss the surgery and details with him.


Have a great week! Thank you for all your prayers!

300,000+

A little over a week ago Mason's blog hit 300,000 visits. I believe that is since June of 2010 (when I think I added the "site meter" to the blog). As of today Mason's story has had 301,562 visits. Wow! That is a lot of love and support from ALL of you! Thank you for your continued care, concern, and interest in our Miracle Mason's journey.


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.....

MASON

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.....

( In the above picture you can see the
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