Friday, July 31, 2009

Happy 20 months Miracle Mason

Happy 20 months to our Miracle Mason on July 30th . (Okay, I really did download these pictures on July 31, had full intentions of completing the post that day, but as usual, life was too busy and it is now August 7th as I sit down to hopefully finish.) Mason seems too little to be 20 months, and it really doesn't feel like it has been that long since out 'broken heart journey' began! Even though he is a little squirt he is quite smart.

He loves to hold the phone to his ear and say, "hi", he loves to throw things.....everything from the high chair, throw blocks into their container, throw hot wheels across the kitchen floor (maybe he thinks cars should fly since his third trip somewhere at only 3 days old was by life flight.....his first being when we brought him home at 2 days old and his 2nd was by ambulance at three days old as well!!!), and he also loves to sit out on our back deck which is above our walk-out basement, dangle his feet through the bars , and throw anything he can get his hands on out to the kids playing in the yard or down below. His newest play toy is his G-tube. He has figured out how to pull the tubing out from under his onsie where I have it hiding, open it up and then lets it leak as he scoots around the house! Yuck! I can't wait to get the button in on Sept 3rd.) He also takes empty medicine syringes and tries to stick them into his G-tube. He started doing this after watching me give him his medicine that way. (Then the other day I also saw Ammon stinking an empty medicine syringe into his belly button! I asked him what he was doing and he said "Ammon sick".)

Here's some cute pictures from the last month:

Kaitlin and Mason in the front yard on a Sunday evening

Mason out on the deck, his favorite hangout spot when its not too hot out.

We had our dear friends Scott, Amy, and Carter Gourley over for Dinner.
Carter is also a heart baby and he and Mason are 5 days apart. We
met them up at Primary's during our babies' first heart surgery.
We are grateful for their friendship

Braiden decided to entertain Mason one evening by pulling
him around the yard on a sled. Well, as far as Mason's oxygen
cord would allow. Mason loved it!

Here he is laughing and screaming. He wanted more
when Braiden was ready to be done.

August 3rd Mason had another cardiology appointment to up his Carvedilol dose and monitor his blood pressure. He gained another 4 0z, not as good as the last weight gain, but overall in the last 4 weeks since he got his G-tube he has gained 11 oz! Which is great especially for a little guy in heart failure. So now he weighs 16 lbs 11 oz! Way to go Mason!

We continue to be so grateful for each day we have to spend with our little Miracle Mason. He makes our crazy, busy, and many times chaotic life all worth it!

Friday, July 24, 2009

Good News and Not So Good News

Wednesday, June 22, we had our appointment with Dr. Everett , the heart failure/ heart transplant cardiologist. We had changed it from the 15th , because of Mason's fevers and hospital stay. The appointment was to up his carvedilol dose, do an ECHO on his heart, and talk with Dr. Everett about Mason's future medical plans. It was a day full of emotions.

The good news is.....Mason gained 7 oz since he got his G-tube!! And hopefully even more now (because now it is the 27th when I'm finally finishing this post).

The not so good news is..... his ECHO showed no improvement once again :-(
Each ECHO since April, showing him in heart failure, has made his need for a transplant more and more a reality. Then when we were sent home that day with a "transplant packet" (a thick stack of booklets and pamphlets about heart transplants) it really hit Mark and I that this is the path our little Miracle Mason is headed down. Even though I was pretty sure since mid June transplant was our next step, this meeting with Dr. Everett and receiving the packet of information filled me with a lot of emotion, mostly scared, but also a feeling of confirmation that this is TRULY what Mason's body needs to extend his life here on earth!!

What is the plan?

Mark met me at Primary's in time to meet with Dr' Everett that day. We had a lot of questions for her and we are very appreciative to her and her nurse Michelle for spending so much time with us. Emotions were high because she presented to us different being fore going transplant even if he can't have the Fontan (the surgery which would have been next if he weren't in failure) and just let him live until his meds and oxygen can no longer sustain his life....the other option is transplant.

Okay, for me there is no question about exhausting every last resort to give my baby a chance at life!!! So, having said that, there will be a long road ahead, but definitely one we are willing to take and fight through storms as we give Mason a chance at a longer life. If he is able to receive a successful transplant with no rejection his quality of life will be such much better than his half of heart (and failing too) could ever offer him. Now, it's just getting from point A to point B that will require a lot of faith, hope, and endurance.

We go back again on August 3rd for one more dosage change and monitoring of Mason's blood pressure. That will put Mason at the highest dosages on all his heart meds. Then we will return back on August 17th for another ECHO. If there is still no improvement in his heart function, which we are not losing hope for a miracle, but medically it is not expected, then we will start the process to get him on the transplant list. The plan is to draw labs that day to check his antibody level and also to schedule a cath within a couple weeks. The heart cath will give us a more exact measure of his pressures and function.

Dr. Everett said she thinks he will be put on the list within the next 3-6 months. Why the wait? If he's maintaining his heart function and not getting sicker then a little time to put some weight on and get stronger would be good! If his heart function gets worse then we would get him on the list a lot quicker.

I copied the following quote from Gracie's blog (thanks Michele) because when
I read it I felt like it was meant for me at this time. I am grateful that I do know I can pray to my Heavenly Father for guidance and comfort especially while facing this storm with my sweet baby and his broken heart.

"Mortality is a period of testing, a time to prove ourselves worthy to return to the presence of our Heavenly Father. In order to be tested, we must sometimes face challenges and difficulties. At times there appears to be no light at the tunnel's end—no dawn to break the night's darkness. We feel surrounded by the pain of broken hearts, the disappointment of shattered dreams, and the despair of vanished hopes. We join in uttering the biblical plea 'Is there no balm in Gilead?' (Jeremiah 8:22). We are inclined to view our own personal misfortunes through the distorted prism of pessimism. We feel abandoned, heartbroken, alone. If you find yourself in such a situation, I plead with you to turn to our Heavenly Father in faith. He will lift you and guide you. He will not always take your afflictions from you, but He will comfort and lead you with love through whatever storm you face."

Thomas S.
Monson, "Looking Back and Moving Forward," Ensign, May 2008, 90

Thursday, July 23, 2009

Mason's Fans

Mason has so many people who love and adore him....friends, family, nurses, doctors, blog followers and more. His sweet smile, handsome curls, and his loving personality melt the hearts of all those who meet him! (Okay, maybe I'm a little biased, but this is what I am told all the time.) Out of all his "fans" I need to brag a little about those who are his BIGGEST FANS. Mason has 4 very special siblings who love him very much. And he loves them very much too. When they come home from playing, school, or where ever they've been.... Mason is so excited to see them!

(These 4 amazing kiddos keep asking me to make a blog about them, maybe a little jealous??! But, I just haven't found the time to do that. So, instead I am dedicating this post to them. And this post I even started in June, started over on July 12 when I was at the hospital w/ Mason and am hopefully going to post today July 23.)

Going from youngest to oldest...........

AMMON (turned 4 in February):

Ammon has been globally developmentally delayed (mentally and physically) since he was an infant. We started running diagnostic tests through neurology and genetics since he was 11 months old. Still to this day we have no true diagnosis. He fits slightly under the "autistic spectrum" umbrella... but not typically. He holds his "own" title as of right now. He just doesn't seem to fit under any other genetic syndrome. Although, he does attend an autistic unit preschool through our school district. And this, on top of the 2 years of early intervention he had, has helped him to progress leaps and bounds! I couldn't be more grateful to his wonderful teachers, therapists, and the bus drivers who pick him up at our house and bring him home.

Anyone who meets Ammon today has a hard time believing he didn't walk until he was 26 months and didn't talk until he was 3 (well, he spoke about 4 words and did 4 signs for words he couldn't quite say yet when he turned 3). He now runs faster than any other 4 year old I know and he's also talking in 4 and 5 word sentences. Although he is quite an energetic handful, he is sooo happy and loving! One thing he hasn't been delayed in ...... finding a girlfriend! The picture above is Ammon holding his little girlfriend's hand on the bus. He held her hand on the bus everyday the last few months of school. When she wasn't there he would come home and sadly say "Sydney sick. No hold hand bus." He's already a heart breaker!! And oh does he love to cuddle Mason, just sometimes scares him with all his energy. We love you Ammon.

BRAIDEN (turned 6 in February)

Braiden just graduated in May from kindergarten (picture above). He has been my morning helper all year because he attended afternoon kindergarten. And a very good helper he is!! He loves to help bathe Mason, pick out his clothes, feed him (that's when Mason really has food from head to toe!!!), carry the oxygen tank to the car when it was time to take to kindergarten, take him on walks with me, accompany us to many many doctors appointments and much more. Braiden was also the first to hold Mason after he was born , besides me! He was the only one who wanted to come down late that night to the hospital to see him. He loves babies! Although, he can still be my most stubborn one at times, but has matured so much since he was my mischievous 3 year old (the one who backed our suburban out of our garage, across the street, and into the neighbor's flower garden).

Braiden (and Preston) joined the neighborhood in a hair buzzing party (this picture is half way trough his buzz or should I say shave?) in May (the day after the cute graduation picture above). They were bribed by my sweet neighbor to a large shaved ice at Snowasis. Thanks a lot Susan!!! Braiden was not going to pass up that offer. So I gave permission for a #2 buzz, and he came home with a "0".....that's bald!! That's what he wanted. I'm sure at church the next day people were thinking "that poor Strickland family! now they have a child going through chemotherapy?!"
Braiden also asks constantly "when is Saturday?" or to him better known as "lawn mowing day". He absolutely loves mowing the lawn! He is our hard worker and our comedian! We love you Braiden.

PRESTON (turned 8 in April)

Preston was baptized on Saturday May 30th. Originally he was supposed to be baptized 4 weeks earlier, but Mason was really sick so I had asked him if he wouldn't mind waiting until our little guy felt better. At first he felt disappointed but said he would think about it. Later that night he said, "Mom, it will be just fine to wait because I want my baptism day to be a happy day for everybody". That was such a big decision for an 8 year old and I was also very grateful he made it with a good attitude!!
His baptism was very special and thanks too great family and neighbors it was no stress to me. They all pitched in and made it a wonderful evening for all of us. And a very big thank you also to Preston's 12 year old cousin, Natalie, who performed beautiful violin solos! We are mostly grateful to Preston because he is such a good role model for his younger brothers, cousins, and friends.

Preston and Braiden have contests to see who can make Mason laugh the loudest. Mason loves to watch them act crazy.....and he laughs and laughs himself to exhaustion. Preston was my sweet boy that drew a picture at school that said all he wanted for Christmas was"his baby brother Mason to be healthy". His teacher and I both cried! Preston also spends a lot of time playing sports and hanging out with all the neighborhood boys. He is well liked by everyone! I am proud of him because he is always (well, most of the time) willing to include his younger brothers with he and his friends. We love you Preston!

Kaitlin (10, almost 11 in September)
Westfield Elementary (where our three oldest attend school) did a couple of fundraisers for
Mason's trust fund this year. So at the 'end of the year awards assembly' Kaitlin stood up in front of the whole school to tell them "thank you" and presented them with a poster of Mason to hang up in the hall (picture above). She did a great job and I'm very proud of her for offering to do that for me. (I was going to present it and then they changed the time of the assembly and I had to take Mason to doctors appointment.) Kaitlin is definitely the most social and out-going out of all our kiddos. She has no problem making friends and I know many kids look up to her as an example. She is fun to be around, is always worried about others' feelings, and we can always count on her to makes good choices!

(Kaitlin, in this picture, decided to dress a bit crazy for the last day of school with a friend)
I must say Kaitlin helps out in our home more than any other child her age that I know! She watches Ammon a lot, helps hold Mason when I'm preparing dinner or putting other kids to bed etc... (he adores her), helps her brothers with homework, and does a lot of chores around the house. (All our kids do a lot of chores, but she seems to be asked to do more because she's the oldest!) She even gave up dance when Mason was born and diagnosed with his heart disease, because she knew I just couldn't add that to my plate anymore!
Lately Kaitlin has been very sad about Mason's heart failure and his need for a transplant. When I tuck her in at night she begins to cry and asks me, "Mom, is Mason going to be okay?" Then my eyes begin to feel up with tears and I say, "I hope so honey. I sure hope so honey!" .......What else can you say??! Bless her tender heart! She loves her baby brother so much. And Kaitlin we love you too!

I feel so blessed to be the Mom of these five wonderful children. I pray each day thanking my Father Above for each of them and asking for his help to take care of them.

Tuesday, July 14, 2009

Home Sweet Home

Yeah! We made it home! Mason is soooooo happy to be home and so am I. We always have wonderful nurses and care, but nothing compares to being home with the rest of our family.

Mason had no fevers today so they let him come home. The speculation is that he had caught the SWINE FLU (H1N1), but we tested it so early that the tests didn't pick it up! I am so glad we were at the hospital when he first had a fever, because the docs put him on Tamiflu within an hour! It could have been a lot worse and made him very sick, especially his respiratory system, if we hadn't caught it so early. A Blessing in disguise.

Off to put kiddos to bed.....because I need to go to bed. Good Night!

Monday, July 13, 2009

Loving the Hotel on the Hill

Okay, Mason must have a secret love for this place! He spiked a really high fever (104.4) last night which had all the nurses hopping. We were worried because the high fever was causing his heart rate to go too high and his O2 sats too go to low. The docs decided to draw more blood to culture looking for a bacterial infection. And they also started him on IV antibiotics.

So far we don't know what's causing the fever. The x-ray showed no pneumonia. The strep test was negative and the swine flu culture is still inconclusive.....or still pending. The blood cultures will take at least 48 hours to show anything. For right now we plan to be here until Tuesday evening at least and hope the Tamiflu and/or the antibiotic will kick his bug and he will feel well enough to go home.

In the mean time, Mason is loving all his one on one attention from Mom. Maybe that's his secret love about this place :-)

Sunday, July 12, 2009

Not the Swine Flu! Or is it???

We are still here at Primary's. Mason still is having fevers. He seems to be having chills and body aches as well (that is my own guess from the way he is acting). He is not happy at all! Poor little guy is miserable with some yucky sickness. The good news is not the swine flu or RSV! Thank goodness!! I was worried it was possibly the swine flu, because it's been going around our neighborhood.

Okay, so never mind. The doctor just came in. He's not out of the woods on the swine flu. Just the rapid test showed negative. And 40 % of the time that test doesn't catch it. We will know more after it's been cultured for 24 hours. He did start taking tamiflu as a precaution last night.

At least he doesn't seem bothered by his G-tube or sore from the surgery. And also with this fever he has had no appetite (well except to nurse of course....I think he's quite attached to his Ma Ma) we've been able to give him some pediasure through his new tube. So it's already coming in handy.

As of now we don't know what he has. We are going to do a chest x-ray to check for pneumonia and just sent a strep test to the lab. I will update when I know more.

Thanks for your love and concern!

Saturday, July 11, 2009

July 4th Pictures

I know this post is a little late, but still wanted to share some cute pictures.

For several years it has been a family tradition to run the Freedom Run in Provo. Last year I missed it because Mason had just come home after his 2nd heart surgery (the Glenn). This year Mark and Kaitlin talked me into doing it, because I really didn't want to take Mason around the crowd. Mark offered to stay in the car with him and then towards the end to keep him in his stroller a good distance from the main crowd, but able to see us all finish. It was very kind of him and good for me to get out of the house and run outside. It was very fun!! I ran the 10k with my sis and bro -in-laws and their friends. Kaitlin (10 yrs) ran the 5k with cousins. Preston(8 yrs) ran the 1 mile w/more cousins. They did awesome!!! (We left Braiden and Ammon at home in bed with our sweet neighbor Megan. They were too sleepy to get up at 6am)

Mason is thinking..."Ammon's rootbeer looks pretty good!
How can I get some from him?"

Three cute boys! Braiden, Mason, Ammon.
(Mason is chewing on his oxygen cord...good self entertainment!)

Preston is sharing some hamburger with Mason.
And Mason is chucking it on the ground.
He thought the chips and watermelon were much better!

This was my best attempt of all 5 kiddos together.

Hope everyone had a happy 4th of July! We are grateful this day for our wonderful family and for our freedom!

Not a Fever?!!

Yes, it's true....Mason has a fever!  At 3:00 pm, just before the nurse was going to go over all the discharge info with me I noticed Mason's heart rate was much higher than normal. And then I realized he felt quite warm. So the nurse took his temp and sure enough he was 101.5 !! Dang! There goes our plans for going home today. 

The doctor doesn't think it is related to the G-tube surgery, but rather something he was already 'brewing' before we came to the hospital. They took a VRP sample ( where they suction goobers out of his nose) to test for RSV, swine flu, etc...  Braiden (my 6 year old) did come down with strep Wednesday night, so that's also a possibility.  We'll know more around 10 pm tonight. I pray it is nothing major and we can go home tomorrow.

The other bad news is that because of his fever they are moving us from the cardiac corner of the floor to the 'infectious disease section".  That puts Mason on 'room arrest' .....can't leave his room! And anyone that comes into his room has to put on a robe and mask. I'm glad the hospital takes these precautions, except for when it's my child and I'm pretty much stuck in the room with him! 

I will update later.

G-Tube Surgery

Here's sweet Miracle Mason before the surgery.

Mason completed another trip to the OR yesterday!  The hardest part was when the anesthesiologist walked down the hall with him to the OR.  Mason was looking over the Dr.'s shoulder watching me and screaming "ma,ma....."  Tears started to roll down my cheeks! Even though he's gone into the OR for much worse before, it was still tough to say goodbye ( thank goodness only for an hour) to my sweet, but sad and scared, screaming baby. 

The surgery went well.  The anesthesiologist had said before the surgery that with Mason's history and current heart condition there was a possibility he would need to spend the night in the PICU rather than in the surgical unit on the 3rd floor.  But, Mason was a champ and recovered well enough to go to the floor.  I stayed the night here with him and Mark is at home with the other kiddos. It was a long night because he seemed to be in some pain from the surgery. Poor little guy!  But I do feel this g-tube will be good. Hopefully he will chub up a bit!!

The G-tube he had placed is a PEG tube and in 8 weeks after the incision on his tummy heals, all he will have is a little button on his tummy.  Through this button (and right now through the 6 inches of tubing that is outside of his tummy) he will be able to get some extra nutrient rich high calorie liquids.  The tricky part right now will be the wound care and hiding the tube from little Mason and anyone else that might think it's a toy to pull on (okay, particularly my cute little 4 year old Ammon!!!) . Hopefully hidden under a onsie will be 'out of sight - out of mind'.
And if it does get pulled out I will have to put a temporary one back in until we can see the GI doctor!  No thanks :-)

The plan is to go home today around 4pm as long as Mason continues to feel okay and have good vitals the rest of today!! 

This is Mason this morning playing with a lid from
his room service breakfast. He's pretty happy
considering that he's in his least favorite place.