Chest CT and Angiogram Report and Happy Thanksgiving

I'm sorry it has taken me a few days to post the results from Friday's test. Mason is still not his happy self, most of the day, due to his nasty cold. He just wants to be held and snuggled (I love every minute of it...... but nothing else gets done)!

I spoke with Michelle (Dr E's nurse) Monday morning and then Dr. Everett Tuesday morning about Mason's chest CT and angiogram. (What is an angiogram? They put a die through an IV to provide a contrast as the blood flows through the veins and arteries).

The news is: there were no surprises. It showed his left Pulmonary veins as obstructed with no blood flow.......just as his heart cath had shown. At least it showed his right PV's still open with good blood flow. Honestly, down deep I had this hope of the CT spotting even just a tiny bit of blood flow in those left veins. But, I'm not losing hope in CHOP's and Stanford's belief that the can do a heart transplant, just connecting it to his right lung.

It is my understanding that Dr. R from Stanford wanted this test to see if it was the way his heart was laying ,because possibly the heart could be pressing against the veins, thus obstructing them. That would have been nice, but that is not what the CT showed. The results were burned on a CD and over-nighted to Dr R on Tuesday. I am not sure if we will get his opinion of this test before we meet with him at Stanford ( or, really known as Lucile Packard Children's Hospital) next Thursday Dec 3rd.

For now, please continue to pray with us that our sweet Miracle Mason will yet be touched by more Miracles from our Father Above. We do want what is best for our baby, and we will forever know ultimately "what is best" will be God's will...... but I do strongly believe that we have to do all that we can to show Him we are doing our part, have faith and hope in Him, pray like it all depends on us, and then leave the rest in His hands.

On this day before thanksgiving, I want to say there is so much I am thankful for, more than I can list on one page. Although, on this day I do want to say I am so grateful for my family and for the HUGE blessing Mason is to our family. And actually, the blessings each of our 5 children are in our home. I am grateful for prayer and faith in our Heavenly Father and Savior to help get me through tough times I face in life.

Happy Thanksgiving from our family to yours!

Also I need to say a "special thank you" to our friend Tyler who gifted us his frequent flyer miles to pay for our flights to and from Stanford next week. Thanks to Tyler, Mark will also be going with Mason and I. Originally he was not going to because of the cost. And thank you to all of you who are sooooooo kind to our family!

A Long Friday

I got all the kids off to school and Ammon to Grandma's (he couldn't go to preschool with his runny nose) and left for Primary's a little after 9am. I checked Mason in at Same Day Surgery (even though he wasn't having surgery, this is where you check in for general anesthesia as requested by Dr. Everett)) at 10am.

While we there waiting, the sedation department for most CT's, MRI's etc... (they sedate w/ sleepy meds through an IV) also had Mason scheduled to be sedated by them. So they told the cardiac anesthesiologist who had been assigned to Mason's case that there must have been a confusion and he didn't need to do it.

Mean while at 12:30 Mason and I continued to wait for our anesthesiologist up in "same day", he went home, because supposedly he was done with his cases for his 24 hour shift!

Finally after checking with the nurses at least 3 times about why we were waiting so long..... as poor Mason got hungrier and hungrier (he stopped getting any kind of food/formula at 5am!), a nurse tech took us down to the "Imaging check in". They sent us to sedation, whom I told he was supposed to have general anesthesia ......yikes! At this point I discovered what was going on and was very frustrated! It was now 1pm!!!

After Sedation checked w/ Dr. E , they realized I was right and had to call the anesthesiologist back to the hospital, because all the other cardiac anesthesiologist were busy! NIGHTMARE!!!

By 230-245 he was finally sedated and getting his chest CT w/ angiogram! Which only took 5 minutes. ALL that for a 5 min. sedation ??!!

After recovering from his sedation we checked w/ Dr. E and the CT report wasn't finished yet..so we decided to head home in an effort to beat traffic!

All the radiologist told me was "it went well and we were able to get all the images needed". That didn't give many any of the info I wanted! But at least that means we won't need to do it over again.

I expected a call from Michelle, Dr. Everett's nurse practitioner, last night. But to top off our long day, I received no phone call! Hopefully NO NEWS means NO BAD NEWS!

Thank you for all the text messages, blog comments, and e-mails letting me know we were in your thought and prayers especially for this test yesterday!

I've got to go get Mason who's now crying....he has a brand new cough and runny nose! Darn it....it looks like he's going on round 2! He coughed and cried most of the night. It was a very sleepless night, but I will not complain because I had undivided time with my Miracle Mason. For I still worry and cry often about the unknown..... how long do I have with him here on earth?!

I will post with a report of CT when I get one.

Have a great weekend!

Loves to you from Mason!

Chest CT Today

I just wanted to post a quick update. Mason is feeling much better and his cough is almost gone! Yay! Although, Braiden and Ammon have been under the weather this week with different sickies so hopefully Mason won't go for round two. I can only sanitize my kids' hands, wipe everything w/ clorox wipes, and try to keep my sick kiddos away from Mason so many times in one day.....before they think I'm Crazy Mom!!!

Today, Mason will have a sedated Chest CT W/ an Angiogram at 11:30. This was requested my the doctors and surgeons and Stanford to get a good look at his left pulmonary veins (LPV's) which we found out were obstructed during his heart cath. And to make sure his lungs are healthy (well I guess really only his right lung his the healthy one) and clear of fluid or disease.

We will check in at 10am for his general anesthesia. (Which has to be done by a cardiac anesthesiologist.)

At around 12:30 I will hopefully receive GOOD NEWS! Meaning, NO BAD SURPRISES, and nothing which should give Stanford 2nd thoughts on Mason receiving a new heart going to his own right lung. I may not know everything today. I may have to wait until Dr. Rosenthall at Stanford receives his copy of the CT and angiogram. But hopefully today Dr. Everett and the Radiologist can interpret what they see at least.

Please PRAY with our family this day for a smooth sedation and good news after the CT.

Mason and I will travel to Stanford on December 2-4. On the 3rd we will have different appointments all day including meeting with Dr. Rosenthall about his final opinion on what is the best plan for our Mason.

(If you read a few post's ago that the 3rd of the month has brought us bad luck several times, then you might wonder why we are doing this on the 3rd??!! When Stanford normally has at least a 3 month wait or more for new patients, you take what you get and hope for the best!!! At least we are not flying on the 3rd though!)

I may not post any news about today until late tonight....Mason usually needs my undivided attention after a sedation. It makes him feel quite yucky :-(

I am very grateful for all of you who continue to send love and prayers our way!

THANK YOU!

The Latest and Greatest

This is exhausted Mason after a LONG night!

I will start with the latest update on Mason.

He is still struggling with a horrible cough!

On Sat., Sun., and Mon. nights it definitely sounded like croup. That tight, seal-like bark, very scary cough that put Mason and I outside several times during the night so he could breath in some nice cool air (to open up his airways). And thank goodness from our pediatrician Dr. W who now lives in my neighborhood (good for us, bad for him!!!), Sunday morning he brought Mason a dose of decatron (sp?). The one time med that helps loosen up the tight airways caused by croup. It seemed to help, because by Tuesday his cough was starting to sound much looser, but junky.

Now, its not that scary croup cough, but he's throwing up a lot because he gags on all the junk he's trying to cough up! Poor little guy! I hate seeing him throw up and especially when it comes back up through his nose (sorry if that's too descriptive). He screams, cuz I'm sure it burns horribly :( !!! Then yesterday , continuing and through last night and today, his oxygen sats have been dropping (from 80% where he is supposed to be to 60-65%) so I've had to up his O2 from 1/2 liter to 1 1/2 liters. His energy level is down and he is not his happy self. He coughed and puked all night! I pray that he can get over this ASAP.


I am sad he is sick.

I am scared and worried.
If the junk gets into his one good lung that would be bad.

I am tired.

Mason is tired.

But, he will get better soon so we can go visit Stanford!


That leads to the greatest news of the week.....I got a call on Tuesday from Stanford's heart transplant coordinator. She said that Dr. Rosenthall, their heart failure/transplant cardiologist, feels that Mason will probably be a candidate for just a heart transplant to his own healthy lung (just like CHOP's offer)! He doesn't want to give his final opinion until Mason has had a Chest CT (cat scan) to get a good view of his obstructed pulmonary veins and has come to Stanford for an evaluation. He would like to meet Mason and talk with us in person.


I have been working out the details the last couple of days. The evaluation will take 2-3 full days of different appointments. As soon as I have the CT scheduled at Primary's then we will get a more definite date for Stanford. We will probably go sometime in the next 3 weeks.


I am so grateful for this news. Now that CHOP and Stanford are thinking along the same lines (and they are the 2 top rated pediatric cardiac transplant hospitals) I feel this will help us in our decision about what will be best for Miracle Mason.


Mason needs a bath and some snuggling....so I will update more later as I get any new info. Thank you for all your prayers, support, & concern. I know every prayer counts and helps our journey at this time!

p.s. A huge "Thank you" to a very special friend who sent some cleaning ladies over to rescue me this week! (Again!!!)

Under the Weather

On Thursday morning, on the way up to Primary's for Mason's cardiology checkup Mason started coughing a lot. I thought to myself "oh no, is he getting sick?" And sure enough, at the appointment I could tell he was starting to feel feverish and really yucky. As we started to visit with Dr. Everett he sneezed out lots of nasty drainage.... and she immediately said I think we better test for Swine flu and RSV before you go home.

The good news is that everything came back negative. Although he's still got some nasty bug, because he is on day 3 of fevers, a runny nose, and a horrible cough. In fact he's been coughing so hard he gags and pukes, and he's lost is voice! He's got a really sad little cry right now, kind of like coming off the venilator. It makes me so sad when he feels this way. It also cause me anxiety knowing he's only got one healthy functioning lung! I pray it does not get down into his lungs. That would not be good.

At the appointment he didn't have an echo, but Dr. Everett said his heart and lungs sound good. She kept all his meds the same, because he's doing so well (besides this sicky bug). And......drum roll........Mason weighed in at 20 lbs 2 oz !!!! Yay!!! At 23 months I can finnally put him in a forawrd facing car seat. We will go see Dr. Everett again on Dec 14 for a check up and an ECHO.

Hopefully Hevaenly Father will continue to send tender mercies our way, so Mason can kick this cold and not need to be seen before then!

As for the other hospital and doctors from whom we are waiting opinions....I have no news. Honestly they must think Mason has all the time in the world to wait for them!!! Stanford called Monday after their care conference where they talked about Mason(which was on Friday Oct 30 th) and said they needed images from his Caths and Angiograms. What? Those had already been sent 6 weeks ago! Anyways, hopefully we'll hear something this coming Monday.

For now, I am on my second day in my PJ's holding Mason, because he feels so awful he won't let me put him down to even get myself dressed. I will just keep rocking and snuggling my precious babe, ignoring the messes that are all around me. For those can wait, but he can't!!!

Here is a quote I read on Paul Cardall's blog the other day (I've heard it before also) and feel like it is very fitting to our Journey right now:

"Each of us will have our own Fridays—those days when the universe itself seems shattered and the shards of our world lie littered about us in pieces. We all will experience those broken times when it seems we can never be put together again. We will all have our Fridays. But I testify to you in the name of the One who conquered death—Sunday will come. In the darkness of our sorrow, Sunday will come. No matter our desperation, no matter our grief, Sunday will come. In this life or the next, Sunday will come!” Joseph B. Wirthlin

I must say many days feel like everything in my world has shattered into pieces, but at the same time feel so blessed to have this opportunity to be Mason's Mother. I have said many times, but will say again I couldn't do it without all of you. So many acts of kindness, whether small or big, help get me through some of my most emotional and tough days. I have felt since Mason was born that we constantly have angels watching out for us. And here is a quote from a talk given by Elder Jeffery R. Holland which talks of these angels:

He testified, "My beloved brothers and sisters, I testify of angels, both the heavenly and the mortal kind. In doing so I am testifying that God never leaves us alone, never leaves us unaided in the challenges that we face. Nor will he, so long as time shall last, or the earth shall stand, or there shall be one man (or one woman or child) upon the face thereof to be saved."

Until next time...... and thank you for all your continued prayers for our Miracle Mason.

Halloween 2009

Mason was our adorable little dalmatian puppy.

He wasn't quite sure what to think of all the costumes, but

enjoyed it because he was doing what his brothers and sis were.

Ammon was very proud to be a fire fighter!

And loves all the treats too of course.

Braiden was Mr. Yellow M&M for school and

a football player for trick or treating.

Preston was Mr. Orange M&M and he was sure glad he wasn't

a football player like all the other boys at school this year.

Kaitlin was a beautiful lady bug! (She was also

a lady bug when she was 1 year old. I don't know

how to scan the old non digital photos or I'd

put one up to compare how grown up she is!)

Here are the boys ready to go trick or treating!!

"Happy Halloween" from the Strickland Crew.

Carving Pumpkins (The night before Halloween)

We hope that your family had just as much fun on Halloween as we did.

With love from,

a lady bug, 2 M&M's, a firefighter, and a very cute puppy

Celebrating 23 months With Our Hero Mason!

Mason is truly our (super) hero)!

What a great accomplishment for a little guy who's been

through so much! Happy 23 Months Miracle Mason!!!

Since the kids dressed up for school today, Halloween falling

on Saturday (tomorrow), Mason needed to be dressed special too.

I thought a cape with his Superman t-shirt would be very

appropriate on his 23 month b-day. For after all, he certainly

is quite the Superman....as he keeps on fighting to be strong,

even with half a heart!! And you can really tell he's almost 2,

because he will not sit still for a picture.

Mason LOVES the outdoors! Too bad it is already getting

so cold here in Utah. I love this picture of my little Miracle Superhero.

He is just as happy as could be to sit and watch what's going on

outside. The funny thing is, all the kids were at school

but there were guys out mowing the neighbor's yard, which

was just enough to keep him content and hold his attention.

Oh how Mason loves bath or shower time!

Here are two sweet boys, Mason and Ammon.

He scooted down the stairs and now he's trying to

figure out how to come back up.

Always so happy!

This is at one of Preston's football games. We love when

things are outside so Mason can join in on the fun. We still

stay away from indoor crowds, Mason can't handle the germs. (And I

really only have 5 kids, Kaitlin's friend Chesney had joined us that day.)

And after a long hard day Mason will at least sleep a few hours!

I love pictures of my sleeping babies.

Mason seems to be doing so well. Beside the occasional pukes (at least once a day) from his heart failure, he acts like he feels pretty good and his energy level is better than even just a couple of months ago. His newest tricks are : getting up on one knee and then trying to pull himself up to a stand at furniture (still can't do it completely by himself, but at least he tries),

and he loves dancing to Kaitlin's music. He will scoot on his bum, spinning himself in a circle and wave his arms up and down to the music...... and the whole time watching with a smile to make sure we are all looking at him. He's quite the "show off"!

When our busy day comes to an end and I've tucked all the other kiddos into bed, I rock my little Mason into the late hours of the night. I've always cherished this time with Mason, but even more so now. My emotions are usually high and my tears begin to flow, as I think of the uncertainty we face in our journey here on earth with Mason. I plead with our Father in Heaven to make him healthy enough to stay here with us. But at the same time, inquire with faith in Him to know what is best for sweet Mason and our family. Honestly, my strongest desire and hope is to have him healthy, strong, and O2 free..... to run and play outside with the other kids! I pray for comfort each day to get through these emotional times, and I hold all my kids a little more and a little closer, for we never know what tomorrow brings.

"Dear Sweet Mason,

Thank you for bringing so much happiness into our home! You have been such a blessing to our family! We pray that Heavenly Father will allow us to celebrate many more months and years with you.

Love, Mommy"

Announcing a Change to the Benefit Dinner / Update to the Waiting Game

(I really did start this post on Saturday, but life is busy!)

Mason's Fundraiser Committee (Yes, we have such wonderful neighbors that there is an actual committee that has met once a week for the last 6 or 7 weeks!!!) has decided to postpone the benefit Dinner until February or March. There was much concern that along with the Miles for Mason ride/walk and Mason's Monster golf tournament this last week (I didn't post this on the blog because it was targeted to gather a different support group than those already helping through the ride/walk and the dinner) the dinner was timed too closely to get the best possible turn out and support. They decided it would be in the best interest of all those involved in the planning, auction donating, attending, as well as our family's needs to postpone it a few months.

I know there was already so many wonderful items donated for the auction and these items will be safely kept by the committee until the dinner/auction does take place. Also, there are many of you who had already purchased tickets so please contact the committee member from whom you purchased your ticket.

We graciously thank you for your wonderful support in Mason's fundraising effort. Whether Mason is able to get a transplant or not, our out of pocket costs for his medicine, treatments, and bills that continue to come for his past surgeries, are tremendously taxing on our family. Our gratitude is beyond words and we look forward to Mason's dinner when we will get to spend the evening with so many of you.

And a very special thank you to Cecil Read and all those involved for the golf tournament. I was told everyone had a great time while supporting our sweet baby's medical fund.

************************************************************************

An Update on Mason and our Waiting Game

Mason continues to be a little trooper, scooting around the house and yard as far as his oxygen cord will stretch. He is doing so well, gaining weight, getting stronger, and as happy as could be that it makes it so hard to believe how sick his little heart is and that basically only one lung is oxygenating his whole body. With how good he looks, how could he actually have been given a prognosis of several months after his Heart Cath on September 3rd? This continues to tear my heart to pieces :(

(This is a bit off subject, but have I ever mentioned that the 3rd of the month happens to be a bad luck day for Mason? At 3 days old on December 3rd 2007 he crashed / coded blue, was Life Flighted to Primary's and diagnosed w/ his heart disease HLHS. At 4 months old, on April 3rd 2008, he had arrhythmias so bad that I called 911 from home and he was Life Flighted right from in front of our house to Primary's. And then the heart breaking bad news Heart Cath was on September 3rd 2009! I hold my breath now on the 3rd of the month and pray to make it through the day without any bad news!!!!)

Okay, back to the Waiting Game...... we continue to get the run around from Stanford. I finally talked to the heart-lung transplant coordinator on Friday who told me they were still straightening out some insurance and benefit issues before the doctors and surgeons would look at all of Mason's info. I told her that I would not come for a consult until I knew what the doctors were thinking as a plan for Mason. So instead of scheduling our consult as soon as the financial stuff is worked out, she said she would call me on Monday or Tuesday after the doctors had looked over Mason's information thoroughly.

This is very frustrating because Stanford was the only Hospital that required an insurance pre-authorization to even look at his info, and our insurance company will only give one pre-auth(for out of network) at a time. (And it was given to them over a month ago!) Thus, we need to get Stanford's opinion before we decide whom to actually go with and give the insurance auth to for Mason's treatments. And on top of all that, if we do go forward with a transplant we will meet Mason's life time insurance max before the transplant is a completed. Also there is at least $40,000 of the price of the organ that the insurance will not cover. So Stanford will require us to turn in a medicaid application before the consult as well! We've tried before and been denied, but hey it is worth a try. (This being said, there is definitely great need, even beyond our already high out of pockets costs presently, for all the fundraisers. Thank you thank you!)

There are still 2 more hospitals we are waiting to hear back from.

As for CHOP (Philadelphia), Mark and I had a conference call on Friday with Dr. Shaddy, their head doctor over the Cardiac Transplant Team. And just a side note, he was actually at Primary's for 21 years until he took his position at CHOP in 2006. Anyways, he presented to us their offer and opinion that for Mason a heart transplant to a single lung (his one healthy lung being his right lung) would be the best option.

He then of course presented all the risks especially for Mason's unique case. The 2 biggest risks for Mason, on top of the normal risks for a heart transplant are:

1.) connecting the new heart to just one lung (because of the PVS on his left side). Has this been done before? Yes, but what Mason has is VERY rare and this procedure has not been done very many times. In fact Dr. Shaddy himself has witnessed this only two times in his 25+ years as a cardiologist. (AND these two times were at Primary Children's performed by Dr. Hawkins. But this last April Dr. Hawkins quit when he was diagnosed w/ pancreatic cancer. Because of this Primary's does not have a senior cardiothoracic surgeon at this time.... therefore leaving us to look else where for his same level of expertise. Primary's does have 3 very qualifiedcardiothoracic surgeons just not with the same amount of experience! ) CHOP feels they do have the expertise to perform this special transplant.

2.)Mason's Level II antibodies are high, at 98%. At least his Level I are 0% which are the more common antibodies, but his Level II are still concerning and can cause rejection.

Dr. Shaddy said that the normal survival rate at 1 year post pediatric heart transplant is 90 %, but adding Mason's unique risks to that his drops to 70-75%. And he also said that adding these risks in can lessen the duration of the new heart once placed in Mason's body. Normally, I believe (but, I may be off on this one) a transplanted heart can last 20 years with very minimal amounts of rejection, but in Mason's case it would at least be cut in half (that we were told would be best case scenario). If no acute rejection is involved, the patient can then be listed for another heart transplant. This being different than a heart-lung transplant. A lung transplant is a one time thing only, with best scenario lasting 4 years.

Another huge factor involved with CHOP, is relocation. Mason would need to be within in one hour of the hospital once listed for a heart. With his health how it is at this time he would not need to be admitted to the hospital while waiting, unless he worsened and needed to be on IV heart meds. But still within an hour of CHOP!! Then after the transplant he would need to be there for 1 to 3 months to monitor his recovery and watch for rejection. Being that the wait for a heart can be 1 day to 1+years, this could be a long temporary relocation! Being a family of 7, we would need to feel VERY STRONGLY that this is the right choice for Mason.

At this time as we wait for the rest of the hospitals to give their opinions, Mark and I have some big decisions facing us. In tears I now will say...."Ultimately, we feel this is a very sacred decision between us, as Mason's parents, and our Father Above". And believe me, I've always been grateful for the power of prayer in my life, but more than ever now as we look to Him for such important guidance and comfort.

Again, thank you for all of your prayers, concern, donations, and acts of service. We could not get through this without all of you!!!

Mason's Benefit Dinner

Mason invites you to attend a very special evening in his honor:

(Please click on the above portion of the flyer to see all the details.)

Our family feels very honored to have so many friends, family, neighbors, blog "heart friends", and even those of you we've never met that have supported, served, and loved us through our journey with Mason.

This benefit dinner will be a very, special memorable evening for our family and we are so grateful to all those who are involved in putting it together. We hope many of Mason's fans will be able to join us.

Some of my dear friends have told me they are going to attend Mason's Dinner instead of giving out neighbor gifts and/ or taking part in a "sub for Santa" this Holiday season. This will be their family's Christmas service project. Wow!!! That means so much to us! We feel so loved by all of you! Thank you!

One Day at a Time

(Mason is guarding the thermometer with his life!

He did not want me to take his temperature one more time.)

We've had better weeks.

The first thing I learned when by surprise I became a heart Mom almost 23 months ago was.....".welcome to a long roller coaster ride" or in other words......expect the unexpected, take one day at a time (or sometimes 5 minutes at a time), prepare for the worst-but always hope for the best or in our case another miracle, and pray like EVERYTHING depends on your prayers!

That being said, in summary here's Mason's week:

* 6 days of a fever (99.5 to 101), not too high, but enough to make him feel yucky.

* began Lovenox shots twice a day (this is just as bad for me, because I have to give them!)

~why? it is a blood thinner used to prevent clotting. Dr. Everett prescribed it due to the speculation that a clot caused the stenosis in his upper left P veins. The main reason is to prevent other clot problems, with an underlying hope of dissolving the one in his upper left PV.

* In the last 7 days we have gone to the American Fork Hospital 5 times to have Mason blood drawn to check his lovenox level. (Where I have gone directly to their peds dept. to have it done, because their lab isn't used to doing kiddos, especially a hard poke like Mason. "Thank you and Sorry for the drama" to RN's Ashley and Summer (And by the way, I like her name!).

* Blood draws are very traumatic for Mason. He starts to cry as soon as the nurse puts her gloves on! And when you are a HLHS kid you have very poor perfusion, and most of your veins are bruised. And when your the heart Mom, it doesn't get any easier with all you've been through, to hold your baby/toddler while he thinks he's being tortured! He cries the entire time and I cry on the way home :(

* Out of the 5 attempts only 2 times was enough blood drawn to run the test. And 1 of those 2 got lost somewhere between the blood draw and the lab (sent to another hospital)!

*Entering the AF hospital peds dept. for the 5th blood draw I get a call on my cell phone from one of the heart transplant Dr's from Houston Children's Hospital. The news was not good. They decided they do not want to treat Mason. They feel the outcome would not be good for Mason. So here I am crying on the phone, the nurses hand me a box of kleenex, and Mason begins to cry as he figures out why we are back again.

* The night before last, Mark and I discovered a large soft, gushy area (about the size of my palm) on Mason's head. It seems to start at a little bump/bruise he has on his crown. (He's always seemed to bruise easy due to his aspirin so I'm not even sure where the bruise came from. All it takes is a little bump on furniture or a toy etc)

* I call Dr. Whiting (our ped.) at 10:30 pm that night! Sorry! Who reassures us if he's acting fine, it's probably just blood under the skin due to the extra blood thinners he's now on. His behavior is normal, not like that of a skull fracture or concussion, so we decide to wait until the morning to have Dr W check it out.

*But, I still worry ALL night!!

*After seeing Mason in the morning, Dr. W advises me to skip his lovenox shot until he consults with cardiology. We are speculating it was caused by the original bump and then something irritated it and it bled under the skin, like bruising below the skin. So the lovenox and aspirin most likely are the culprit. As long as he continues to act normal, for now we won't do a CAT Scan.

*Cardiology confirms to stop the lovenox for now. It seems to be causing more problems than it is worth!

*Today, Friday, brings a better day. Mason's fever has been gone since yesterday. He is happier. I'm happy I don't have to give him shots anymore, at least for a while. But this is bitter sweet ......because what if it could really help his clotted vein?!

It seems today brings an upward swing in our roller coaster because I spoke with Dr. Everett and she had good news from CHOP in Philadelphia! Their cardiac team feels quite optimistic about treating Mason. They of course would have to see him first before any final decisions are made, but they feel that the best course to take for Mason would be just a heart transplant to his one healthy lung. Philadelphia is one of top rated in the country in experience and success for high risk pediatric heart transplants. So, this was terrific news coming from them!!! I do not know the details yet because they should be calling us by Monday.

Stanford called our transplant coordinator last Friday asking for me to schedule appointments with them to see Mason. So I called scheduling who said they would have a nurse call me on Monday. But I don't know any more than that because I never received a call! Frustrating! I called them Tuesday and spoke with one of their heart transplant coordinators who didn't know any thing about Mason. She returned my call Wed, and said she is trying to track down information for me from the heart-lung team. I'm not sure who dropped the ball on this one, and I certainly don't know what they are thinking?! For, time is precious, especially if you wear Mason's shoes!

We have some big decisions facing us now. I pray that our Dear Father in Heaven will make the correct path for Mason very CLEAR to us! I know He has a special plan for Mason. We all know that I hope and dream His plan leaves him here on earth with us for many more years. But, although it makes me cry to say this...... I am at peace knowing families can be together forever someday.

I will post as soon as I know any more from these Hospitals.

Here is another cute BLUE LILY photo from June: