Friday, October 16, 2009

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:

12 comments:

Natalie Walden said...

Summer, It was so good to see you last weekend. You are always on my mind and I can't believe it had been so long!!

Sounds like you're getting some decent news. I am so happy for you. Every time I get on your blog I grab my box of tissues. Gets me every time.

I couldn't even look at Mason that day. When I did the tears started coming. What strength you must have to look at him every day knowing what you know. I so admire you for your strength and optimism through all of this. You are truly an amazing mommy and person, and I feel lucky to know you.

I would love to come visit one day. Maybe one morning when I have no kids and I can come help you do laundry or clean or whatever...... Really, please let me know when I can. I just want to catch up, it has been way too long.

You are in my thoughts and prayers always,
Much love,
Natalie

The G Fam said...

Wow! What huge decisions! We pray for our dear little heart friend and for your family to be strong!

Paul Cardall said...

Wow.... We continue to pray for you and your family!

cici said...

Oh how I love that Hospital with good news for you! Never listen to the naysayers, only the angels lifting up your sweet baby boy to complete his healing.
Mason is surrounded in Prayer, I hope you witness the white light around him.
{big hug}

Kyle and Alli said...

Oh what an absolute roller coaster. I am sorry for all of the drama you have had this week....the worries are some of the worst parts too! I am glad you get a break from the shots for now, though that is hard to hear in case it might actually help his PV! Good luck on hearing back from each hospital!

The Simmons Family said...

Oh Summer... what a crazy week!! Nothing is as aweful as holding down Owen while they're poking him and digging through his veins, he's screaming, I'm telling him "it's okay sweetie" and 99% of the time, I break down afterwards. When I read this post, I started to tear up :(.

I am thrilled to hear about CHOP.. they are amazing!! It stinks that Stanford is 'tracking down' Mason's file. Argh. So frustrating.

If I have learned anything.. it's things fall into place at the right time. We trust our Heavenly Father will make the right decisions clear.

We continue to pray for you all!! We are definetly on the biggest, fastest rollercoaster and I sometimes feel like I just want to close my eyes and scream!

((HUGS))

Mindi said...

Keep the faith. Work the plan. Our hearts are with you.

xoxo,
Mindi

Mindi D said...

Your poor family, i am so sorry, the decisions and waiting must be killing you. Stay strong, you are right, He does have a plan and to me that is comforting :)

Greg and Heidi said...

You are amazing! Keep up the hard work. I have periodically checked on your blog the last several months. I know you are exhausted but I am sure you feel the prayers/angels carrying you. Mason is beautiful. Keep up the faith! I have been hesitant to post because I lost my son to HLHS in August at 6 months of age. After the Glenn things only got worse and his lungs took a BAD hit. His left side kept growing like a tumor and started overtaking the right side of his heart. We were waiting to hear if it would be a heart or heart/lung transplant and who was going to take us! Its alot to anticipate. I am glad he is able to be HOME. That is a great SIGN! The right facility will fall into place. We were telling our other kids it was going to be a FUN adventure for a year (Ethan was so sick they said we had to commit to live near facitlity for a year after transplant. . . they were starting to buy into to the idea when he passed). Looks like you have a great support system!
Sorry about too much info!
LOVE and PRAYERS-
Heidi Skidmore

Kristi Vega said...

Sweet little Mason! What a rollercoaster! I have been reading your blog for a while now, and finally am commenting.

Wanted to ask if they offered you an Insuflon catheter for his injections? My heart baby is on twice daily Lovenox injections because her heart caused her to have a stroke, and we have an Insuflon port in her belly. One change a week instead of 14 shots a week!

Just wondering! I know its a mute point for now, but if he goes back on them... its something to consider!!

Ryan and Hilary said...

It really is the worst to have a sick heart baby. I am glad that he is feeling better. I am extra glad that you are recieving options. Never ever give up. There are many many people praying for your little man. And prayers do work!!! Lots of love,Hilary Cook-Daxtons mommy

Keri said...

AHHH.
It must break your own heart, Sum.
Hang in there.
Glad he is doing better, now.
SUch a great, great shot of your cuties.
miss you!