Merry Christmas!

Wishing you all a wonderful Christmas!

Papa

 

Bryan's dad, our beloved 'Papa', passed away on Friday, Dec. 14th at 10:00 am at his home, surrounded by his loving wife and children. Funeral services will be Thursday, Dec. 20th at 11:00 am at the LDS Church in Royal Camp. Pa is already very missed and will forever remain in our hearts...

plans have changed...

Yesterday we took Maddie over to Seattle for a cardiology appt. with Dr.C and an echo. The plan was to have a check-up, exam and prepare ourselves for a 10:00 heart cath this morning. We had our hotel booked, boys' care figured out here at home and pretty much packed up the whole house preparing to be gone a couple of days. God worked some of His magic yesterday... Maddie's echo pictures were very clear (which is rare since her Fontan), showing Dr C those areas of concern that could only be helped through a heart cath. Her pulmonary arteries look as if they've grown, they are staying wide-open and her Fontan looked beautiful. She still has a little hole (the fenestration which he referred to as a pin-dot) in the conduit but after talking to Dr.J, her cath doc, they didn't feel Maddie would benefit from closing it...she's dependent on it and why mess with things if it's working for her? She has higher pressures and needs the pop-off for blood flow. Her aortic valve is still leaking but its mild so just something to watch but nothing to attend to. And, drum roll please, her O2 sats were 89%, which we haven't seen in a very long time! SO...Dr. C left it up to Bryan and I if we wanted to go ahead with the cath or not. It was an easy decision for us- NO. If all that Dr. J would be going after were the collateral vessels, we can wait. Dr. C did say it's inevitable that she'll need to go back in the cath lab in the next couple of years for some maintenance but we can wait until she shows us more signs, one being her sats staying in the low 80's. This would prove that those collaterals are really stealing blood flow. There really is no rhyme or reason to why her sats fluctuate in his opinion...it could be when she's run-down, trying to fight a bug or hers just will ebb and flow in the 80's. At home, she sats anywhere between 84-88%. Dr. C did say she is one of the lowest satters, possibly the lowest satting Fontan he sees in his practice. But she's doing well, and we'll take it. We will follow-up in 4-6 months with her unless something pops up, unexpected of course. I am amazed by Maddie. She is truly a little miracle and continues to bring so much joy and surprise to our lives! In this world of CHD, things can change, very quickly, so we'll take this! Hearing some good news is so good for our hearts right now. As we were leaving her appt., she was so funny. She tipped her head back, put her hand on her hips and told an audience of nurses (she's a little adored by the staff at Children's) "I don't have to have a cath anymore!" Spunky, yes. I believe this spunk has helped get her this far.

Getting this news yesterday really felt like an answer to prayer. Bryan's dad is barely hanging on. This past month (really, months) has been so difficult for our family...anticipating the inevitable, watching him die is very, very hard. Papa is one tough guy, he has willed himself to keeping on and his determination has been amazing to watch; a little frustrating, but really TOUGH sums him up. I'm so glad my kids have that in their genes. Having Maddie's heart cath on the horizon has been a struggle- wondering at times if God is really hearing our prayers, how are we going to do this with all that we have on our plates...well, I can say without a doubt that HE DOES listen. His timing is perfect and it isn't always our timing but knowing that He works all things for His good is such a blessing. The news yesterday brought some much needed light to a dark time we're experiencing. Restoring some faith, looking to him, THANKING HIM...this is what everyone needed.

But I can say, whether we were in the pre-op area waiting for her procedure or home getting the boys ready for school this morning, my hope and trust remains in Him. He has shown us a tender mercy in one of the most difficult seasons of our life, losing a parent, and we thank Him for this mercy. He is there, He willingly shines His grace upon us, always. I thank God for this time, as difficult as its been.

Romans 8:28

^"And we know that in all things God works for the good of those who love him, who have been called according to his purpose."

Miss Maddie doing what she does best...loving on baby brother!