Dec 20, 6 Months Today and Gage's appointment

Jason here.
Well it's been 6 months today. A bit of a mile stone, what a trooper, and now we are lookin' for more! Lindsey spent a lot of time on her own today. I took my Dad to Walnut Creek to see a client, and Stacy went to Hunters class.  Lindsey did good hanging out with her nurse Shannon.  At noon today, Gage had his 2 month check up. Actually went well. His heart condition is unchanged from October and good to go until his next checkup 3 months from now in March. These appointments are always hard for me.  Stacy was gone to Hunters class so I was riding solo. For the Nurse Practitioner to get an understanding of how Gage is doing clinically, they ask a bunch of questions (all relating to heart failure), went something like this,
"Does he eat well?" 
  "No, not really, about the same as always I guess".
"Is his feet and hands cold?"
  "Yes sometimes, I  notice it on him more than others".
"Does he sleep a lot?"
  "Yeah, he does take naps, more than he used to"
"Has he been sick, or had tummy pain?"
  "Yes, he was pretty sick a few of weeks ago, but seems to be better"
"Has he had a cough that doesn't go a way?"  
  "Yes, since his RSV when he was a baby, his cough seems to hang around more than others."

Questions I had,
"Is he gaining weight?"
  "Not really, he is in the 21% down from 25%. His weight is unchanged from October at 15.2 kg. (33.4 lbs)"
"What blood type is?" (lets get the sticker shock over with)
  "O+" (Lindsey is O-) Both are the hardest blood types to match up with for transplant (there is a yippee-skippy moment for ya) (Sierra was an A, and waited 21 days)
"How is his pacemaker working?"
  "Great, his lower ventricles are riding the pace maker 100% of the time, the top is riding the pace maker about 10%" Meaning he is fully dependent on the pace maker. (another yippee-ki-yeah moment)  At this rate his pace maker will need to be replaced in about 2.5 years.
"How did the echo and ekg look?"
  "About the same as last time, no significant change in either direction"  (that's good)

All the above are signs of his heart failure. Right now it is unchanged, and that is good, hopefully with the medicine he is on and a new one added, we can keep this at bay for years to come. Currently he is on 5 meds / supplements.
 
Most of the time I find myself trying to deny there is a problem. I can't wrap my mind around the idea that he is really in the early stages of heart failure and DCM. Today while the Nurse Practitioner was asking me all those questions and more, I started to break down.  These are the days you have to face it!  The thought of having 2 kids with the same heart disease and the same rare blood type, just got to me.  Will we every get back to Oregon again? That is the hope isn't it!  Stacy is so strong, I have to be strong.  They caught it early, he is on all the meds and supplements he needs to be on, he is doing great, and is in good hands.  God is in control and will not allow us to be tried more than we can handle.  Look how well Sierra and Lindsey are doing? Lindsey is rewriting the book for Berlin patients. We are blessed, and I thank God for that every night.

Gage really did have a good appointment, sometimes the reality of this sinks in.

Meantime, Gage was having a fun time playing on the ipad, and Lindsey was upstairs in the playroom playing the wii with Shannon.  I am taking Dad to the Oakland airport in the morning.  Tomorrow is the kid's last day of school before Christmas break. Also, tomorrow, Megan and Hunter have their heart appointments. We will find out how their hearts are doing and what blood types they have.   

Happy 6 months Lindsey, we are one day closer!

Our friend Dina with a "Heart Mate." A device like the Berlin only for bigger people.  They can go to the Ronald McDonald House with them. She was being discharged to the RMH.

 

Below: Lindsey's sweet friend Colette that she met at the hospital school, at the beginning of the school year.  She has come back twice and visited Lindsey.  She is a very good friend and we look forward to her visits.