Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Friday, November 14, 2014

On to this week.

It's been an amazing week. Hold on to your seats.
Monday- was catch up day. I made it to the grocery store. A huge feet for me lately, because I shouldnt take Alex because of infection risk. Deciding what to do with that boy while I shop for a family that seems to be eating us out of house and home. I took him to daddies shop to hang with guys and the saw dust. 
Tuesday- busy busy... I had Ortho in the morning. Our friends watched the kids and we swapped with them and brought their kids to our house after to play. Nice to have friends off track too. My grill is looking good. I am on the home stretch. I am pretty sure those awkward years you are supposed to have braces, are when you don't have children who tell you that you are all spitty with the rubberbands. I did choose the neon bands because if I have to wear them I am going bold so people can see I don't just have a spitting problem. 
Our play date went great. Gator's friend ran circles around him. I think he is doing well and has tons of energy until I see a typical 7 year old kid. After about two hours and lots breaks the friend asked to be taken home, bored out of his mind. Gator wanted a nap to recover. Later
his reading buddy Maddox came over for reading and then they played for a bit. 
That night we had piano lesson, RS meeting and a grandma haircut. When I was cutting away my phone was buzzing in the other room. I was busy and didn't check it. Then I heard a loud beeping and thought???? What was that... I went into my room and noticed that the heart pager had a number on it.. I checked my phone and the number had already tried to call 2 times... Nothing was registering... While I was contemplating what to do with both these things my phone rang in my hand. It was Michelle from transplant. WE GOT A CALL!!!!!
There wasn't much information except that there was a possible match and that we needed to get Alex to the hospital as fast and as safely as possible. She asked other questions about Alex's meds and when we had given them last. Also, when he had eaten last and how he was feeling lately? Temp, runny nose, cough? Lucky for us he has been really healthy despite the runny noses a few of us have had. It must be all the hand washing we are doing. 
I was jumping up and down. It was an exciting time. Alex just smiled and was so happy. He was also nervous. Daddy came out of MayLee's room where he was trying to put her to bed. He immediatly called Brother Benson to help him give Alex a blessing. After the blessing I grabbed the go bags and we chucked them in the car and started driving. It seemed like the longest drive of our lives. I kept looking at the speedometer. One of the allert lights came on. The back tires were having pressure issues. I was so freaked that our car wouldn't make it. Alex and I jabbered about all kinds of things while we drove. He must get that from me. To talk nonstop while your nervous. About one mile from the hospital Dr. Everitt called us back. You could hear the dissapointment in her voice. She explained that the donor heart had become very sick and that it wasn't going to work after all. We turned back around in the hospital parking lot and went home. Rats!!!! It was an awesome dry run. Gator was still his usual self. He was dissapointed but he said. "it's still the best day ever, I got to play with two friends." We can actually get calls. 
I kept thinking I get to take Gator home and love on him a little longer. The donor family did not get that oppertunity.
We pray for them and hope they can find a little comfort during this time.

Wednesday was back to business as usual. Dentist appointments, parent teacher for Eden, baby showers and Church meetings for daddy. When I pulled up to the preschool I heard this noise. I went down to visit with Miss Joey and told her I thought somebodies fire alarm was going off. Sure enough we had a neighbors house alarming. Everything turned out fine. But I learned an important thing. If you've taken any smoke alarms down, they need to be replaced right away. If something truly does go wrong, insurance won't cover some or all because you've tampered with the smoke alarms. 
Thursday- clinic day!!! Alex is doing really good right now. His PRA dropped 1.. It's not going back up... Yes! We also had family meeting and discussed plasmapheresis. This would be done right before transplant when we have a heart offer. The heart would not have to be perfect in the PRA part... Plasmapheresis would treat them before and after. We decided to move forward with it. 
Friday- we recovered from our crazy week. Ry and I had a date with Grandma. Zupas and Pedicures!!! 

1 comment:

marti said...

I love you guys! Nic and I were riding the roller coaster of emotion with you that night. When Nic told me what alex said after I thought, this is why he is here to teach us adults how to be joyful and content with the things we do have. I love that little boy of yours!! How blessed you are to have him