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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.

Thursday, November 27, 2014

A day of gratitude..

It may seem like a bummer to spend the Holiday in the hospital.. Really, it's one more day to be together. I couldn't be more thankful.
And this is his choice for a thanksgiving dinner. He was happier then a pig in a mud puddle. 
We even got to get together for pie! I love these short people. 
 This killer pizza on his way out happened. 



Admit required

During Bortis treatment last night, Gator was having a very difficult time keeping his oxygen happy. He went from 1 liter of oxygen to 3 liters. He wouldn't tolerate even trying to come down a little.. This posed a slight logistical issue because our travel tank was seriously low and our concentrator at home only goes to 2 liters.. Planning discharge was tricky but we figured it out and had a late night delivery of a concentrator that could handle his new liter flow. We were discharged on my comfort level on his management. I felt good taking him home at that point and we packed up and went to the car. As I was unloading him from the car, he began to cry and get very very sad. He told me his stomach hurt really bad. More than when we first got here. Not wanting to jump into the car and head home till we felt good about it together we sat in the car and said a prayer. Then we called daddy. Daddy calmed me down considerably and suggested having them do a quick check on him before we got down the road. As soon as we made it back to RTU they could see how yucky he felt and decided to intervene with more IV lasix. We will be running more tests today and that about sums up what's going on. Jeff got up and ran a 5k this morning.. The girls and daddy and grandma and papa Homer went to breakfast. We are all having an awesome holiday. Just rolling Homer style.. 

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!!! 





Sunday, November 9, 2014

Silly old blog

Today I have finally downloaded all the pictures off of my camera and taken the time to put my thoughts and our family happenings all in one spot. 

Chronological order seems smart to as a way to help me rememeber everything I need to write...One week at a time momma...
We finally had Eden's friend fairy party... It was amazing and so much fun. We painted faces, read stories, had fairy olympics, everyone got wings, crown and wand, we even had pixie dust to give away. I won't lie, I was ready for a nap after that.



That night we carved our pumpkins... 

I lovr the shocked look on Eden's face after she touches pumpkin guts for the first time.. 
The  finished products..
And we still lit up Olaf, Ryleighs pumpkin she did with daddy. Even though he looked pretty scary now.



Gator and I zombied it up at clinic. We had a great time but felt that the rotting flesh was itchy. We ended up taking it off before long. Then we had these awesome spots all over our faces. It still had a pretty good effect. Next time we know to use liquid latex.
We caught up with our good buddy Teags who was doing reverse trick-or-treating and handing out treats instead. He was dressed as the tin man. If he only had a heart. 
They can't help but be goofs. We said good bye to our dear Miss Jen the NP. She moved to be closer family. We love our whole team and she will be missed dearly. We feel like our doctors and nurses become friends. She promised to stay in touch. 
Eden had her preschool Halloween party and parade. She was on of the beautiful Elsa's that trick or treated this year.

grandma made her dress and she loves it so much.

I missed Ry in the school Halloween parade but did catch her between classes. She Vamped it up this year.

Gator was the super tail end of the parade, but still had fun walking through all the classes.
May was a cute little witch.. with her O's ripped off. That little snitch has been taking it off so much during the day that I am about to go all drastic on her somehow. I wonder if home health has NoNo's.

We attempted trick or treating. We made it to about 15 houses... came home for a rest and then made it to about 10 more.. With a lot of this...
Resting on rocks, drive ways, curbs...

Daddy finally made it home from what seemed like the longest two weeks of our lifes. Lucky for us Pres came to stay and save us all from ourselves.