Life with a boy and his Hypoplastic Left heart Syndrome, Also a baby girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, and Two Super Sister's!

Thursday, December 18, 2014

Today and all the other days..

Jeff- he is healing up nicely from his 'home lighting' experience. It is very hard to be in carpentry and not be able to use your hands the way you are used to. 
Brynn- visited the genetics counselor. Left feeling more secure about this pregnancy. The baby is doing great so far and I am finally starting to feel a little less yucky.. Thank you second trimester.
I still think it's a boy.. Jeff thinks it's a girl. We will get to find out in about five weeks. 
Ryleigh- is amazing! She is doing so well in school. I just love this girl. 
Alex- has had some very good weeks. Both last week and this week he is holding stable.. In fact his antibodies dropped again. One of his docs told us today that Stanford does some special testing that they would like to bring to PCH and Alex would be a perfect patient to begin with. Hopefully we can get some more clues to his complex case. Although I haven't met a kid that needs a transplant that isn't a complex case. Speaking of other kids.. Teagan, who is also stable right now. Is such an awesome friend and he and Gator talked with Hope Woodside about organ donation. Their story should air on Christmas night at 9 o'clock. Teagan's mom Brytten is amazing and helped a ton because the interview was while Gator was in the ICU.. So she was our voice! 
Eden- this super star just had her Christmas program for preschool! She did awesome! 
My favorite song she did was S A N T A.. 
Gator facetimed into the program from home. So did grandma and grandpa Clawson.. Grandma Homer made it in person and Papa Homer stayed with the boy. She got Sams Club slushy and pretzels as her post program treats. Yummy! 
MayLee May- I ask her how old she is and she says 4.. She is so full of it for a not even 2 year old. She even decided to wear panties and made it to the potty two times.. It was short lived. Dang.. 
Every day is an adventure:) 
The awesome sister missionaries at our Christmas party! 

Wednesday, December 10, 2014

Thoughts as we move forward

Slowly and surely... But forward.. 

I was struck by the generousity of the family that offered to be our first donor. They are just as important to me as a donor that would have been successful, and I wanted the family to know that. I wanted them to know how many prayed for them and sent words of comfort during an incredibly difficult time. 
I want them to know because I have been on a couple sides of this donor business.
Last year my little niece Jenevee June died.. She was just a tiny baby, only four months old. Not nearly long enough to love on her. I was there the day her little spirit left her earthly body. My brother and sister decided that she would be a donor. The choice that they made seemed so incredible during their grief. I find comfort knowing she helped to make the life of another tiny baby better. Now that we are facing needing a donor. Her gift is even more precious. 
I wrote our donor family this letter. I am sharing it because I want every family who has decided to be a donor to know my gratitude as well.. 

Dearest Donor Family,
On a Tuesaday night the most amazing thing happened. You said YES to organ donation.
You have changed our lives forever and I want you to know that your thoughtfulness, your generosity, and your love at a time of extreme difficulty and grief will forever connect us. We don't know you, we don't know anything about your situation (or you ours), we don't even know if our angel is a boy or a girl. What we do know is that they are our Hero. 
I am so sorry that that probably doesn't give any relief to your broken hearts. I am sorry that you had to do things that nobody ever plans for for a child. I am so sorry you had to even think about being a donor, but you did. You thought of someone else, you thought of us. How amazing you are.
Did you know that our kids were a perfect match? You have given us such hope when we had almost nothing left. You have renewed our faith. 
Thank you will never seem like enough. Thank you will not heal or bring back your child. 
Thank you, is all we have to offer our donor angel. 
Thank you with all our HEARTS!!!!
This gift that you have given has buoyed us and those around us. Our donor angel is loved by so many that will never know anything about them. You are loved by so many that will never know you. 

Saturday, December 6, 2014

Because that's how we roll...

Have you ever had weeks when you are glad it has passed? It wasn't done well. But it's over!
Last we left off we had enjoyed some yummy Thanksgiving dinner in the hospital. We also announced our pregnancy to the kids. Ryleigh is not happy with us. She is actually quite mad and will be discussing her incredibly difficult track off time to her friends when she does track on. "Let's not talk about it" is her new favorite sentence. It will take some time. 
Monday we actually saw the little shape of what I am affectionately calling "bonus Homer baby"... It seems we would either be bored or naughty if we have too much time in our schedules. So a couple more doctor appointments for me should do the trick. As well as genetic counseling. If I am to get my nursing degree of hard knocks I should probably go to genetic counseling. 
Monday afternoon we heard from HTX team. They wanted more blood work to check on Gator. The on call nurse had serious car issues (bless her) and made it out to us at 11:30pm. Tuesday afternoon a call back confirmed that Alex was struggling. Instead of our regular Thursday clinic, he would be seen Wednesday. We were advised to come with a bagged packed. 
Wednesday he was admitted to increase his Milranone. From what we had always been told once you made it to 1, you stay at the hospital until you get a new heart. Wednesday also marked 300 days waiting for that new heart. Alex was not even well enough for his Bortisamib treatment. 

The increased dose changed that little guy from super tired man, to more like himself man. 
Thursday the girls saw Santa at Dr. Bills office. I was really excited to see Santa and hoping to take Gator, but his admit made it so I just told Santa what he wanted. 
Friday was the neighborhood Christsms party. There were some pretty killer deserts at the desert bar. That's always good news. 
Even more wonderful was news of discharge for today.. 
The Milranone made his numbers so much better in such a short time. Modern medicine, coupled with prayer is an incredible blessing. If you have never been witness to a miracle, come to my home. You can meet one (I actually have 4, almost five)... 
Discharge was going great when I got a call from my boyfriend/hubby who was trying to surprise me by putting up the Christmas lights. The ladder slid down the driveway of death, down our house, with him riding it 'Christmas Vacation ' status. He phoned on his way to an instacare, who wouldn't touch him and he was then going to an ER. 
We made it home and began gathering the children from the Hansens.. Then Jeff needed me to spell his folks. I made it to the hospital in time to watch him receive a whole bunch of stitches and see them splint his arm.. Although his leg looked yucky there were no fractures. I feel terrible that he was trying to do something for me and he got so hurt.  It could have been much much worse. I am super grateful it's not. 

We have successfully finished out the week. 

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.