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, November 27, 2014

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.

Wednesday, October 29, 2014

The results from reflections

My two budding artists are thrilled by the outcome of their hard work..
Ryleigh received Award of Excellence for her Photo. Which she took with her phone. She is thrilled beyond words. It will move onto regions. Her faux stained glass received Award of Merrit. Her Visual Arts painting did not place but she was thrilled to see it on display. 

Alex's literature piece won Award of Excellance and will move onto region. He also received Award of Excellence for his Visual Arts painting, it too will move on. His Photo did not place. He loved showing off his favorite car anyway. 

Eden's Visual Art Painting did not place. It is tricky for a (at the time) 3 year old to be judged with kids in third grade. It was here very first year entering and I am proud of her for putting her work out there. Her piece was entitled 'Pink'.. As in the world would be a better place if there was more pink.... Totally! 
Next year she wants to enter all of the categories. Heaven help me! Maybe I will have her pick 3. 

Monday, October 27, 2014

Much has happened.. Well sort of...

I am constantly in a state of motion, trying desperately to do something or get something done... So I had the last post written forever ago and realized it "failed to publish"... Now it should be up. 
That caught you up to discharge day. Life has been full of mostly the same crazy.. 
The never ending oxygen battle with two kids. Both want to be free of their tethers and both need it for their health and well being. I would love to ditch it all, vacuuming would certainly be less of an Olympic event. However, I know the benefits for both these two O2 dependants, so it stays, and we battle on. I usually win these battles because I pull the "because I am the mom and I say so" card. MayLee is such a sweet little flower-finding-lip-sucker.. She sucks her lower lip instead of her thumb, finger, and never a binki. 

We have been working on reflections entries and we are hoping for something to move onto regions. Here, Ry is working on her faux stained glass 3D. Titled: Love in the World (I think) The theme for 2014 is, The world would be a better place if.... She also turned in a visual art piece and a photograph. Alex did VA, Photo, which he is working on in the picture.. Titled: More Fun, and a literature piece. His writing was about heart donation. There is a part of the entry form that asks you to write your artistic process. He didn't understand what that meant for literature until I said "what made you think about this" and he put "I am living it". Enough said! 
Cross your fingers and toes that the kids did well. 
Olaf was a huge hit at activity days Daddy daughter pumpkin carving night.. I think he looks awesome! It has been kind of warm and it's sad to say he melted/wilted... 

Eden got two incredible costumes for her birthday and has hardly been clad in anything else. This selfie proves her obsession. 
Microsoft played video games to help raise money for the Children's Miracle Foundation. They asked us to come play too. The older kids had a blast.. MayLee on the other hand was not a huge fan.. 

We will keep her any way!! 

Gator's health is good right now. We are super happy about that. He has been freed to eat his normal diet but has been restricted on his fluid intake to 1 liter a day. That isn't much and he is pretty thirsty. Dylan(home nurse) suggested some hard candies to keep his mouth occupied. On top of that we want Gatoraid for the electrolytes or milk for the good calories but limit water. Very very hard. 
He has loved having his teacher over for class and he had his first French lesson. He said he understood a lot of what she was saying but couldn't form correct responses. I love what our school is doing for us. We know how amazing we have it too. Many of our friends fight with their schools and districts. Ours has been accommodating, patient, understanding, and just plain old nice. You all want to move here just so you can have a Mr. Pullan, Miss Bobbi, Mrs. Heinecke, Mrs. Shimp, Mme. Louk, Mr. Tenney, Ms. Brown, and Mr. Baudry. Can you see the size of just our school team? Yeah, it pretty much rocks! 
There is so much good in the world. Today we were shopping for Eden's birthday party supplies. They were on the next isle over. A conversation started with Gator asking a family if they were getting things for a friend in the hospital. Sure enough they were and he said, "oh man I hope he gets better" then Eden says "gator goes there all the time, he has half a heart, but he's waiting for a new one" I am worried they are overwhelming this sweet family with the what's and how's of it all, I push my cart around to them with MayLee toddling alongside the cart because she refuses to be in it. The mom looks at me, but smiles warmly and says "that must be a long wait". I laugh embarrassed.. I wasn't even sure what I said but something to the effect of.. we are together and not in the hospital, and them doing something for someone who is there is neat... And I hope they get better soon. That was it... Until check out and the cashier pulls out a wad of bills and says that the family left it for us. 
Their thoughtfulness was beyond generous. They get double good deed points. 


Our major goals while at the hospital was to extend our home time. I joked with everyone that this was the dry run for when Gator gets his healthy heart. Most of the time spent hanging out with Gator one on one.. He loves room service so much.. They try super hard to make just what he asks for.. This is lunchables that we created.. 
He got some amazing things to pass the time. One of his very favorite things was a Snoopy Snow Cone Machine.. He invited everyone to get a homemade snow cone for free. I loved that he collected the snow in a barf bowl.. Hahaha.. Don't worry we washed it first. 

Gator made play dough guys too.. 

Yesterday we got everything all worked out and he was able to come home. 
Thank you all for the continued prayers. Sometimes I worry that people get tired of us constantly needing them. But, know that we are so incredibly grateful. 

Monday, October 13, 2014

Wow what a week!

Some weeks tend to make me tired... I take that back, exhausted, discribes it even better. Tuesday Gator woke up to his PICC dressing being ripped off in the night. We had to have it replaced immediatly, Wednesday I took Ry and Eden to their well check visit. Both are growing beautifully. Ry was incredibly embarrassed about the whole thing. Tinkle in a cup???? Are you kidding me??? This is sick people.. She survived. Eden got 4 immunizations. Bless her little heart she was not happy about those either. Then, just because we always need a little more excitement in our lives, I had Doc Mashkuri check out a big ol bump on Gator boy's inner thigh.. We had to drain that sucker and it was as painful as it sounds. We cultured it to see exactly what we were working with and he was put on an antibiotic. The next day was clinic and when we talked about the offending hunk-a-zit-thing it made Tx squirm and check the cultures. Staph!! We changed his antibiotic to a stronger attacker. Friday morning Gator was bothered by chest pain for three hours. What an annoying thing, especially since he had been planning a super bodacious dude camp out with Papa C, the uncles, Wells, and daddy. He must have conviced himself that he was fine because he had a really great time till the next morning at breakfast the pain came back. I brought him to the hospital while Eden and Ry went to Idaho and May and daddy hung out. Gator was admitted to the hospital. He needed to be watched a little closer. I had a ticket to a conference I was super excited to see. It was such a refreshing celebration of trials and it buoyed me up spiritually. Meg Johnson, Hank Smith, and John Bytheway were the speakers.. The only thing that went wrong is... During the very last speaker who happen to be Hank Smith I had my phone on silent but down near my purse so I can watch it. It starts to ring and it's the hospital. About 49 different thoughts went through my head all at one time.. He's really sick, he's dead, they have a new heart for him.. You know little things like that. I contemplated not picking up. I knew how rude I would look. I was on the fourth row right in the middle.. I just had to make sure all was well.. I got up and ran out.. Mortified!!!! They had a few questions about medications and wanted to make sure everything was good.. Whew!!! 
I waited in an incredibly long line to apologize to Hank Smith for running out like that. He was super nice and wasn't even mad. 

Sunday was perfect.. Gator and I and miss MayLee the wiggle. Went to the branch at PCH.. A-mazing!!!! 30 minutes is the whole meeting. Pfffffsshhh! I could do that time frame anytime. They don't need it to be longer because it's like taking the spirit and magnifying by like 10,000. I have already professed that I am sure that angles walk the halls of the hospital. Well, where do you think they go for church? Yeah it's that good. If you are ever at the hospital on a Sunday.. Starts at 10:30 and you may come in your PJ's and slippers. They have never turned Gator away for wearing his. Gator also had a primary lesson from his amazing new primary teacher Sister Christianson. Bro C also came up. She brought Gator's primary program part. We are coming up with a way for him to be included even if he is in the hospital. Don't you love technology? With a CD of the songs to practice we are excited to be part of it. It is amazing to be thought of. Gator had another Bortisamib treatment. His PRA went slightly up..69... We can still rejoice because it's not all the way back up and hopefully the meds will knock it back down again. 
We also found out his BNP went up to 1000 from the last check it was 600. 

Question: What is a BNP blood test, and should it be done on everyone with heart failure?

Answer: A B-Type natriuretic peptide is a naturally-occurring peptide produced by the body. A peptide is a group of amino acids, the building blocks of proteins, and this particular peptide is secreted in response to certain stress; this one in particular is the stress in the heart, particularly when the heart is stretched.

One of the hallmarks of heart failure is when people hold on to too much fluid. When they hold on to too much fluid it begins to backup and literally stretch the heart. That extra stretch causes the cells of the heart to excrete BNP and that can be measured in the blood.

And the higher the BNP generally the more fluid someone maybe holding on to, although it does vary a little bit from person to person. But that why it can be useful in the setting of somebody being short of breath to distinguish whether the shortness of breath is due to fluid being held on because of heart failure or whether it's due to lung disease.

We think the reason Gator was having chest pain was because of the heart swelling. 

Today we relaxed.. He was stoked because Doc Everett reduced his sodium ban. Can you guess what he chose?? Top Ramen. He slurped and yummed through the entire bowl. Auntie Pres had the girls today, she even did all my laundry. Bless her! Tomorrow she goes to spend the day with Gator while I am with the girls... Daddy is up there to hang with his boy in the evenings.. How he managed to organize life, work, church, and still be so dang amazing is beyond me. Sometimes I feel like bowing down and saying "I'm not worthy, I'm not worthy" but I shouldn't give him a big head and so I refrain. 

Pray the antibodies will go down again and also,  in the midst of grief a family will choose organ donation.