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.

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. 


The Redhead said...

You are amazing my friend......if you even remember who I am :)

Paulsen said...

Reading this keeps me grounded. My little trials in life are nothing compared to what you and your family go through everyday. Our prayers are with you ya..

likeschocolate said...

You can say wow what a week! Hang in there miss! Heavenly Father is right there with you!

Jodi said...

I love ya girl! You inspire me and thousands of others with your grace and faith. Hugs!

sarahgurl said...

Thank you for the update and I love knowing what to pray for specifically. Love you Brynn

cfarr said...

Church at PCH is amazing! Such a strong spirit there! Prayers for your family and sweet boy!-Carrie(child life)