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!

Friday, September 12, 2014

Very small update of Gator Boy

Yesterday was clinic... Everything checked out. He is doing better on his higher dose of Milrinone. Its the small miracles that make our day.
We were really excited to see Dr. Molina this visit because the gummy hearts..(and other parts) finally got here..They were well received. In fact, the heart is the actual size of a newborn heart that they perform surgeries on. So awesome!

He happened to mention in passing that he experienced a pinching sensation or squeezing feeling in his chest a couple of times. So they decided to have him wear a 48 hour halter monitor. Oh man, we were all caught off guard when he started to cry. Things just caught up to him I guess. It was more then he could manage. One more darn thing to carry around. One more silly reason to feel weird or wired in this case. We know it's short term. We know it helps to better understand what his body is doing... But, it was just the last straw on a boy who has been super brave. He pulled himself out of his sadness and hooked up.
We push the yellow button if he feels an episode...

Good thing Elizabeth was there with a special gift. A 49rs hat and shirt. He is proudly wearing today.
He is so excited to show his buddies the Hansens next door.

Eden is so funny, she wants to be in on all the business.. The other day May was throwing a royal fit. I was trying to distract her from what ever it was that was causing her such grief. So I said.. Let's play eensy weensy spider.. Did the little game and got her happy, crawling spiders up her arm.. Washing them out.. Eden parks herself right in front of me, offers up a foot and says "mom, let's play that game were the go to the store, you know, the one were they go to war-mart" I died laughing when I realized she wanted me to wiggle her toes for 'This little piggy', who goes to market. 
She was proud as punch, when she made me laugh that hard. 

Birthday girl Ryleigh

I only feel old cause my baby turned 10. She moved into the double digits... And... sniff, is a whole decade.... Where did all the time even go???? She officially moved into tween status. And boy, does she own it. She is all huffy, and stompy and all kinds of busy with activities. She is also super helpful and my best go-to-gal.
On Sunday we celebrated in Orem with the Clawson clan and Monday (her actual birthday) we did lunch at Golden Coral with Grandma and Papa Homer. Her favorite because she can choose from so many things.

We are on an even year so that means we are busy planning a friend party. She wants it themed Paris late night. I have been on Pinterest to search for good ideas.

She tracked back into school on Wednesday. We decided to wait until today to take her class treat in. As per tradition we brought her lunch to school.

 She was mortified that I made her wear a sign. (insert evil laugh here)
 Lucky for her daddy would wear her sign. We left Gator at Miss Natasha's so he wouldn't get any germs from anybody at the school.
Subway done the right way is a chicken bacon ranch.... MMMMMMMMM
She also passed treats out to kids in the lunch room. 

Walk for Healing Hearts

On Saturday the 6th, our family participated in the Walk for Healing hearts 5K and family fun run.  Jeff and I did the 5K... Let me just remind everyone that I am NOT a runner. Jeff finished his in 28.5 minutes... Me.... well lets not document the time for me. I did not die and I finished. Jeff came back around and encouraged me to finish. Grandma did the fun run with May and Ry... Papa stayed with Gator and Eden.  This is Gator's heart buddy Thatcher. He was obviously not happy about taking pictures.. Stink!!
 Here are the big kids... Ryleigh, Ma$on and Sawyer.

 Crossing the finish line
Playing at the park...

Parts of the Whirl Wind

Wednesday the 3rd Alex was discharged. It takes nearly all day to discharge because of all the coordinating that takes place. I meet with the discharge planner, the pharmacist, home health nurse, organize and pick up meds, pack up the room. Room packing is a huge chore alone. We are going to need a moving truck for a stay longer than ten days, I tell ya. We picked up the girls who did not want to leave the helpers. They NEVER want to leave the helpers. It is a blessing for me to know they are so happy and content. I love that they are being taught, loved and enjoyed while I can't be there. Surely that is what is meant when they say "It takes a village to raise a child". Thank you my village.
We were all kinds of out of oxygen. I had to have three tanks delivered late Tuesday night because May needed some the next day and we had nothing. When the delivery showed up we found this momma spider hanging out with our empties..... EEEEEEWWWWW..... I didn't even want to get near the her. The delivery guy told me he would get her. I don't mind spiders as long as they aren't bigger then a quarter. She was beyond my size limit. So I grabbed him a shoe. When he smushed her a million tiny babies ran off her back.... It was an explosion of baby spiders... Gator said "that gives me the Weebee Jeebees" I agreed.
 MayLee is cord free. She has tan lines where the tubes do go.
On Thursday Eden started Preschool... I lingered too long when I was dropping her off because she said.."See ya momma...... Bye Bye..... Mom just go now"
When I went to pick her up she said.... "I want to call daddy" Huh... gotta report to her best buddy.

 My little trouble maker is into EVERYTHING..... As you can see she takes of her oxygen and then goes to do something crazy. I follow her tubes to find her and she isn't at the end... I do have to give her props of the proper use of mascara. She knows where it is supposed to go.
 Nearly the entire wipes container.

CAUGHT!!!! Oh Snap!!!

Wednesday, September 10, 2014

We've been doing good

Last week was a whirl wind. 
Gator's PICC replacement went great. He only had one hiccup. He went into SVT when they moved him from the table to the bed. SVT=super ventricular tachycardia=really fast heart beats.
Just as they were calling support, Gator auto corrected. 
Now we are good as new! 
Leaky PICC.. Above the purple and white things is were it was broken. 
Passing time NPO----
He just got his CHG bath.. Before any procedure he gets a special bath to help keep the germies away. 
Tempted to put mascara on these bad boys. 
He has to watch everything with one eye closed. He tells me I have four eyes and two noses when he wakes up. 
Feeling good
Really good!!!

Tuesday, September 2, 2014

Keep the bag packed..

We have had a fantastic 24 hours.. Sunday we got a new niece (not to be confused with the new nephew we got two weeks ago, hurray babies) Ryleigh gave a talk in church, so did Jeff and I, MayLee went to nursery for the first time alone, and Alex got discharged.. Hurray!!
 Monday we got a ton done. Backyard mowed, weeded, and a general tidy. Sheets changed, floor swept, and dusting done. Uncle Chais and Auntie Jess came for a visit. Gator drove the lawn mower. The girls wanted in on that action. 
Eden played stay off the alligator infested grass.. She made Jess and MayLee play too. She is kind of a lot bossy. 
Plus also, they played video games on Chaison's phone. 

 We shopped for the hot dog roast tomorrow and got a few things for our hamburger party with grandma and papa. 
The kids even had yummy frozen yogurt. May missed her nap so I stayed home to put her to sleep. We were tucking Gator in when he asked Jeff if he was sweating or crying.. There was a wet spot on Alex's bedding. We traced it back to Alex's PICC line. Oh no, the darn thing was leaking and not in a place we could fix it. After a call into Dylan (our home nurse) we made the trip up to PCH for some help. They placed an IV to make sure his Milrinone keeps going and have made a plan to fix it tomorrow. Not sure yet, what that will mean other than not fun. 

Friday, August 29, 2014

It... Well.. This...

Yesterday at clinic we were going about our regularly schedule activities, blood draw, weight, height, check up... We hooked up with a new friend Teagan #2.
And also saw Miss Elizabeth..

Alex has been feeling kind of slow lately. When we visited with our team explaining his extra sweating, his poor appetite, his growing fatigue... Coupled with some of his blood work there was a big concern that Alex was failing and needed a little more tweaking then they felt comfortable doing in office and at home. 

So.... We were set up with a room in the ICU. Alex was doing good morally until he realized were we where and got frustrated by the circumstance. I explained that he needed to change his Milrinone from .5 to .75 and the likely hood of staying in the ICU was small.. 24 hours... We also added Spectra or Septra (I haven't actually seen this drug yet so I don't know what it's called) but we know it helps him not get infections. We have hit his immune system and need to be pro active in keeping him healthy. Flu season is creeping up on us, our whole family/extended family have pledged to help him stay healthy by getting flu shots. We can't get the mist because it stays "on you" for 14 days.. So he could potentially pick up something in those 14 days. Boo! 
Once settled in we saw Miss Jen who helped make things way more comfortable. This was an out of control time. No bags packed, no green snugly blanket, no toothbrush. So having Miss Jen here made everything better for Alex. I made it home last night to my mom and sister Pres.. They are awesome and have taken care of the little people. Jeff came up to be with his boy. Then home to sleep. While Gator is in ICU he has a nurse with him all the time so he stayed here without being scared. He had a great night and morning. He has ordered everything from room service.. 
He is gaming with Estiban from the playroom! He is tolerating all the changes.. We are doing well.