"This season of your life is like no other, it is short and sweet and will be gone before you know it."





Sunday, September 17, 2017

Family Day 2017!

Four years home.

That's as many years in America as he lived in China.

We always anticipate this day and have been talking about it all week! Cai gets to choose his dinner of choice and he ALWAYS chooses Chinese. Well, not this year, he choose Japanese because he just loves a good hibachi show:) I am so very thankful for this middle blessing and how proud he is that he is adopted. When the waitress asked who was paying the check, we told her to give it to him, he was paying because it was his special day:) She asked if we were celebrating his birthday and he said " NO! TODAY IS MY FAMILY DAY, IT'S THE DAY I WAS ADOPTED AND CAME TO AMERICA! So loud and so proud. It's always nice to celebrate, stop and pause about what a humongous blessing he is to our family. The day you came into our family, you made it complete Cai! Today he told Corbyn our family was nothing before him:)

Blood brothers. Not connected by DNA, but by God's love.

Proud parents!!


FOUR YEARS HOME!!


 


Callie wore her Panda clip on earrings:)




Looking at his China memory book!


Wo Ai Ni Cai!

Thursday, September 14, 2017

Hurricane Irma Transfusion 2017

It' been a while since I "dumped" my pictures on the blog. But yesterday was a rerouting of perspective that I want to remember. There have been a lot of #irmaloosemymind moments these past few weeks preparing and weathering the storm with family, work and always the medical concern with Thalassemia. To be honest, I don't worry much about hurricanes. We have been through many. I expect loss of power and external damage and am prepared to leave if called to evacuate. But I am always worried about not being able to get my babies blood. I don't mean to minimize any loss, especially homes, because my heart aches for what some dear friends are going through, but lives are most important.

This is the first time I've seen our blood bank actually suspend blood donations. For days. Really, there was no choice when so much of Florida was being effected. THANK GOD for other blood banks bringing us blood! Long story short, the boys (especially Corbyn) dropped at a faster rate during the storm. I could tell by his demeanor, paleness and lack of energy we were not going to be able to wait until their clinic was functional again to get them a transfusion. When I say these people went out of their way to make sure my boys got blood, it was truly an act of teamwork. Yesterday at work I had a nurse call me FROM HOME coordinating a plan, a doctor call me FROM HOME giving us our options and a plan in place to receive blood at our children's hospital the next morning. Two little beds reserved for Thal 1 and Thal 2 and my only plan was to BE PATIENT and prep for a long day. I asked sissy if she wanted a babysitter, but she insisted on going to the transfusion where she is always tons of help. She gets the boys blankets, water, their snacks etc. and yesterday a nurse dubbed her their "little mama". I only had to remind her once (in our 10 hour stay) that she choose to come.

I decided I would treat myself to starbucks on the way to the hospital because it would be a long day and we always have Chick-fil-A as a special treat on transfusions days so they skipped breakfast at home and we headed to the hospital. The first sbux was closed, then the second was closed and then CFA was CLOSED! Many of the traffic lights were out so these 4 way stops were adding on minutes to our drive. An hour later, we arrived at the hospital with no coffee and no breakfast...awesome mom status. That's ok though because we like to go to the CFA at the hospital so I planned to check us in and go get food while we waited on our room. CFA WAS CLOSED at the hospital!!! Dear Lord...first world problems. We went to the cafeteria, I got blah hospital coffee, they got breakfast and Cai opened his cafeteria boxed milk all over my shoes. Just a regular lucky day:) And then our room was ready! We headed to the oncology/hematology unit and it felt like walking into the Ritz Carlton of hospitals. They had a bed, a couch and a TV, our own bathroom and privacy! So. much. better. than our regularly cramped transfusion bay where we are separated by partitions, playing IV pole gymnastics to use the bathroom, fighting over having the light on for some to color or off for some to sleep, trying to get the video games to work, listening to social workers come in, tours, etc. etc.. IT WAS OURS!!! ALL OURS!!! Where is my key card, I'm staying here for life. Okay I'm getting carried away. But really, it was a long day, but we're used to those. I diverted my mind back on my plan to be patient. As long as my boys got what they needed I didn't care how long it took. At their clinic, we have it down to a science. We do labs the day before, so we know how much blood to order, they are matched properly and we can just miss as half day of school. We get there, the blood is usually on it's way and we are moving with a hopefully 4-5 hour turn around. A lot more goes into the safety of being chronically transfused vs an emergency transfusion. We worry about the built up antibodies, very specific matching, transfusion related reactions and more because they will always be exposed to more blood.

Starting from our stat labs that morning (which really were stat!) the nurses came in and asked me good pertinent questions! What size gauge needle does his port use? Have they ever had a transfusion reaction? How much volume do they usually get? What rate do they typically run it at? Why does he have Emla on both arms? WHAT?!!! they are wonderful here!!! Different hospitals have different protocols and they listened to me and we were on the same page with everything that was done.
Corbyn has Emla (a numbing cream) on both arms because sometimes they cannot get a vein on one arms so they have to move to the next arm. He won't be accessed in other areas. When I told the nurse we have one nurse in hematology who is the teeny-stubborn-vein-finder nurse, she said no problem and called in the PICU team to access him. It brought back memories to when our clinic would call in the PICU team when he was a baby, but then he had ports from 2 years to 8 years old. the PICU nurse, again amazing, asked if he wanted the J-tip (another type of numbing agent) that he ABSOLUTELY HATES and gave him his other options. She got it on the first try! And I told myself I wouldn't cry so I told the PICU nurse how grateful we were that she was working today (they are a select few awesomesauce team) and told her to leave before I hugged her. The child life came in and I think Corbyn thought she was *ah-em* pretty because he said she could stay for a bit and he usually says no. After labs came back, and seeing that both of their hgb was lower than it had been in years, I was reassured we did the right thing bringing them in. In a few hours, the blood was flowing and we were on our way to new life. Literally the paleness faded, their color came back and their tude came back just as quickly:) Joe came for lunch and then after work to relieve me and Callie and I headed home. In the lobby as we were walking to the garage we ran into the boy's phlebotomist (takes their labs). We started talking about how we made out in the hurricane and she told me she was supposed to be off because the clinic was closed but they called her and asked if she would come in to work on a handful of patients specimens in their lab. I was like HOLD UP...you came in for us? She said "yeah, I love my boys. When I heard you guys needed me, of coarse I came in. I'm not taking their blood today but I'm working on them in the lab with a few other oncology patients. WHAT?!!! It hit me like a ton of bricks how much my boys are loved here. How each patient is valued. How I love them like family too. And how each and every step was necessary to make this huge thing happen. From billing (hospital billing/charges is much different than an outpatient setting), to coordinating, to showing up for these little lives! I'm still a bit overwhelmed at the collaboration that went down and goes down every day. We are so thankful.




But seriously...does he not have the best smile ever?











I will always take the snuggles