Friday, July 19, 2013

Where Did the Week Go?

That week went quickly.  The boys are all caught up and back on a normal sleeping schedule.  I am getting there, but still tire out during the day.  We were blessed by five wonderful friends who provided us with a meal this week- thank you so much Janet, Mary, Sarah & Josh, Diane, and Jessie!  They were delicious and very much appreciated!

Monday our social worker came for her visit for Lena's 1 yr report and for Reid's 1 month report (a little early).  We enjoyed sharing about how well the kids are doing and talking to her about the trip.  We won't see her again until the end of December for Reid's 6 month post-placement report.  We celebrated Elijah and Jonah's 5th birthday and Lena's 1 year gotcha day!  Due to the hot weather here, 3 of our 4 t-ball/baseball games were canceled and re-scheduled.  We did get to watch Evan on Monday night at his baseball game.  He was glad to be back playing.

Tuesday I took Reid to Children's Hospital for his labs.  They had trouble getting the blood draw- they couldn't get enough from either arm.  The lead had to come in and she got it.  That was 3 tries though.  Reid handled it like a pro.   We then left and started heading back towards home.  We were almost half way home when Rick called and said that we were missing a second appointment.  Apparently there was some miscommunication there.  We turned around and headed back to the hospital where we met Reid's hematologist, Dr. Scott, for the first time, as well as the nurse I have been in communication with for quite some time, Sandy.   I learned that all hematologists have their own opinion and that they are all very different.  I re-learned some things I had learned about on the thalassemia groups I am on, as well as some new things.  They said Reid's spleen and liver are enlarged, but they also said they expected that.    I wasn't given any numbers besides his hemoglobin level, which was an 8.  That means he is more than ready for another transfusion.  They said his other numbers looked good. He said we could keep giving Reid the Ferriprox (said that is what the entire rest of the world takes) while waiting to get on Exjade, which is the medication that will help rid his body of the excess iron from the transfusions. He seems to support Exjade for kids and teens 100%  because he said the compliance rate for desferral is very very poor in kids and even worse with teens...which causes more problems than good. 

On Wednesday, Rick went to look at a 12 passenger van in a nearby town that a big family was selling.  We realize we need this sooner rather than later and this was a good price.  It is higher in mileage, but we are just hoping it will last us 4-6 years.  Rick liked it and because another family was coming to look at it on Friday, he felt we needed to be proactive.  On Thursday morning, he went and bought it!  We now have to sell our Dodge Caravan- our very first mini van.  We are now official owners of a Chevy Express 3500.  I am not looking forward to driving something so big, but I am glad we found something that can fit everyone.  We only plan on using it when we go places as a family and Rick will use it on days that I need to take the Sienna for doctor appointments out of the area.   

On Thursday, we went back to Children's Hospital bright and early for Reid's first blood transfusion.  He was low on energy- I could tell by looking at him.   We got checked in at 8:30 a.m.  Things went well other than the fact that the nurses were not able to get the IV with quite a few tries. We have one tough boy...kind of sad though how desensitized he is. After not being able to get it in either hand due to built-up scar tissue, they got it in his arm.  He was given 287cc's of O+ which ran for just a tad over 3 hrs. from about 10 a.m. until 1 p.m. with no reaction afterwards....they keep them 30-45 minutes to make sure the patient doesn't have any reaction to the blood.  Sometimes they have a fever or hives.  I found our his ferritan (iron) levels are 3,180...normal is 10-60.   His post transfusion hemoglobin level is 11. 

I signed the paperwork for Exjade so we can get started on that once it comes from the specialty pharmacy...we can't get this drug from Walgreens or Wal-Mart. We have our ophthalmology and audiology appts on August 14th- they need baselines yearly for Exjade, the chelation medication Reid will be taking.  We'll have labs again that day and the 2nd transfusion on Aug. 15th...that's 4 weeks from tomorrow's. I am not sure he can go that long in between. He was hypertransfused in China on the 28th and was 8 this week, just 3 weeks later, so I am not sure how he'll be able to make it longer on a normal transfusion. I am also waiting for a liver and heart MRI to be scheduled. I pushed for an ECHO for the same day since I have learned from the other moms of kids with thal that this is important.  We will schedule that for the same day as the liver and heart MRI.  Reid also had another blood test with his IV start to look at his genotyping for beta thalassemia. He also will have a urinalysis with each transfusion.

I always knew how important blood donation is, but after our first transfusion, I have a whole new outlook on it.  Thank you to every single person who has ever donated blood before- it truly is a gift of life and it is what is saving my son's life every month.

Next week we will visit the pediatrician and the dentist.  We'll get an order to run titers to check for immunity from the vaccines he has been given in China, to see if we need to give him some again or just pick-up where he left off.  We will also check his hemoglobin level on that day, 2 weeks from his transfusion.

Tonight we had our first family movie night- the kids will sleep in the living room in a big sleeping bag or on the couches.  They were excited for this!  Looking forward to the weekend and hoping for cooler weather. 

1 comment:

  1. Hi Brooke, I'm Zeke's mom...14 yr old adopted from Zhuhai in March 2012. I follow the group whenever I can and just today saw that you have your new son! What a cute little have a beautiful family. God bless you for all of the advocating you do...amazing work, it is! Hope your adjustment continues to go well.