Thursday, February 21, 2013

Taizi~heart and health.

We went back to Seattle (oh so familiar these days) on the 18th.  We stayed with friends for the night. Seriously...you wouldn't want 9 kids on your living room floor...? They were awesome! Our hosts...I mean ;)  And the kids. They ARE awesome. ;)

Actually it was funny b/c they had beds set out ALL over the house for the kids and we put 7 of them all in the one section. Hey...that's their sleepover ;)

We got up and had breakfast and took Taizi, Zihao and Izrael with us to Children's.  It was about a 40-1 hour ride.  We got there right on time and hardly any wait. 

Dean went with Taizi to get weighed and when he came back he said "9.7kg" I asked if he was without clothes and the nurse said "nah, we don't care". No no no. This weight will be recorded. Back they went to a diaper-only-weight and lo and behold...9.5 kg.   2 weeks of extreme fortified foods...not one ounce heavier. 

Dean dressed up in OR garb to go in with Taizi until he was sedated. He was so much better this time in the hospital, assuming it's because Daddy was with him!

After that, Dean took Izrael and Zihao back to our friends while I hung out.  It was about a 2 hour procedure in the cath lab.  Yes they repaired a hole in his heart through a vein in his leg..!  Crazy.  They paged me to let me know it was done. The Cardiologist met with me and said though 99% of these patients go home 4 hours after the procedure, Taizi's hole (or extra valve) was very large and he would need to stay all night to make sure things stayed put. 

A while later I was led to his room, and I sat there solo.  The nurse came in and said he had a mandatory 15 more minutes in recovery but the PACU nurses were struggling with him as he was quite upset.  So she led me there. I walked in, he was wailing...I could hear him across the room. I got in front of his face and he instantly laid back down and stopped crying. It was a pretty amazing moment and the nurses were all melted.  It was extra amazing seeing I'm not Daddy and he calmed just by seeing me ;)

He was led to his room where he laid in his crib hooked up to IV.  He honestly seemed more than comfortable in that crib and I began to see a peek into his previous life. His hand movements only became more extreme as he wrapped his fingers in all sorts of ways around the crib bars.  And ... his contentment there...was an eery reminder of the life he has lived. He never once sat. Never once rolled. He just laid there doing all sorts of things with his hands for hours. 

He slept better than I did. The IV machine went off regularly. And ... well...21 weeks pregnant on that couch...I've had more amazing nights' sleep ;)

In the morning they came in and did an echo and we got the green light to go home. His heart sounds amazing, you can't even hear the murmur anymore. They said it can 2 years before the flow stops completely...well the echo showed no flow at all. Pretty amazing.

We came home last night.  We were in the parking lot of the outlet mall on our way home when a guy came up to us and I knew he was familiar but not sure where. He called Dean by name and I took a guess with his last name ... and got it right. How random! They are living in Boston and recognized Dean and it was only proven by the van full of kids that proceeded to get out ;)

We made it home in great time, so great to be traveling at dinner time instead of midnight! 

This morning I received a call from the Cardiac nurse who checked us in to surgery yesterday.  She was so great. Checked in on us and then got soft and said "I wanted to take a minute and tell you how blown away I was with you and your husband.  I wanted to say I think you both are just amazing for doing what you are doing...thank you".

We talked about his bruise from the procedure. It's rather large, especially for his size. So we'll keep an eye on it.

Later in the day I called our nutritionist at Children's.  She's great.  She loves Taizi...and us.  I told he's consuming 1650 calories a day. That is 174 calories per kg of body weight. And has gained...not ... one...single...ounce.  She was speechless.  She really truly was speechless. They do not feel a PDA could account for this. Slow weight gain...? Sure. NO WEIGHT GAIN despite dramatic efforts...? No way.  She actually told me we could slow back...b/c we are almost force-feeding at the end of the day to get this amount into him and he is FULL!  She asked me to call the cranio facial doc. 

I did. She answered the phone, so excited to hear from me. Seriously...we are loving our team of doctors right now.  We talked about him, his PDA procedure, his weight etc.  She was not happy.  I asked what she thinks about my gut feeling that he is much much older than 3.5.  She asked if I had any way to concrete that ... I said I don't...however...the other night I looked in his file and found his "finding photo"...the photo of him that was printed in the paper to find his family when he was located.  Deep breath. It is not...him.  It is simply not him. It is a cleft affected child. With a right ear that is lower and deformed.  The left ear is neither lower nor deformed.  Um...it's impossible to be him.  Woah.  The doctor was really taken back by this.  I talked about how his skin is really wrinkly.  His hands and feet and even his face. I've said from moment one that I don't think he's 3.5y. Yes he's tiny but he has an older look and his skin...I just don't think he's that young. I could be wrong. But...combined with the fact that the doctor is concerned his body is simply done growing...she ordered a bone scan to date his bones and see what age it comes up with. 

And a slew of blood work and testing.

She talked about his kidney scan and how his kidneys were ultra tiny (no kidding, HE is ultra tiny) and there was a concern. While initially thought to be minor ... he has high blood pressure...and the weight issue...they are taking the kidney concern more seriously.  So some of the urine testing will be looking for further markers of kidney issues.

This is where we are.  So all is good with Taizi. We are so thankful for his heart procedure and to have it behind us. 

Azlan update:  I have no idea what to say or if I should say :( Day 6 after stopping antibiotics for the first time since April 2012...the site is inflammed and swollen.  We went to the pediatrician today...who was all "we will find a surgeon to remove it if yours refuses" in the beginning and he was a different story today. I actually started crying in his office and he turned and walked out and closed the door.  Noooooo problem. 
I wrote our infectious disease control doc friend and he replied feeling our frustration and said really right now we have to wait and see if it progresses as he suspects it will so we can culture it and then go from there.

That's all I'll say.  And that I came home and cried. 

And that my husband came home with a DQ icecream for me. 

And...that at the end of the day...every thing I'm fighting for is worth the fight.  So I'll save my fight for the battles that count. And when comes to our family, and the health of our children...those are the battles worth having the energy to draw our swords for. 

:)

6 comments:

  1. I am not sure how I even found your blog. We have one biological child born with spina bifida and one child we lost at birth due to a rare nongenetic birth defect. We have a heart for adoption and I just want to say that you guys are a blessing. Praying that the Lord will give you the strength to fight for your kids and continued blessings for your whole family!

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  2. What a difficult journey poor Taizi has and I am sorry about Azlan too.
    But I just wanted to say "AMEN " to your last paragraph. You are doing a great job Mama, with the Lord's help.

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  3. Julie~thank you for your sweet note! I'll pray for the journey that lies ahead of your family. I'm sure you rarely hear a thank you for all you do, day in and day out...so here it is...thank you! You are amazing and in that one little bit about your family I can tell you have been through a lot. And you haven't given up! I look forward to getting to know you more!

    April~one day at a time. :)

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  4. Janice, I'm praying & thinking of you & your family. One step at a time.
    Heather B

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  5. Janice, you are an inspiration. Praying for Taizi and all of your sweet family.

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  6. Thank you Heather and Shannon. Thank you for praying.

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