Thursday, January 31, 2013

Day 1 of specialists for Taizi!

Yesterday morning we left the house at 8:15 am (you know...with a goal of 7; takes a while to get us 11 out the door ;)...and headed on our way.

We stopped at the outlet mall on the way ... with enough time for me to run like a crazy looking for an outfit for Taizi! :) Yes we both thought the other one brought his clothes for the day.

We got to the hospital right on time.  The moment I walked in with Taizi he started crying. Really crying.  He was going a little wild with his head looking at the lights and recognizing it was ... different. He doesn't do well with change at all. For Children's...I was honestly surprised at the stares and looks...seeing as they see all kinds of special needs. Speaking of the families not the caregivers.

We got called in quickly.  He was weighed. Since he was upset, we opted for leaving his clean, dry diaper and 1 piece cotton outfit on.  I think I stopped in my tracks when I saw the weight.

9.4 kilo.


When I questioned it she said their scales are very high tech and tested to be very accurate.

What's the question...? Well I'll have to look but I'm pretty sure that's the IDENTICAL weight at the US consulate in China 3 months ago. The weight he was...naked.


What's the gulp...? we have a child that clearly has special needs. BUT...his caloric and protein intake has been multiplied by about TEN daily. With no weight gain.

Ok. So we went for the Echo (ultrasound of the heart). Taizi was stripped to his diaper and wrapped in a blanket. He's screaming. Not crying. Thrashing and screaming. I half lay with him on the bed holding his legs and hands down. If he can't thrash those...he started banging his head. It really was a 2-man job but I was forced to do it solo. was for 45 minutes.  :)  He was soaked...and I was trying not to be ;)  The tech was so nice and we enjoyed talking over the screams.

Then we went to the waiting room where I fed Taizi and he stopped crying long enough to eat. We were called in quickly and the doctor requested an EKG before seeing him so we did that. Thankfully it was quick because he screamed at the top of his legs for that as well.  By the time it was all over I asked for a blanket to dry him off. It was as if we had dunked him in the bath...that is how soaked with sweat he was.  :(

The Cardiologist and a resident doctor came in. Right away the Cardio. explained his has a PDA. (google it for more details). It's not horribly uncommon. More common in preemie babies. About 8 in 1000 preemies have it and 1 or 2 in 1000 full term babies.  Sometimes, if it doesn't correct itself, it needs to be surgically corrected.

The problem with Taizi is it did not correct itself AND it's been doing this for 3.5 years.  His heart is very enlarged on the left side because of over working and they are quite concerned about the long term, permanent damage to his lungs.  They really examined him and said it's unlikely it's fully the cause of his failure to thrive but it's definitely contributing.  They said to proceed with other specialists meanwhile. We should hear from scheduling this week regarding the cath. appt to correct it. They are concerned about doing this via cath. because of his very small size. He said the specialist (after consulting with him while I waited) is comfortable with attempting it but it may not work and then would have to be a surgical procedure. Being a realist, I always appreciate hearing the 'maybes' and 'what ifs'.

They said one thing that needs to be done quickly is dental work. If he has any cavities this will have bacteria in his saliva and would be a serious concern with this procedure. Therefore we have a dental appt tomorrow (which they will likely have to sedate him for) and if there's any cavities those will have to be filled before we proceed with cardiology.

The Cardiologist also talked seriously about his weight. He asked about the changes we have seen which are definitely limited to his serious hair growth and his fingernails. (nothing below the waist has toe nails, no fat).  And his weight has not changed at all. He said this is quite a concern seeing he IS eating 10x more calories and protein every day and it's not translating into weight or growth/length.   He said he wants me to meet with our pediatrician here locally and strongly consider a NG tube (feeding tube through is nose) to get as many calories into him as we can and build fat.  He talked about the surgeries he will need and the risk of being too underweight. We saw that first hand with Azlan. He was a very chubby baby pre palate surgery but lost an enormous percentage of his weight post palate surgery and had a very rough recovery. Well Taizi cannot afford that.  So...with the absolute best interest of Taizi's development in every way in mind...we will discuss this option.

And...we left with warm hand shakes and comments of how 'honored they were to spend time with me today' which was quite humbling.  No we don't think we are amazing...and yes we do think Taizi was worth moving Heaven and Earth to rescue and God thought so too.

Thank you for praying for this day.  Many of you have asked how we are doing. We love him.  We love on him and we love him.  This is his journey, his story and we are in it.  Whatever it takes to help him thrive...we will do.  We weren't disappointed. We weren't anxious.  We went praying for a diagnosis and got one.  I asked the Cardiologist if we should be excited that "this is all it is" and he hesitated and said 'could it be worse? absolutely.  So..sure. However...I haven't seen a child this old with this problem and that is very concerning.  It's highly likely he has long term, permanent damage. We operate on infants to correct this.  Is it good news? No. But is it life because he's now diagnosed and we'll do what we can to correct it."

This was immediately after the Echo...still screaming.  

This was after all testing, a wet, exhausted, almost content Taizi just laid in Mama's arms for a few minutes.

1 comment:

  1. oh those hospital gowns melt me -- and he melts me! Praying for you today.