A Little Something Extra

Thursday, May 1, 2008

Endocrine

Since we don't have enough going on these days, we decided to add another trip to Milwaukee for Micah to see an endocrinologist (sense the sarcasm?). Seriously. I was looking through some paperwork from the NICU at TC and saw that he had an elevated thyroid level at his last bloodwork drawn before he went back to Milwaukee for his g-tube. No one ever mentioned that to me. And thyroid issues are fairly common in children with Down syndrome.

Early last week at his interim pediatrician's appointment (congrats, Dr. R., on baby boy #3, but your timing for maternity leave could have been better :-) ), I asked when they would test his thyroid level again (not knowing that he had elevated levels while in the NICU). He told me they would test it again at 6mos and one year. But then I found this information in his paperwork and called him on Friday. He said to bring Micah in on Friday evening for a blood draw. He got the results Saturday morning and called the on-call endocrinologist at Children's who said they should see Micah early this week. Nice. I'm glad I noticed it. But who wouldn't have noticed it. That's why lab reports show "in range", "L", or "H" by the results. Strange how the multiple H's weren't noticed by anyone else. Maybe strange isn't the best word. Maybe crappy is a better word. I'm tempted to say irresponsible, but I hate to point fingers.

Anyway, Micah is now on synthroid. Because he doesn't take enough medications...

Sorry for the negative ranting. Maybe I'm a bit stressed about our upcoming week.

9 comments:

Jonathan said...

Jennie,

This is outrageous. I'm so glad you noticed what the doctors failed to notice. Crazy. And what can you say...they DID make a mistake. Micah is really blessed to have you as his advocate and mommy. Will this influence the date of his OHS?

I'll talk to you soon.

Love and prayers from all of us.

Kris said...

A big fat YUCK. As a mom who "discovered" my own daughter's heart defect while reading through NICU notes, I can relate to your feelings. Go ahead and point fingers cause this is their job. Join the club. I will never again put 100% trust into the docs catching everything. We now read all labs reports and double check everything. On a positive note, we have found that the specialist are much better in this regard (cardiologist, endocrinologist, ENT, etc..) I'm sorry you had to go through this. Erin's latest thyroid lab also tested high; we are testing again in three months. You are going thru the toughest times you may ever have as parents. If you can get through this with your two feet on the ground, you can get through anything! Trust me, your whole family will have stronger, more perfect hearts when you are on the other side of this surgery! You are doing fabulous Jennie. Micah is blessed to have yo as his mom. You are blessed to have him as your son! Many prayers. Kris

ATLKrafts said...

hey girl-- hang in there. i am glad that you found the thyroid results as well. there was a lot going on, and if the tsh was drawn for the surgeons, they may have noticed, but not done anything (not their area). give them (me, us) a teeny break. God gave you Micah because He knew Micah would need such a strong advocate. Plus, he didn't have thyroid symptoms, right, so that is technically "subclinical"... but very important in the setting of heart surgery, you are right! We love and miss you terribly! C, A, A and ?

Christine said...

The similarities between our kids’ medical issues are amazing. You have probably discovered the fun fact that the synthroid does not come in a liquid form. If you want to chat about how we dealt with giving a baby with feeding issues a pill, please feel free to give me a call or email me.

On a more positive note, at the time of Lilja’s OHS, she was on three heart meds, two gastro meds and the synthroid. Today, it is just the synthroid, and it is no big deal; we just give it to her with her breakfast.

We will be thinking of you guys and praying for Micah on Monday.

Anonymous said...

Micah will be in my prayers this weekend and Monday, he is such a doll and I will be praying for a speedy recovery.

Melanie said...

That would make me angry!
We will be praying for Micah on Monday.

Andrea Marcks said...

That's horrible they missed something so important. I'm so glad that you are on top of everything and caught it. How irritating with everything else that is going on. I continue to pray for your family. I will send some special prayers for Micah's surgery and recovery. I can't wait to hear how well he is going after the surgery!

Jennie said...

CK - Definitely not blaming your whole profession... but the labs were ordered and drawn in the middle of February so it was well past when the surgeons were paying any attention to his recovery. The neonatologist should have done/said something, or the cardiologist, who might have actually ordered the labs that day. The bigger issue is that his T4 was elevated on 2/19 and that should have been a bigger red flag than just the elevated TSH. They should have at least ordered repeat labs.

But you're right. Too many cooks. And we still deal with that today (more on that in my next post).

CW - You're right... our little ones' health issues are eerily similar (especially two years apart and living in the same town of 25,000 people). I would love some suggestions about how to get a crushed pill to go down a baby's throat who rarely takes food orally (now that I think about it, maybe I'll just ask Mark to do it at the 4am feeding when Micah is hungry... that's the only time we know he'll actually take some milk by bottle).

J - No, it doesn't change his OHS date. Thanks for your prayers!

K - Can't wait to "meet" you again. It's been a long time since 2W Akers Hall. I hope Erin's appt with Dr. S. goes well next week.

Anonymous said...

Two words "pill crusher"!
Works awesome for us. I pour a little juice (used to be milk/formula) into the pill crusher, mix it up and pull it up into a 10cc syringe and give it to Julia by mouth before she eats breakfast. Her pediatrician says as long as she's getting it the same way and time every day that that's the main thing. Hopefully Micah will not be needing that 4 am feeding when you get home. After Julia's OHS-she slept through the night after bringing her home. I think she too was tired of being awoken every 3 hours to feed. Hopefully Micah will feel the same way about sleep!!!!
Prayers for Micah and your family during this time...it's bringing back a lot of memories for me-kids are amazing!!!

Blessings~
Danielle (Jim, Helena and Julia)