Second Doctor’s Opinion

We had our visit with the second recommended pediatric ENT this morning (Dr. Moynihan).  He asked many of the same questions, looked at the ultrasound and had the same concerns that the workup had little information in it.  He also recommended the CT scan for Amy. 

Moynihan agreed with the first ENT that it was likely the thyroglossal duct cyst, see previous posting.  He agrees that we need to have a better view of other structures in the neck in order to give accurate assessment and see what is really happening.  The ultrasound did not give light to these structures.  The CT will be needed to make sure the cyst is not connected to the thyroid in any way, and to understand the extent and pattern of vascularization.  Amy will be sedated for this exam next week.

The thyroglossal cyst arises from a developmental "error" in utero where the thyroid descends from the back of the tongue, down the throat in a tract.  The thyroid settles in the base of the neck.  If anything gets snagged or stuck in the tract, the result is what we are looking at, the TDC.  The removal is via surgery.

Thanks for asking, emailing, and praying.  We are more comfortable now with the diagnosis, but are saddened that our little girl will have more tests and eventually surgery some time in the coming six months.  Now, the good problem is selecting between two very good doctors/surgeons.  Both Morgenstein and Moynihan are board certified and are associated with Children’s Memorial and Rush Presbyterian and Loyola, respectively.

Doctor Called Back

We received a call from the doctor this evening requesting that we schedule a CT scan for Amy.  The secondary review of the ultrasound raised some questions as to whether or not the "cyst" was attached or associated with the thyroid, instead of just being in the same area of the neck. 

We get the prescription Thursday, then set up the time to do the CT scan.  Amy will have to be sedated.  It is again difficult to not feel anxious when the doctor wants more exams, but we know that he simply wants to be sure of what he is looking at.  Please pray for our hearts as you can imagine another round of waiting to hear more news.

Thanks for your continued prayers for us and for Amy.

Amy’s Appointment

We got back from the Dr. a little bit ago.  I’ll update the blog with details in a bit, but the short story is that the "lump", according to the first Dr., is either a thyroglossal duct cyst, or a cystic hygroma, the Dr. is confident that it is a thyroglossal duct cyst since Amy has not manifested any of the other characteristics of cystic hygroma (you can see in the hyperlink).  Amy looks very proportional, has no defects, or learning disabilities. 

Both diagnoses mean surgery, both are benign conditions.  We are thankful and relieved in many ways.  We still are concerned about the surgery as it is on her throat and is under general anesthetic.

The Dr. today wants more info from the ultrasound that we had last week to see more of the surrounding tissue to be clear.  He says he is confident that he’ll be able to discern with a more complete evaluation of the ultrasound, or seeing the actual images.

Thanks again for your concern and for your prayer.  More to come.  -Nate

Amy’s Second Round

Kara called the referred doctors today.  We have two more appointments with the specialists that our pediatrician recommended. 

Amy will see two doctors the week following Thanksgiving.  The first appointment is Monday at 3:30 pm with Dr. Morgenstein.  The second appointment is Wednesday at 8:50 am with Dr. Moynihan.  Both are ENTs with pediatric experience.  Both will review the ultrasound from last week along with some other evaluation (CT scan likely).

Thanks for praying your outpouring of prayer and email comments.  We’ll keep you all posted, hopefully next week we’ll have a clear diagnosis and prescription for care. -Nate

Our Growth Group

Thank you to all who have shared your support and the fact that you are praying for us, for our little Amy.  Kara is away this weekend and will be coming home tomorrow late.  She is having a hard time being away from home right now.

Thank you, Growth Group, for your considerable outpouring of care and affection for our family.  We again are indebted to you.  This seems so reminiscent of 18 months ago when we were praying for Kara.  We love you and care for each of you deeply.  You have been an encouragement, a blessing, a reminder, an example of Christ to us.  It was a neat time of prayer with you this evening.  We thank God for you.  -Nate

Another Amy Update [Friday Night]

I just talked with Kara who is in OH on a trip with her dad at the National Youthworker’s Convention.  She talked with the pediatrician this evening and then called me.

The ultrasound showed vascularization (it has blood vessels in it/through it) in whatever is below Amy’s skin.  They still don’t know what it is.  Of course, the internet and fear give us all sorts of ideas for what might be going on.  The recommendation from the pediatrician was to see an ENT doctor for further (read: complete) diagnosis.  Kara asked what that meant and they said likely a CT scan, at least, to research what is happening.  So, more appointments with new doctors.  Again.

Please continue to pray.  This of course rattled both Kara and me.  The doctors recommended are covered by our provider, one is board certified, the other is not.  We won’t be able to call to make appts until Monday of next week.  Who knows how quickly we’ll be able to get in to see someone this close to Thanksgiving.

Not sure what else there is to write at this time. -Nate

Amy’s Blood Work

We just had (3:30 pm) the ultrasound with Edward Hospital and the radiologist looked at the scans, then came in and ran scans on Amy personally.  He said, "things like this usually have to do with the thyroid, I’ll submit something to the Dr. right away and you should hear from them (the pediatrician) in a couple of days."

Then, just now (4:10 pm) on the way home from the ultrasound, the pediatrician called Kara and said that Amy’s blood work came back "normal" for thyroid levels, so apparently they have no thyroid concerns, which the pediatrician said is "good". 

So we are waiting to hear about the ultrasound if they can determine anything from what was seen.  Amy was pretty still, so I think they have some good scans to look at and evaluate.

We are sighing a bit of relief right now, but we still have concerns about what the bump is, if anything at all…  Amy always has been a little unique. ;)  –Nate

Amy Update

Amy was great at the diagnostics facility this afternoon.  They could not draw blood from the right arm, so they had to go to the left arm.  Amy wined and cried, but she was tough.  It was hard to watch, as you can imagine.  So little.  We got ice cream after and she was quickly back to herself.  She was wrestling with Grandpa (my dad) all over the floor when we got back from Portillo’s tonight.

We find out results from the blood draw in two days, I assume that means Friday, Thursday will be a bit too optimistic for Drs don’t you think! :)

Anyway, ultrasound is tomorrow and should give us some better idea of what we are looking at as well.  Thanks for the calls and emails. (Nate)

Amy’s appointment times

Amy will have her blood drawn on Tuesday afternoon and the neck ultrasound on Wednesday afternoon. Please pray that she would be cooperative during both situations and that she wouldn’t feel scared. Please also pray that Nate and I would be at peace and wisdom for the doctor’s as they figure out what the lump is on her neck.

Thanks!

Our little Amy

Yesterday Amy had her 2 year check-up. As I (Kara) was sitting (well…sitting and standing and chasing the girls around) in the waiting room, I was thinking how a year ago the doctors told us Amy needed to have an ultrasound on her heart to check her murmur. Even though it was just a precaution, it still felt scary…you don’t want anything to be wrong with your precious child.

I have noticed over the past months (maybe even a year) that Amy has a lump on her neck. It is very centralized, so I have always thought it looked like a pronounced Adam’s apple or something. Well, I wanted to make sure the doctor knew it was there. You can only really see it when she tilts her head back. The doctor felt it and said it is soft, so it can’t be that. It looks like it may be a large cyst or an enlarged thyroid. If it is a cyst she will need neck surgery…if it is an enlarged thyroid, I’m not sure what they will do. (I got the feeling that the thyroid is more of a concern then a cyst. BUT as you can imagine…I feel very hesitant now when a Dr. says something is a cyst since they told me that for 4 years and when I had surgery we discovered it was cancer!) Our little Amy will need to have blood work done and an ultrasound on her neck.

Ugh…my heart just dropped. I feel so sad for her…she is so little. Please pray for us. Pray that this is a very minor thing and that we would feel at peace and trust God through all of this. I am SO thankful that I have healthy girls…I just want them to be 100% and it is so hard to know that something might be wrong.

Our sweet little Amy…