Well, let me preface this post with the fact that the Duke visits went well based on the test results. But Claire did not fare so well herself. It was like Nightmare on Elm Street (except it was on Erwin Road where Duke is located) screaming and flashbacks for her. Hence the post title.
Anyways, we left home around 4:30 am to head to Duke for her first appointment at 8:30 am. Claire slept the entire ride to Durham which was great! We even got there early enough we were able to eat breakfast in the cafeteria with Aunt Amanda as she was getting off of night shift.
We then went over for Claire's liver ultrasound. She was totally fine until she realized what was getting ready to happen and she totally panicked. Freaked out, screaming at the top of her lungs, kicking the US tech, pulling the US probe off of her belly, etc. It took me holding her and her arms back and my mom holding her legs down while she screamed, cried, and trashed around to even try to get any good images.
It's like she was having terrible flashbacks and nightmares. I can usually sit and watch the images and tell whether I see any cysts or not or if anything looks weird. But not yesterday. It was so sad because she was so scared. And I felt horrible as I kept trying to reassure her that it wasn't going to hurt while I was trying to restrict her (another thing she hates). After it was over Granny took Claire and she looked over at me with this look in her eyes like it was all my fault!
The tech said she couldn't even find the small cyst that the surgeon had left after the liver surgery. She looked for it twice. So I am not sure if it's gone or if she just couldn't see it because Claire wasn't being still. I am praying it's just GONE! Wouldn't that be wonderful!!!!!
Her next appointment was for an echo and wasn't until 11:30 am. So I politely begged the US tech to see if they could go ahead and do the echo now since we were right there and in case they had to sedate Claire since she wasn't allowed to eat for 4 hours before her US. They kindly obliged and we headed over for the echo. You can see in the picture below just how pitiful she looked. :(
The really nice receptionist found out Claire liked Elmo so she picked out "Elmo Saves Christmas" DVD and played it for Claire in hopes it would distract her. That didn't work. So she left and came back with a small Elmo with a backpack on his back. Claire liked him and said "Eh mo" (Elmo).
The echo went about like the US did so there are no pictures. The nice receptionist stood in there singing Elmo songs and holding a flashing light trying to distract Claire. She was so sweet! They got the images of her heart that they needed without sedating her (thank God) but she was still so upset.
By then it was only about 9 am and her next appointment wasn't until 12:45 pm! We REALLY did not want to just sit around Duke for 4 hours waiting for the next appointment so I went on and asked/begged to see if they could work her in earlier. And they so graciously did! We were called on back a few minutes later and of course she freaked out all over again when she was weighed and measured. She weighed about 22 lbs and measured about 29" long. She calmed back down and didn't freak out when the cardiologist came in. But when he went to examine her - yes we were back on Elm Street! Screaming bloody murder! Poor thing. I hated it for her.
The cardiologist said he had viewed her echo and it looked the same as last time so that was good. She still has some pulmonary stenosis which is why you can still hear a murmur. She also had moderate leakage from her pulmonary valve which he thinks is ok. This is the part they will watch to see if it needs to be replaced in 15-20 years. He said her branch pulmonary arteries all looked good too. He also said the right side of her heart looked like it was functioning well too. So all in all, good news! We don't have to go back until June! It will be the longest stretch of no doctors appointments for Claire ever!!! He also said that it is very normal/typical for a baby who is Claire's age and who has gone through everything she has this past year to react the way she was. He said he would be really concerned if she WASN'T acting that way.
I hope to hear from the liver surgeon in the next week or so after she has time to view the ultrasound. If not, don't worry, I will be calling her!
I also discovered Claire is scared of elevators yesterday. I don't know if it's the motion or the being closed in part. But she tried to claw her way out of her stroller every time we got on one.
We then headed over to visit some friends in ICN. Nurse Susannah and Nurse Rachel (2 of Claire's primary nurses) were working so we visited with them a few minutes. Claire was happy then!! She wanted them to hold her and she just crawled all over the furniture and talked/babbled. It was good to see both of them! We missed out on eating lunch with Nurse Marie, but we were all exhausted, so we wouldn't have been much company. Hopefully over Christmas we will be able to see her!
Claire fell asleep on the ride home with applesauce in her mouth. She was exhausted! We were too. I am so glad we got out of there early and were home after lunch instead of almost dark/supper time.
So although it was like living a nightmare for Claire with her panic attacks and flashbacks, I am thinking the results of the tests are good. So we thank God for that.
We were able to go home and enjoy the 70 degree weather we had yesterday. I will post more about that later. Thank you for all of the prayers for Claire yesterday! We really appreciate it!!
Love,
The Scott Family
PS - you know you are exhausted when.......... you change your daughter's diaper on your bed and she so graciously leaves a streak of poop on your sheet on your side of the bed. And you just scrub it off with a wipe and sleep on it anyway because you just don't have the energy to change the sheets..... hahahahahaha
