Thursday, June 07, 2007

Random Thoughts

Now that Clare's cath is behind us, I have all these random thoughts floating around in my head that are just begging to get out. So pardon the lack of continuity in this post.

We had an awesome anesthesiologist during this cath. Not that all of Clare's anesthesiologists haven't been great, but this one really stands out. And I cannot even remember his name. It doesn't really matter because he only has two more months of his fellowship at Children's, then he is practicing at York Hospital. He stayed with us after Clare was given her cocktail to drink but before she was mellow enough to be brought back into the cath lab, and we chatted. Mostly about southern Maine (since Shawn is from southern Maine - this doctor did his residency at Maine Med in Portland, and is heading back to Maine soon), but also about WS. It is always refreshing to meet someone who not only has heard of Williams syndrome, but is very familiar with it. Especially when this doctor will be taking care of your daughter. Because of the nature of the blood vessels and heart disease when it comes to Williams syndrome, anesthesia in any form is very risky for these children. Although you do not like to hear it, I do appreciate it when the doctor is straight forward with us, as this one was. He told us bottom line is that Clare has always done well with the anesthesia process, but it is always a huge risk for her and that will never change, especially since blood vessels are being occluded during the cath. It's hard to hear, but at least we know that the doctor is aware of the risks and (hopefully) knows what to do to avoid those risks. I would rather have that attitude than a doctor who says "Oh, she'll be fine. We do this all the time." On a lighter side, the anesthesiologist told us, that in his experience, in a couple years, Clare may even enjoy her hospital stays. His experiences with kids with WS are that they are not afraid of the hospital and the procedures they have to undergo. They are chatty, social kids with a great personality. He has even been asked to the prom by one. I hope someday Clare will have this attitude, too. She was so aware of everything that was going on that, in many ways, this was the hardest procedure yet. We know she has many more hospital stays ahead of her, so it would be great if every one wasn't traumatic.

The cocktail Clare was given to drink was a mix of versed and ketamine. As I said earlier, ketamine is a popular street drug (known as Special K) since it is a hallucinogen. It works quite well on mellowing people out, to say the least. Clare was given it prior to her cath to relax her so she would not freak out when the doctors took her away and started her under general anesthesia. However, ketamine can cause some scary hallucinations (people have reported "seeing" sounds, that kind of thing), and takers can have flashback nightmares weeks after the drug. That is why versed was added to the ketamine. The versed makes Clare forget anything she hallucinated, so she won't have flashbacks. All very weird to be discussing this quite normally about your two-year old. Clare was pretty funny after the cocktail started to work. She stared intently at the red light on her toe from the pulse-oximeter. She would slowly wave the foot back and forth in front of her eyes. She had been watching Sesame Street before she had her drink - I can only imagine what Cookie Monster and Elmo sounded like to her after! Clare was definitely mellow and did not even care that strangers carried her away from Mommy and Daddy. Which is a good thing, I guess.

When we met with Clare's hospital cardiologist after the cath, he told us Clare would need another cath in 6-12 months. In the past this cardiologist is usually more optimistic about the length of time between caths than Clare's home cardiologist. So, on one hand, I am skeptical whether Clare will go another year between caths. On the other hand, I am hopeful that she will since she made it 15 months between cath 4 and cath 5. (We have the full follow-up with Clare's home cardiologist next week - echo, EKG, chest x-ray - so I am curious to hear her prognosis as well.) The Boston doctor also said that Clare is still on the severe end with her heart disease, though, which was another hard thing to hear. We've known since almost the beginning that in the scope of the stenoses found in Williams syndrome, Clare's was severe. But I can never let go of that hope that Clare will outgrow this. I keep reminding myself that she is only 2 years old, so she is still growing. At the same time, early adulthood seems so far away that I dread the idea of cath after cath. I know Clare will get there someday, I just fear there is a long road ahead of her.

Thank you again to all who generously donated (on- and off-line) to the Easter Seals Walk With Me in honor of Clare. We raised over $1,700! We are getting ready to walk tonight with Shawn's family. Clare got her new AFO sneakers yesterday. They are adorable and big clunkers! I don't know how she can walk with all that weight on her legs. She will see Kelly, her PT, next week to start in them. Another thank you to all who donated to the Williams Syndrome Association Valentine Fund in honor of Clare - we appreciate the support of all our family and friends.

And, finally, Clare's little brother had his first photos done, and they are gorgeous. (As all our children's photos are!) So enjoy our Simon photos... we are off to do our walk tonight, then are taking off for my sister's wedding.


nichole said...

the pictures of you and shawn with simon are just lovely. have fun with the walk and tell Christina I said congrats!

Every minute counts.... said...

First- the pics of Simon are great. I love black and whites.
Next- I too have run across only a couple of drs who take my concerns for anesthesia seriously.Now all of the drs at our hospital take WS kids a little more seriously because of 2 kids who had major complications. They finally are very watchful, it's just horrible that it took some kids having reactions to get them to notice.
I cry through your posts because I can relate on so many levels to what you write.I just wish others didn't have to have the fears that I have, it is a horrible weight to carry and try really hard not to show.
I am participating in the AHA heart walk this Sat..which of course puts all of my thoughts and fears in the forefront of my mind.
Abi is better about going to the dr as long as she knows who she is seeing and if there are "ouchies" involved. She loves the hospital and EVERYONE remembers her. The security guards at the front desk, the admissions woman,the medical records woman, many radiology techs,nurses,drs, surgeons, you would be amazed at the number of people who see her and say "It's Abi!!!" with a huge smile on their faces.For the most part the hospital is her social time and she gets their undivided attention which she thrives on!
Sorry so long...good luck at the Easter Seals walk!! And the wedding.

Kerry said...

What beautiful pics of Simon... so classy and rich. They look fabulous.

I am glad you were at ease with your docs... to know these people understand where you are coming from makes all the difference. Brady didn't have any issues w/anesthesia during his hernia surgery last year, but it is still in the back of my mind anyway.

Have a great time at the wedding and let me know when you want to hoo up!

Aspen said...

Teresa, the pictures are beautiful! Your story of Clare and her street drugs made me laugh. Quite funny! It's a good thing we can laugh at all of this right?

Anonymous said...

Teresa & Shawn - What a beautiful little guy Simon is! Thanks for sharing all 3 kids with us this weekend! Jamie was handsome as ever, Miss Clare adorable in her dress, & Simon was precious! Prayers are sent for a longer interval between caths, and for a miracle - they do happen! Love to all of you, Aunt Joan & Uncle Steve

Lisa R said...

I love the black and white pics...priceless :)