Sunday, September 16, 2007

The Full Dish

We came home yesterday. Here's the scoop from our hospital stay. After hours of waiting, the cardiologist who assisted in Clare's cath finally made it to our room. (Clare's primary interventional cardiologist NEVER updates us - brilliant man, poor people skills?) And, of course, it was during the ten minutes that Shawn was eight floors below grabbing dinner. The cardiologist apologized that no one spoke with us sooner, but she was scrubbed in on another case and thought that one of the other doctors would have talked to us. Unfortunately not.

There is good news and "not so good news." The good news is that four of Clare's proximal left pulmonary vessels were successfully dilated. Three of Clare's proximal right pulmonary vessels were successfully dilated. Clare's echo four weeks ago measured right-sided pressures that were 200% those of her left side (a normal heart should only be 25%). The cath showed that the right pressures were actually only 100% of the left pressures. Not stellar news, but pressures that are equal is MUCH better than pressures that are double. Post-cath, the pressures measured 70%. It's a lot of numbers and very technical heart lingo to explain it all, but that's basically the gist of it. Clare's entire aorta looked fabulous.

The "not so good news" is that the right pulmonary side (which was what they worked on in the June cath) was much more narrowed than expected, given that her cath was only 3 1/2 months ago. Therefore, the doctors had to spend time re-dilating those vessels and did not have time to work on any of Clare's distal pulmonary vessels on either side. Also, they were unable to have a look at Clare's renal arteries since she was already maxed out on the amount of dye her body can tolerate once they were done with the dilations. So Clare is returning to the cath lab in the near future. We do not know exactly when (we will find out when we see her NH cardiologist in a couple weeks), but the Boston cardiologist predicted 3-9 months from now.

Clare went into the cath with low blood pressure and dehydration, so she did have some "blips" in there. (Such a nice, innocuous term for something that, in reality, is more serious.) I kind of feel responsible for the dehydration bit, given that we were instructed to have Clare drink 2-4 ounces of water two hours prior to her cath to prevent that very thing. So I diligently woke Clare up at 4:45am and had her snuggle in bed with me to drink some water. However, Clare was very sleepy, did not want to drink water, and was more interested in falling back asleep on me. I was able to get her to take a couple sips, but once 5:00am hit, I had to cut her off from any more water, as that is when her NPO started (no more food or drink). I do understand (as does any parent) that I cannot force Clare to drink. I just wish I had been more successful in doing so. Regardless, this dehydration and low blood pressure resulted in Clare receiving dopamine and a blood transfusion. She did have some funny rhythms in the cath (again, I love the word "funny" that the doctors use at the hospital to describe something much more serious), most likely due to the fact that they are snaking all sorts of tiny objects through her blood vessels!

All this added up to a somewhat successful cath. Clare's fever finally broke around 2am the night after her cath. Shawn said it was a miserable night for everyone. Clare had some funny rhythms again overnight. This time, most likely due to the high fever. She did have some vomiting post-cath as well, but seemed a little more like herself on Saturday with her heart doing what it is supposed to be doing, so she was discharged.

Shawn and Clare are at the pediatrician's right now because Clare is still vomiting, not eating, and barely drinking. There is worry of dehydration, especially because Clare needs to stay hydrated so her body can filter out the dye (or it can harm her kidneys). After more throwing up this morning and no eating or drinking, we called the hospital. Rather than driving down to Boston to wait in their emergency room, we chose to see the pediatrician here. If Clare is dehydrated, they can send her over to the local ER for IV fluids. Children's Hospital also wants the pediatrician to run a couple EKG's to make sure Clare's heart is not acting up again. So I am waiting to hear back from Shawn (or see them walk in the door) on what's going on.

13 comments:

Kerry said...

Please keep us posted on what's going on... so much thinking of you guys right now and that little Elmo hugger you have there. We prayed for her this morning at church and I know she has so many good vibes coming from all across the globe.

ALSO you know there was no way of getting her to drink more water, so don't even go there. You are an amazing mother and you can yell at her when she's 16 about how much trouble she gave you!

Love you all---- call if you need me I am home all day

Nicole said...

Hi Teresa,

Wanted to let you know that Clare is very much in our thoughts and prayers. We were out of town last week and as soon as I got home I checked your blog to find out how the little peanut was doing. Hopefully, things will continue to get better. Take care and keep us updated! Nicole

Every minute counts.... said...

OMG! I am sorry that things went they way they did. You and I both know not to expect things to go along with no bumps...but it is a great thought isn't it?
I know all too well the dehydration thing...actually ended us in the urgent care today...missed out on admit for now but I'm going to push fluids big time to avoid it( and cut her diuretic in half which will help).You really can only get them to drink so much...it is really a hard thing to do! Keep us updated when you can. We are thinking about you and praying for all of you!

Noel

Julie said...

I hope and pray everything is okay. I am so glad her Aorta is good. I wonder did they think she would outgrow the pulmonary stenosis? I ask this because Noah also has this and they said he will probably outgrow it.

Tammy Kitt said...

Teresa,

I just read your posts on Clare and my prayers are with Clare and your family. I'll keep checking to see how Clare is doing. It's a strange feeling when we see all the obstacles our children with WS go thru and it just feels like each child is like our own. I will pray for a speedy recovery for Clare.
Take Care
Tammy

camille said...

Thanks so much for keeping us posted. I hope you get a good nights sleep and that Clare is eating and drinking more as she is feeling better.

Amy said...

Well mom, you are certainly a seasoned pro at this, and I am sorry for that): Honestly, I don't know what to say, I am not happy to hear the bad news, and Clare isn't 100% so why don't I just say a big pray for a return to "normal" at your household asap. Hows that?
And I love you guys and am happy that Clare made it through yet another surgery! Ask the docs if instead of water you can give her some other type of clear liqued like lemonade or sprite? Although not ideal, better than being dehydrated.
Amy

Heather said...

Thanks for the update, I am hoping for a speedy recovery. I am keeping Clare and your family in my prayers.

Kim, Grandma to Ava,ws said...

You are so considerate to post when you must be so tired and frazzled. Thank you for that. I continue to pray for Clare'S health and that your family can rest easy for once.

Love, Kim

Tara said...

Wow, you all have been put through the ringer. We are continuing to keep you in our thoughts and prayers. Thank you so much for the update.

Anonymous said...

We, too, appreciate your efforts to keep "us" connected to all of you. Clare (as well as everyone there) will always be in our every prayer. Hopefully today (Monday) is a little better for all of you. Give Jamie a big hug from us, as well as Simon - and of course Miss Clare! Love to all, Aunt Joan

Aspen said...

Thanks for the update. I have been praying for your entire family all weekend long. Keep your chin up and you will once again make it through this. You are an amazing woman and I admire your strength. LOVE LOVE LOVE!

Lisa R said...

glad it went well and you got to see Kerry and Brady...Sorry Clare is sick and has to go back so quickly I hope she is feeling better very soon....Love Ya