Archive for November, 2008

A good visit

Sunday, November 30th, 2008

Isabelle is back on track. She got plum tuckered out from the visit and from the changes with the vent. She handled 4 hours off pressure support really well, but 8 pushed her over the edge. As a result, she went into distress, she got a fever and she started having pain. It took a few hours and some pain meds, but she got a good night & day of rest and she’s back on track. Tomorrow she’ll get a new trach tube (normal replacement) and she should get a visit from OT, PT and ST (speech therapy). Isabelle has said a few more things and she even made a lip-smack “kiss” noise a few times. It definitely hurts her throat and she has obvious stiffness in her face. That will get worked out in time and practice. In the meantime, we are dusting off our sign language and Isabelle is getting back into the swing with that. She’s already got down her old signs (”thank you”, “please”, “more”, “all done”, “love you” and “play”).

Overall the visit was really great for her. She got to see her sister and her daddy, she got lots of presents and she got a big dose of extra attention.

Some of the nurses bought her presents this weekend, it was very sweet. Another nurse brought in some movies to watch (she didn’t know we had a library in our cabinet in the room). Dave & Amy visited and brought a cute Princess package. Isabelle has the “Princess Wave” down pat and she waves at EVERYONE. She also loves holding one of her many magic wands and waving it, too. She’s got a new set of jewelry and crowns that she loves wearing. She got some cute new shoes (glass slippers) and new socks she loves wearing and she has a really neat drum she loves playing endlessly. She’ll even fall asleep playing the drum. She fell asleep many times holding my hand and just swinging it. She’s so excited to be extubated and off the drugs. They started the wean on the methidone, so we’ll see how that goes over time.

Isabelle’s reputation is moving throughout the hospital. A respiratory therapist came in over the weekend and said “ahhh, I see now…I was told there was a Princess in the ICU and now I see her”. Isabelle just nodded her head, waved her Princess wave and danced her little legs. It was too cute.

A big thank you to the big Fischbach family for taking care of Amanda and Isabelle. Ellen and Amy took Amanda out for a shopping run on Friday, while Elorah got to play with Dave, his Mom and the boys.

Thanks for all the prayers and well wishes, we really appreciate everything that everyone has done for us to date. We’re working on thank you notes, it may take us a while…

One month, three months

Friday, November 28th, 2008

It has been officially one month that we’ve been here at SLCH (St Louis Children’s Hospital). On 11/25, we hit our 3 month mark for hospitalization for Isabelle post Fontan operation. Imagine yourself lying in bed for 3 months…(ok, don’t do that, but you can see how hard it’s been for Isabelle and how far she’s come and how many battle’s she’s won)

Todays’ update: Isabelle is having a good day. She’s been very active and ‘in charge’. She’s spent the day with Daddy! I’ve entertained every whim. She got dressed up in some new Princess gear, she sat in her chair for over 6 hours, she played with her wooden dress-up dolls, she watched her favorite shows on Noggin and she got a play visit with her sister, which wore her out (so she’s taking a nap now). She just loves waving at the people who walk by outside the room and she waves her Sleeping Beauty wand endlessly, too. It’s so cute. When I asked her if she was a “Princess” she just smiled and nodded several times. She knows it. I told the nurse that Isabelle wasn’t conditioned to be a Princess, she was born one! :D

Her trach is still healing and it’s painful for Isabelle. Isabelle has said two things since getting it. First she said “Mommy” the day she got it which melted Mommy’s heart, then she said “Thank You” last night while watching Backyardigans. I think she just heard it on TV and then said it. You could barely hear her voice, but she definitely tried. It’s a good sign that talking is just around the corner. I requested a visit from Speech Therapy, but the order got in too late so we didn’t get a visit. I want to get Isabelle evaluated so they can come up with a plan to get her talking again. PT stopped by and we had a good visit. OT stopped by, but because they were new to Isabelle, it was not a productive visit (imho).

The plan is to get Isabelle on on the floor, crawling or try some walking next week. Also, after the trach heals, we can try some sips. Isabelle was watching TV last night and a character on a show said “I am going to get a drink of water” and Isabelle pointed to her mouth. I said (stupid me) “Isabelle, you want a drink?” She nodded yes and even cried. I think she really wants to get a drink, but she’s going to need some retraining on it. I know she can do it, but it’s not fully coordinated, yet.

So, she’s got some homework, but the good news is that she’s progressing. Here’s a recap, in the past month she has: 1) had her pacemaker turned “off” into passive mode, 2) had her chest tubes taken out, 3) had her tummy drain taken out, 4) had her IV’s removed, except her one line her leg, 5) been taken off a lot of meds, 6) passed through the woods on withdrawl, 7) not had any fevers in 2 weeks, 8) gotten her arrhythmias under control, 9) been sitting up in a chair for many hours a day, 10) been moving her arms, legs, head and shoulders with strength, 11) been extubated and given a trach, 12) been taken off her sedatives and 13) cheered up 100%!!!

It’s amazing progress and time well spent while waiting for a transplant donor that matches. For those of you praying for specific things, please pray for: no infections, continued strength and progress, a perfect donor match (i.e. a 6-of-6 HLA ‘protein’ match) and for good health and spirits for her Mommy who is taking care of her full time through this journey.

Warm regards, Chris, Amanda, Elorah and Princess Isabelle

Web site fixes and Silent Auction

Friday, November 28th, 2008

I have received a lot of suggestions about the website, please keep them coming. I will try to make changes that best suit our goal and intentions. I am always open to suggestions!

I’ve made the fixes that some of you have found (broken links, type-o’s, etc). I am usually in a hurry to make updates and I don’t have a fancy development environment or testing team so if you find something wrong, please send a note to contact@heartofaprincess.net. I really appreciate your patience with all the changes we’ve made in the past 2 weeks!

The Silent Auction is looking great. If you have something you want to add, PLEASE ADD IT ASAP. Send a note to donate@heartofaprincess.net and we’ll get it up there asap. I love some of the items and I hate to say but I’d bid on several if I could! LOL! I love the Chevy Chase poster and the hand made items! There are some very talented people amongst the donator group. We love the quilts!

Thanks so much for all your support! Regards, Chris (Isabelle’s jungle-gym, play-bot, all-in-one)

Happy Thanksgiving

Thursday, November 27th, 2008

Happy Thanksgiving! We have a lot to be thankful for: prayers, well wishes, kind words, generous gifts of every kind, babysitting and having so many shoulders to lean on. We are thankful that Isabelle is still with us, getting stronger and is making great progress while she waits for a donor. We’re thankful that Amanda was able to take a leave of abscence and that Elorah has a great Daycare at KU she can go to. We are thankful for both our sets of co-workers who have done great things for us. We are thankful for our friends and family who have supported us, given us gifts and donations to help with the financial burden. We are thankful the price of gas has gone down so that the frequent drives to St Louis are cheaper. (trying to be humorous there)

We are thankful that we live in a day and age where children like Isabelle can be born, raised and even given donor organs in a time of need…then go on to live long, happy lives.

We are thankful for the simple things, too, like having such wonderful children, a house to call home, food when we need it and help from our family and friends when we’re down.

Again, thank you for all that you’ve done for us. You’ve made this journey more bearable and you’ve helped Amanda, Elorah, Isabelle and I keep more of our sanity through all this. The Angels will sing and dance the day that Isabelle is able to sing, dance and go home.

Thank you and bless you, warm regards, Chris, Amanda, Isabelle and Elorah

Looking good!

Wednesday, November 26th, 2008

Isabelle looks really good and her overall health is good (all things considered). Her color looks good and she looks really good without the tube in her mouth. The trach will take some time to heal, but it has already done a lot for Isabelle. They also removed the art line in her left arm, so now she’s moving both arms and legs. Her PT is going great and she’s doing the exercises on her own. She was awake and active today from 9am until about 9pm! Her arrhythmias are being closely tracked and she’s still receiving a medication to control them.

She loved seeing her Dad (she lit up). She was so excited to get some presents and she loved playing with a drum that Music Therapy brought by. She even liked playing the drumstick on Dad’s head, too.

No update on the donor status. In the meantime, we are moving forward with OT/PT work full steam.

The Silent Auction goes active tomorrow morning so prepare your bidding! The URL for the Silent Auction is: www.valastrohome.com/hearts

Good day!

Tuesday, November 25th, 2008

Isabelle is VERY happy. She gave a “thumbs up” after she was taken back to her room for recovery. The trach is in place and the breathing tube in her mouth is GONE. Isabelle was “moving and shaking”, wanting hugs and even almost cracked a smile. We are certain that the smiles will continue to come more and more. She’s already looking much happier!

We’re going to start planning for more OT/PT and now some speech therapy. Isabelle has the energy and the interest so we just need to cut her loose now!

Meanwhile we continue to wait for a donor. One of the kids that was “in front” of Isabelle got a transplant last Friday so we know that our time is closing in. Our journey highlights the absolute importance of organ donation. I am the biggest advocate I know for organ donation and I am one of the only people I know that actually has “Organ Donor” on his drivers license. Please think about becoming an organ donor and please consider organ donation for your loved ones should something happen to them. Give life…

Blog Admin Note: there is now a “Subscribe” link on the right side of this page. Please become a subscriber! This will become the long term care page for Isabelle so please register.

Getting a trach

Monday, November 24th, 2008

We’ve talked with the Dr’s and nurses and we’ve come to the conclusion that getting a trach is the best situation for Isabelle. I could list all the benefits, but only two problems: risk of infection and a new scar. A new scar is nothing for our Warrior Princess, but the risk for infection is serious business. Any time you have a puncture in the skin you have a risk for infection. The benefits list in the double digits though. Some are: talking, walking, moving around the floor, sitting up, interacting, more strength, happiness and so on.

Thanks for your kind thoughts and prayers and continued support. Please pray for a successful procedure tomorrow morning (830am). We hope that this will uplift Isabelle’s spirits and give her a new energy!

Doing really good and talk of a trach

Monday, November 24th, 2008

Isabelle did really good yesterday and she’s off to a good start today. She’s had more energy and strength than in 10 weeks prior. She was wanting lots of attention, hugs and kisses. She played with her Mommy and she watched some movies too.

The Dr’s talked to us today about the vent and we have decided to get Isabelle a tracheal breathing tube. Weaning her off the current vent is taking a long time and it has it’s challenges. Giving her a trach will allow her to sit up, sit in a wheelchair, try to talk, try to walk and it would even allow her to move to a step-down unit while she waits for a donor. The benefits seem to vastly outweigh the risks. Since our wait for a donor could be from 1 week or 6 weeks, we cannot imagine having Isabelle be stuck, lying in bed with a breathing tube in her. With a trach she’ll actually be able to have a life while she waits, gain strength, do activities, and enjoy company.

We’ll let you know when they do the procedure, but it could be this afternoon or early tomorrow. Please be thinking/praying for her.

More strength and more slideshows

Saturday, November 22nd, 2008

Isabelle had a good day and she’s making progress on the ventilator wean. She sat in the chair and her strength and endurance are increasing each day. We would be so happy if we could get a special gift for Thanksgiving and be able to hear her voice again. Isabelle got a special visitor today, too. A former teacher from her daycare was in town and brought by a neat “wooden doll” toy that allows you to dress it with little magnetic clothes. Isabelle just loves and she loved the visit from Kelly, too.

I put up two new slideshows on the photos page. I am sure you’ll enjoy them. You can really see how much Isabelle has already been through, how far she’s come and I haven’t covered this year.

We know times are tough and the economy is not doing well. We really appreciate the donations we’ve received. We know that you’ve had to dig deep to help us out and really appreciate your generosity and we cannot thank you enough. Thank you for all the thoughts and prayers, your support has been amazing.

Talk of extubation

Saturday, November 22nd, 2008

Isabelle had a good night and she’s getting more strength each day. There was a transplant in her category yesterday so that leads us to believe that we are one step closer to receiving a donor heart. Her main cardiologist came in last night and said he was very pleased with Isabelle’s progress. He thinks the arrythmias may have been the source of all problems. Now that they are under control, we can talk about healing and quality of life. There is serious talk about weaning her off the ventilator again. If we can get her extubated, Isabelle’s spirits would soar! It won’t change her transplant status, but it will give her some quality of life back and allow her to talk. One option would be to put in a trach breathing tube if it was needed. The other option would be just to give her some oxygen through her nose. If we can get her extubated, then we could even talk about moving her to a special unit that is not as intensive. This would give her more privacy and time to relax. It sends us a huge message that the Drs think Isabelle’s improved enough to actually be able to leave the ICU while she waits for a heart!! Imagine that! The more time she waits for a heart, the stronger she’ll get and the better her chance for a successful surgery.

If you missed the story, you can actually watch the video via the fox website. Go to: http://www.myfoxkc.com/myfox/pages/News/Detail?contentId=7903031&version=1&locale=EN-US&layoutCode=TSTY&pageId=3.5.1. On the little sidebar window in the middle of the story, you can click on the video (it’s a very small picture of Isabelle).

Thanks for tuning in!