Goodbye Hospital Hello Disney!!! October pre-wish trip report

[Somer]

They were preping Jozlynn for emergency exploritory surgery in her abdomen and because of her heart condition they gave her antibiotics as a precaution. After that she started to stablize and they don't know exactly what it was, but they think it might have been some sort of infection that may have been caused by rotavisus. She'll probably be here for a few more days for monitoring because of the heart attack scare last week. She looks sooo much better, and her blood work is looking better and her blood pressure too. Yay!!

 

[My2Qtz0205]

That's how I feel about hospital food, too, Jozlynn!

Glad to hear she is getting better. We like her Ariel band-aid.

I am also an October '09 vacationer. We are going 16th-23rd.

 

[5dwarves]

I am glad that she didnt' have to have the surgery and is on the mend. Her expression cracks me up....I doubt there are many people out there who great their hospital tray enthusiastically though.

 

[maroo]

I am so glad she is doing better!!!

Heart attack scare last week?!?!?!

I love your MAW princess thing in your siggie. Where can we get one of those?

 

[tinytreasures]

glad she is on the mend

 

[Khalana]

Hi Somer!
I just found your TR and I have to say I'm so honored to be mentioned.

Your story sure is a tear jerker... I feel your pain.

Jozlynn is such a sweetheart! And tough as nails.

I'm so sorry you had another heart/health scare again but I'm happy she seems to be doing better.

You guys SO deserve this trip, so don't feel bad about recieving money at ALL! Okay?

I look forward to reading all about your amazing adventures!!!!

 

[NurseW2Kiddies]

Beautiful!!!!!!!!!!!! You have georgeous girls!!!! It sucks being in the hospital!! You just wanna go HOME!!!

 

[cajunfan]

Just reading your trip report...hope everyone is better.

Lynn

 

[Somer]

Hi everyone,
Thank you all for following our thread. We still have not gotten dates for our trip because they did not want to approve her for traveling until after her cardiologist appointment.

Well, we went yesterday to see him and things didn't look quite as good as we expected.
As for Jozlynn's progress, there has unfortunately been no growth at all in the right ventricle. Her pulmonary and tricuspid valves have become more leaky. The good news is that the pressure in the right ventricle is staying in the safe range. Although the valves are looking slightly worse, they are still getting enough blood flow through them at this time. As Dr. King put it, "she is somewhat stable." Therefore, they are not going to do any valve replacements right now.
On Monday however, on June 15, 2009, she will having another heart surgery. There is currently a lot of shunting between the left and right chambers. They are worried that if she gets any blood clots, because of her valves, the clots would travel through her heart and be shunted through the hole going directly into the brain. That would be a very bad thing. For that reason she is going to have that hole closed. The down side to closing the hole is that it will put more strain on her liver, which is already enlarged. It's like a catch 22; I guess the risk of possible brain damage outweighs the risk of possible liver failure.

Overall, the appointment went OK. He was obviously disappointed at the lack of progress, but mommy and daddy think that no progress is definitely better than a giant step backwards. So it looks like our plans are still on for Disney World in October, and we will get the dates after surgery as soon as she is cleared for traveling.

I can't wait to start doing some major planning for this trip, I'm just feeling a little overwhelmed right now. I will post some good news soon though, I promise!

 

[Matt1026]

Please know that I am praying for your beautiful princess and your family!!!! I can not wait to see your pictures of her enjoying WDW come October.

 

[keetmommy]

I hope your surgery goes and well and she recovers quickly for your trip in October

 

[Eeyores Butterfly]

I just found your pre trip report through the Wish Trippers thread. Your daughers are absolutely adorable! I'm so sorry that you are going through all this right now. Hopefully Jozzlyn's surgery will be fine and she'll come out with flying colors. Keeping my fingers crossed.

 

[Eeyores Butterfly]

I'm sure you're very busy right now, but when you get a chance, please let us know how the surgery went. Jozlynn is in our thoughts and prayers.

 

[maroo]

Yes...please let us know how she is doing! And how are you?! I hope you are holding up and getting a little rest.

Hang in there! We are praying for you guys.

 

[Somer]

Thank you all for the prayers. Jozlynn's surgery went good. It took a lot longer than they expected because they found more to fix. They realized that her right pulmonary artery was almost completely closed! They had fixed it when she was a baby but it closed again, so they were able to put a stent in there to keep it open. They also put an ASD devise in to close the hole.

She has had a rough few days, but her SATs (oxygen level in her blood) are very good now. The Doctors think that she will have even more energy now and that she may have a full year(maybe more) before they have to re-replace her pulmonary and tricuspid valves, if the heart has grown by then.

I am doing good. Although I hate to see my baby girl suffer, I feel a little more relieved now especially because she's starting to feel a little better.

It might be a little while still before we get the dates. MAW said that they will end up picking some dates but they won't actually buy the plane tickets until we get the doctor's to give the ok to travel. They are waiting until after she gets evaluated by some specialist due to some blood work that has not returned to normal since her hospital stay a few months ago. Hopefully they'll get to the bottom of that really soon. October is only 4 months away!!

Thank you all again for all of your concern, I am really sorry that this thread has turned out to be nothing but medical updates instead of Disney planning. I am getting really anxious to get focused on Disney

 

[maroo]

Yeah! An update! I have to admit, I was getting a little worried...


I am so glad the surgery went well and I am thankful they did it when they did, because it sounds like they certainly needed to get in there and take a look!

I hope they can get the other medical issue with the labs straight, too!

Please don't worry about not talking Disney yet. The whole reason for your trip is the medical stuff and a lot of us just live life on our pre-trip reports anyway...even birthday parties, graduations, summer pics, etc...so this definitely relates!

I am glad you updated us and feel free to continue to update us!

 

[Eeyores Butterfly]

I'm glad to hear that everything seemed to go well. Hopefully she will recover quickly so you can go to WDW soon!

 

[Khalana]

I'm so sorry Jozlynn had to have another surgery. But it seems like she is recovering well. I hope you'll be able to get into full planning mode soon and have fun anticipating Disney. It really is something that you will remember for the rest of your lives...

 

[Somer]

Hi everyone,
First of all I have to thank Eeyore's Butterfly who sent a very cute get well card signed by a bunch of Disney characters. Jozlynn reads the card daily!

A little medical update: Jozlynn is doing better than we ever expected!! I didn't even realize how badly she needed the surgery until now. She has more energy than ever!!

We finally got a date!! October 2nd-8th
American airlines is doing some sort of promotion/media thingy for MAW and Jozlynn is going to be the special guest. It sounds like she'll get some special treatment on the airplane and then a party once we get to GKTW.

The wish granters have been so wonderful, they've sent a few gifts. They also have come by a few times to visit, even dressed like clowns!

I'll try to update more soon, I've just been so busy with college...only 3 weeks left until I get a little break!!

 

[Matt1026]

I am so glad she is going so well It sounds like your trip is already off to a great start. How exciting about your plane trip.

Best wishes on your last 3 weeks!