A Short but Not Sweet Trip Review *12-1 Pre-Trip Report Link

[jennyjinx3]

Oh my. What a lot of emotions to go through, and your brave girl. I hope the news is a bit more positive from the next Dr.

 

[Mommy2Corinne]

Wow! I just read your whole report while I should be getting ready for work, lol. What a roller coaster! I am SO happy your DD is doing well. Best of luck and prayers sent your way. I hope your next trip to the World is filled with tons and tons of pixie dust. ((((HUGS))))

 

[geckodani]

Oh my goodness. I can not even imagine the roller coaster of emotions you were all going through! I am glad to hear that the outcome, while unpleasant, was not as bad as it could have been!

 

[mom2cgj]

Reading that last report was such a tear jerker for me! I totally understand what you mean about surgeons! My baby was in an accident when he was a real baby - 11 months. He was badly burned on top of his head. When we were in the burn unit, the nurses were always so encouraging and saying how fast he was recovering, etc, and then you'd go see the surgeon in charge of the case and they'd be like "well, it's better, but we'll have to see if he needs surgery." I even complained to a nurse once, and (after shutting the door) said "I know he doesn't have much of a bedside manner, but if I had a child in the burn unit, I'd want him for my surgeon." Kind of made it better! I also know what you mean about the versed! Jesse had to have it whenever we went in for a treatment, and they knew it had kicked in when he became "drunk Jesse". He'd start randomly giggling and just being completely goofy!! (Just so you know, he's perfectly fine now - and never needed that surgery!)

So glad to hear that your princess is doing better. It is so hard to have a sick little one. Your family and friends sound absolutely fantastic!!

 

[summerw]

I'm so glad she's doing well. Your report kept me up late last night because I just couldn't stop reading until I read she was ok. My brother and his son actually had the same things in their necks. Small, removed by surgery, with no recurrence. No complications.

I totally agree with you about surgeons. They are amazingly talented but uber focused on their jobs and not always in tune with the emotional side, which is I guess ultimately what we truly need from them, but that's hard to feel when they're giving you news in the waiting room. My mom's heart surgeon has zero social skills, but he saved her life, so he's one of my favorite people.

Although I too would totally mourn for my lost vacation, it does seem like the cysts were happy to go on lurking in her bowls and maybe they would have lurked much longer and grew even more if not for the excitement/ stress of travel, different diet, etc. So maybe your Disney trip helped keep your little girl safe by making the problem apparent. Maybe that's true or not, but it might help me if in a similar situation. Besides now you have to plan another trip to make up for that one.

I'm so glad she's ok and your kiddos are adorable. It sounds like you had a great support system through it all and I think all of us now want to go to work for your husband's company. So happy for you.

 

[jwgm2012]

I just found your report. I admire your strength because many would just crumble up and cry... I think someday the hugeness of this will "come out" but right now, it's about getting your baby back up and running... kinda like the coach who is just getting through a really, really bad football game... just do what ya gotta do... deal with the rest later. You're the best medicine your baby can have right now - seeing how you cope is what's helping her cope.

Blessings to you and your family and next birthday will be the one when you say "remember last birthday?"

Can't wait to read the rest...

 

[DopeyDonald]

Oh my. What a lot of emotions to go through, and your brave girl. I hope the news is a bit more positive from the next Dr.

Wow! I just read your whole report while I should be getting ready for work, lol. What a roller coaster! I am SO happy your DD is doing well. Best of luck and prayers sent your way. I hope your next trip to the World is filled with tons and tons of pixie dust. ((((HUGS))))

Oh my goodness. I can not even imagine the roller coaster of emotions you were all going through! I am glad to hear that the outcome, while unpleasant, was not as bad as it could have been!

Roller Coaster is the best way to describe how we have been feeling since Disney. The ups and downs are really unbelievable.

"She doesn't have cancer. Yes, she does. No, it's not cancer, but it's still fairly serious. But not urgent. The surgery went amazing. No, it didn't. Your daughter will be fine." Ugh I feel a little green.....

Thanks again for reading and all of the well wishes. She really is amazing in her recovery thus far

 

[DopeyDonald]

Reading that last report was such a tear jerker for me! I totally understand what you mean about surgeons! My baby was in an accident when he was a real baby - 11 months. He was badly burned on top of his head. When we were in the burn unit, the nurses were always so encouraging and saying how fast he was recovering, etc, and then you'd go see the surgeon in charge of the case and they'd be like "well, it's better, but we'll have to see if he needs surgery." I even complained to a nurse once, and (after shutting the door) said "I know he doesn't have much of a bedside manner, but if I had a child in the burn unit, I'd want him for my surgeon." Kind of made it better! I also know what you mean about the versed! Jesse had to have it whenever we went in for a treatment, and they knew it had kicked in when he became "drunk Jesse". He'd start randomly giggling and just being completely goofy!! (Just so you know, he's perfectly fine now - and never needed that surgery!)

So glad to hear that your princess is doing better. It is so hard to have a sick little one. Your family and friends sound absolutely fantastic!!

Glad to hear everything worked out with your "baby" And the part I highlighted above is EXACTLY what the nurses told me! And I agree, he was absolutely amazing - the pics he took during the surgery boggle my mind. Without going into too much medical detail, it really was quite extensive what they had to do. My mother, who is a cardiac nurse, said something interesting too. She looked at Cassie's incision and could instantly tell that he was an amazing surgeon - her incision looks like no more than a thin scratch down her belly. He took so much time and care sewing her up - She says you can tell the good ones, by the time and care they take with closing.

Also, he took the time to call me personally today, to see how she was doing and talk about her follow-up!

 

[DopeyDonald]

I'm so glad she's doing well. Your report kept me up late last night because I just couldn't stop reading until I read she was ok. My brother and his son actually had the same things in their necks. Small, removed by surgery, with no recurrence. No complications.

I totally agree with you about surgeons. They are amazingly talented but uber focused on their jobs and not always in tune with the emotional side, which is I guess ultimately what we truly need from them, but that's hard to feel when they're giving you news in the waiting room. My mom's heart surgeon has zero social skills, but he saved her life, so he's one of my favorite people.

Although I too would totally mourn for my lost vacation, it does seem like the cysts were happy to go on lurking in her bowls and maybe they would have lurked much longer and grew even more if not for the excitement/ stress of travel, different diet, etc. So maybe your Disney trip helped keep your little girl safe by making the problem apparent. Maybe that's true or not, but it might help me if in a similar situation. Besides now you have to plan another trip to make up for that one.

I'm so glad she's ok and your kiddos are adorable. It sounds like you had a great support system through it all and I think all of us now want to go to work for your husband's company. So happy for you.

Yup, Lymphangioma is usually in the neck - only about 2% of them are located elsewhere - see how lucky we are! lol The ones in the neck are usually found much quicker and are usually able to be removed completely. Interesting that they both had it - was there a genetic link at all? That is the kind of questions I have, but haven't had a chance to talk with the doctors yet.

I also absolutely agree with looking at thanking the trip for finding this. Whether it was a bug, or inflammation from the change in diet, traveling etc. I am SO THANKFUL we found it now, before it became an urgent situation. Everything worked out so perfectly.

Thanks for all the happy thoughts and yes, I agree, my husband's company is AWESOME *and* they have really good insurance, which I am finding out is a very good thing!!

 

[DopeyDonald]

I just found your report. I admire your strength because many would just crumble up and cry... I think someday the hugeness of this will "come out" but right now, it's about getting your baby back up and running... kinda like the coach who is just getting through a really, really bad football game... just do what ya gotta do... deal with the rest later. You're the best medicine your baby can have right now - seeing how you cope is what's helping her cope.

Blessings to you and your family and next birthday will be the one when you say "remember last birthday?"

Can't wait to read the rest...

Thanks, but I really do feel that each and every one of you would find the strength too. I really wasn't given it until the moment I needed it. And I am starting to get weary now that we are home, but she is doing so well that it is alright. Some of the "hugeness" of it leaked out the last day in the hospital when her and I had a huge cryfest together - lol, but you are right, I dont' think the magnitude of what happens even seems real to me yet.

Oh and poor kid - she's already been the kid in those pics....On our 3rd trip we looked BACK at pics of her from our 2nd trip with her huge red femur cast on.... Just how many times do we have to look back and say "remember" lol
Here's a few pics of that just because she was so cute in her cast....

Here is my main man signing her cast - front and center - #1

And finally - COOLEST. CAST. EVER.

By the end of the trip she had Pocahontas, Snow White, Jasmine, Lilo and Stitch, Donald, Mickey, Goofy, Chip and Dale, Flik, Rafiki and Jiminy Cricket all sign her cast. I still have it.....

 

[KapBoy77]

Just had to explain to my wife that my allergies are acting up again. God bless your little girl. (That pic of her wearing the cap and gloves did me in btw lol)

 

[DopeyDonald]

Just had to explain to my wife that my allergies are acting up again. God bless your little girl. (That pic of her wearing the cap and gloves did me in btw lol)

I didn't mean to make all of you weepy -especially guys - Seriously though thanks for your prayers....

 

[DopeyDonald]

Got the Beverly Video loaded up!
http://s1311.photobucket.com/user/DopeyDonald08/media/DrinkingtheBeverly_zps8cf0d30f.mp4.html

 

[DopeyDonald]

It was only about 15 more minutes and they came out to get us, saying that she was waking up in recovery. Once we got back to the recovery room, it was only about 5 mins and we were ready to head up to the floor she would be on for the remainder of her stay.

She was doing OK, as long as I was standing right by her holding her hand. She was flushed very red and that alarmed me at first thinking she had a fever. The nurses quickly explained that it was flushing from a side effect from one of the meds. Here is a pic of her in the recovery room (the quality of the next few pics isn't as good as they were taken with my Ipod....)

By this time it was around supper time. The rest of the family (DH, Nana, Papa and Big Kids) went downstairs to order a pizza. This was just fine with me as the room was small and they were driving me nuts. Lol. They were fussing over her and talking to her and wanting to hold her hands, feet etc. Bless them, but they were driving HER nuts too. Her and I both just needed a minute. or 5. lol

She did really well after that. Everyone came back up to say goodnight and decided to head over to the hotel to swim and relax. The hotel was only about a block away, so everyone left and her and I settled in.

She had a good night, but the nurse informed me around midnight that if she hadn't peed by 4am then they would have to cath her. I informed the nurse that that would probably be like cathing a cat. She had had a catheter in during surgery, but had peed it out while waking up. Finally right at the 4am mark, I convinced her to use the bedpan. They had originally put a diaper on her, but she was having NONE of that. The bedpan was bad enough in her mind.

Getting that out of the way felt very good. The rest of the morning went well - I was having to sneak food because she was already very hungry and it would be some time yet before she could eat. Everyone came up for a short visit around 11am - I had hopes of sneaking out to shower at the motel (my DH had gotten a check-out extension) I finally got her into a sound sleep and snuck out of the room. I got all the way to the ramp, into the car and was driving out when I got the call. She had woken up and was NOT happy that I was not there. DH tells me to keep going, they would handle it. (THEN WHY DID YOU CALL ME AND MAKE ME WORRY??!!) I got out of the ramp and down the block, when my phone rang again - "you'd better get back here -she pulled out her IV" *sigh

So I rushed back - literally running. I got into the room and her heart rate was 155...about 5 seconds after getting in the room and talking to her and holding her hand it was 88. *sigh* Right then and there, I knew it was going to be a stinky week for me.... lol Oh well, that's what mama's are for. Only problem was I was HUNGRY. Thank goodness for power bars.

After that fiasco, everyone else left. DH was going to run up to his company's office a few suburbs away, and Nana and Papa were going to take the big kids a few blocks to the science museum.

Here is the smiles I was getting after everyone left and she was able to relax...

Around 1:30 my cousin showed up. She brought her a balloon and little jewelry making kit. Cassidy was happy playing with that for a bit, but then got CRANKY. She was HUNGRY (or so we thought). She kept saying over and over - literally without stopping for an hour. I WANT FRENCH FRIES. Not even kidding. I should have counted. lol After a bit she finally fell asleep.

I had a nice visit with my cousin who kept me company until around 4pm when everyone else got back. This woke her up and agitated her. My parents, Annie and Larry were all going to head back to our hometown this evening. Larry needed to get back to work, pick up the dogs and things like that. I kept Wyatt with me all week. He was a lifesaver. We homeschool so this is possible . He was able to get some school work done AND be my slave for the week. He's 11 and a second degree black belt so I feel comfortable with him going down to the cafeteria etc. He would go down and sneak me up food - lol.

We had an old negative pressure isolation room so we had an "outer entryway" that came in super handy -it's where we could step out to eat.

After everyone else left, she was super agitated again. She just kept saying over and over again, I want French fries! I felt SO BAD for her. At this point, they finally said she could have ice chips. Those didn't cut the mustard in her mind though. Then she was told she could have GUM. This made all the difference in the world. She is my gum lover. So this made her VERY happy.

Blowing Bubbles like a boss

After supper time, my aunt and uncle came to visit. They brought her a big Polly Pocket Water park set and some neat other toys. She was having none of it though and spent the time repeating over and over again - you guessed it - I want French Fries.

Well, after an hour of this the nurse tried calming her down with a dose of morphine. She really hadn't had any since the night before since she hadn't complained of pain. Well, the morphine calmed her right down and she was happy as a clam. The nurse and I felt SO BAD. I dont' think she was necessarily hungry, I think her tummy hurt and she didn't or couldn't verbalize that to us. Now we knew what to watch for... After that our night was uneventful and we had a good sleep.

 

[DopeyDonald]

Thursday morning dawned and we were ready for what the day had to bring. Wednesday she had not done anything more than have the bed moved slightly upright.

Here is my FB post from that morning;

"Good night's sleep. Hoping for some big steps today. One being tube out. Two being sit up for longer periods. Three being start on some juice and jello. Last being, and seriously the most important, yet the one that she will kill me for posting about when she's older, we need to pray for passed gas. Nobody said my updates would be lady like lol."

The nurse came in and said we should try and her up to the bathroom instead of the bedpan. I said OK, but Cassie wasn't having any of that. I think she was scared to move and rightfully so. After a bit, Cassidy decided that if she could get out of the hospital gown and into her own clothes she would be a bit more cooperative. I didn't think that they would allow her to do this, but once they heard that is what would motivate her, they were very encouraging.

We set about getting her into her own clothes, and peeing on the big potty. Yay!
Here are my pics from around then...

We have achieved some verticalness

Then what REALLY got her going and motivated....Polly Pocket Water Park. And let me tell you that sucker was Hard to put together! Oh well, it got her standing... Right around this time she got the tube out of her nose too...

"Prayers being answered faster than we can say them"

Around this time the pathology report came back - All Good - Free and Clear - NO CANCER. We already knew that this would more than likely be the case, but it's always nice to see it on paper.

She was doing well with her gum and ice chips but still was allowed no more. The Drs. were awesome - we saw them 2-3 times a day in her room. They just really wanted to give her digestive system some time to rest...Since the tube had just come out they wanted to wait till the next day (which was Friday). Which was hard, but they know best. She was so funny, she kept smelling my breath and telling me she smelled chips on my breath. I hated lying to her, but told her it was the food cart in the hall way - lol.

A bit later, the child life specialist came by and convinced us to head down to arts and crafts in the playroom. She didn't want to, but I told her if she walked down there, I would carry her back. She agreed and had so much fun....

Blowing bubbles in the playroom

It was a neat little apple tree made out of a paper lunch bag -she loves to glue so gluing the apples on was right up her alley. She even walked back! The nurses were so pleased with her progress.

When we got back to our room the child life lady had come back in to bring her a bunch of painting supplies. She had so much fun painting. I really could not believe that this kid had major surgery less than 48 hrs prior!

The rest of the day and night was uneventful and we had a good night's sleep!

 

[summerw]

Yup, Lymphangioma is usually in the neck - only about 2% of them are located elsewhere - see how lucky we are! lol The ones in the neck are usually found much quicker and are usually able to be removed completely. Interesting that they both had it - was there a genetic link at all? That is the kind of questions I have, but haven't had a chance to talk with the doctors yet.

I also absolutely agree with looking at thanking the trip for finding this. Whether it was a bug, or inflammation from the change in diet, traveling etc. I am SO THANKFUL we found it now, before it became an urgent situation. Everything worked out so perfectly.

Thanks for all the happy thoughts and yes, I agree, my husband's company is AWESOME *and* they have really good insurance, which I am finding out is a very good thing!!

Unfortunately, I don't think they ever got any kind of definitive answers, not even on the pathology... inconclusive, but it's been 10 years since my nephew's and 15 years since my brother's with no recurrance. I'm sure their testing is much better these days.

I read your most recent posts. Seems like she's still got plenty of spirit. That's a great sign. Isn't it amazing that when your kid is in the hospital, having to go in for your own surgery sounds like a vacation? Mine was in the NICU for two weeks when he was born with various tubing and IVs. He was so very lucky compared to so many of the sweet babies there, but it was still the longest two weeks of my life. And he didn't even know about french fries yet.

 

[geckodani]

That cast really was the coolest cast ever!

 

[Disney38Girl]

Child life specialists are the best! When I had my kidney transplant in '07, they would come in and play video games with me (the rooms at the Children's Hospital of Philadelphia had Playstation 2's). So glad to hear that everything went/is going so well!

 

[shalom]

She is doing so well - we were outside playing "red light, green light" for quite awhile this afternoon and she was actually running and skipping!

That's so good to hear.

Her birthday party sounds terrific! Yay for flexible family and friends.

I can understand hanging onto it, but I still keep thinking that cast must take up a lot more space than an autograph book would, and for some reason imagining it on a shelf with Disney autograph and memory books. "And that wasn't even the toughest Disney trip we've had," you'll say after people ask about it.

Glad she's healthy and you all weathered this as well as you did.

 

[emmysmommy]

Wow 48 hrs post op she was doing so well. So grateful that everything has gone so well during this time. You are a strong woman! I love hearing how so many people stepped in and filled whatever need you in the perfect way.

When you talked about how you carried Cassidy and laid her on the table I lost it. It brought me back 26 years ago when my middle son (he was 2 yrs old at the time) had emergency surgery on his eye. The only thing he kept asking for when he was ready to go into surgery was to keep his shoes on. He was probably under some Versed or something at that point but it was just so sad. I remember saying good-bye to him and kissing his little head and how hard that was.

A shout out to Wyatt for being so helpful during that time.

How 'bout some French fries???