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

[DopeyDonald]

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.

She definitely has plenty of spirit! lol She was kicking her legs hard the night after surgery to show her displeasure with being held down to have her tube adjusted...and she was kicking HARD! lol

And yes, a night in the hospital for myself sounds lovely at this point... - kind of like that Good Luck Charlie episode where Amy talks the Dr. into admitting her for her eye! (Not to make light of people who really DO need to spend time in the hospital - I'm sure they would trade places with me in a second.)

That cast really was the coolest cast ever!

It definitely made it more bearable....

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!

Thanks. Yes, they were lifesavers - they are really good at what they do!

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.

It's so funny - I remember being just devastated upon hearing that, yes, it was broken. I was so heartbroken for her. All I could selfishly think of was her not being able to stand with the characters, do BBB etc. But my friend told me to just wait, that I would actually look back on those pictures and love telling her the story of the Disney trip we took with her in a cast - and you know what - she was right!!

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???

Oh that breaks my heart about your son and his shoes - because I can just picture it - they are just so darn little! And so totally dependent and trusting of us. And that kiss - you want to stand there forever breathing them in, but you can't. *ugh* I just relived it - lol....

And yes, my son was a great help - 95% of the time. The other 5% I wanted to strangle him. I would be laying in bed with Cassidy trying to calm down her French fry cravings and he would ask me in the way that only 11 yr old boys can "Hey mom, should I run down to the playroom and get Monopoly for us?" *sigh But don't feel too bad for him - he was rewarded with a Broncos sweatshirt from Daddy upon returning home....

*edited to add - She finally got her French fries for lunch on Saturday....will post about that soon... lol

 

[lovelygirl1975]

I just found your trip report. I cannot imagine what you and your family have been through...just sending you prayers and happy thoughts. Thank you for sharing about this.

 

[DopeyDonald]

Friday - the almost big day - today would be clear liquid day - *almost French fries. At first clear liquids were well received. Then we realized that they are NOT French fries! lol

She got to have Jell-O for breakfast as soon as the Dr. rounded in our room - around 9am or so. Shortly after the nurse came in a said that she would be going to ultra-sound at 10am. So it was around 9:15 I decided that after wayyyyyy too many days a shower was needed. I left Wyatt in charge and headed off to find the shower room.

I got in there, showered and stepped out to dry off - no towels. *sigh* Oh well there was a stack of washcloths that sufficed - lol. I got dressed and headed back down to the room where I was met by a very agitated Wyatt. The nurse was looking for you - ultrasound called and they were ready for her. - It was only about 9:35 at this point - since when are appointments every early?? When I decide to shower I guess.....

So I went and found the nurse, who called U/S who by then had moved on and would call when they were ready again. It was about 10:50 by the time they called - oh well, we had no where to be - lol.

Oh and in the meantime, she had managed a toot! You have no idea what big news this was with the nurses - I thought they were going to throw her a party. Check that one off the list I guess.

She was being a bit of a stinker this day - I think she was tired out from the day before. I think she was also hurting a bit, but didn't want to say anything for fear they would mess with her tummy. She didn't want to walk down to U/S - she wanted to be carried. So I made her a deal - I would carry her down, but she had to walk back up. She took me up on that.

So we headed down as soon as they called and were seen right away. She wanted to me to lay next to her, which was fine by me as I knew she'd be a lot calmer. So the 2 of us laid on that tiny table and she did just fine. It took about 15 mins and we were on our way back up. She did hold up her end of the bargain too and walked the whole way.

When we got back to the room here's what was waiting for us...

This is the hugest bunch of balloons I have seen - this pic does not do them justice. Those Minnie and Princess ones are the coolest round balloons I have ever seen - and you gotta love the Mickey Head!

Then a few mins after we got back a delivery man with 2 boxes from Amazon arrived and these were in them...

Believe it or not, the balloons and stuffed Mickey and Minnie were from one of my husband's accounts. My DH is one of those guys that just talks to everybody and goes over and above FOR his accounts, so I guess they wanted to do something in return *example being a few times now one of his accounts will either forget to order or will misorder and they won't get something (usually something very important) and being as they only get trucks once a week it can be a big deal. So my DH will hop in his truck, drive down 3.5 hrs down to Minneapolis, pick up the missing item, and drive it to the account - which is around 4 hrs in the opposite direction from our house. So around 15 hrs and LOTS of miles.

Not long after that excitement, she got to have some chicken broth, which she ate about half of. She LOVED it at first, but after 10 bites, got mad cause she kept waiting for the next spoonful to have the actual chicken on it!! lol

After chicken broth came the 1st of 4 popsicles -

Here's what Wyatt was up to....again...lol IPod and school...

The Child Life lady came in a bit later and asked if she could borrow Wyatt and Cassidy for a Wii tournament. Cassidy didn't want to go - she was starting to get a bit crabby.

Now here's the ONLY slightly negative thing I have to say about our time at Children's. The Child Life lady was AWESOME, she really was and I can't even be too mad at her for this. BUT....she tells Cassidy, "Oh, you should come down and play Wii with us - there will be cookies and lemonade." *SIGH* The look on Cassidy's face when she turned to look at me will forever be etched into my brain. The sheer HOPE and JOY on that child's face was heartbreaking. I didn't even have the heart to tell the child life lady what she had done - I just ushered Wyatt and her quickly out before I had to break it to Cassidy that no she couldn't have cookies.

It actually went much better than I thought. I told her that we would have them wrap up a cookie for her and she could eat it tomorrow. She seemed to accept that. And it turns out when Wyatt got back - he really had fun and was a great help to the little ones - that the nurse OK'd the lemonade - so that was good. And she got her little pack of oreos, all sealed up thank goodness, to hang on to until tomorrow. Whew - crisis averted.

Here she is watching a movie, waiting for brother to get back:

The rest of the evening was filled with more Jell-O and popsicles. Her tummy had finally started making some more noises which the Dr. was pleased with, so when he came on his rounds in the evening, he told us that she could eat in the morning! Yay! Mommy liked to hear this, but Cassidy, was wanting to eat NOW. Oh well, a few more hours of "I want French fries" wouldn't kill us.....

The rest of the night was just fine. She was a bit more tired out than the day before so I think we turned in pretty early....

 

[DopeyDonald]

I just found your trip report. I cannot imagine what you and your family have been through...just sending you prayers and happy thoughts. Thank you for sharing about this.

Thank you - we take all the prayers and happy thoughts we can.

 

[DopeyDonald]

Saturday - food day! This was going to be a great day! Right?!

True to his word, the Dr. was in bright and early, listened to her tummy and said - Yup, she can eat! yayyyyyyy!

I quickly called room service and ordered her a sausage patty and a hard boiled egg - weird, but what she wanted . She may or may not have eaten the package of 2 oreos while we waited for the food to get here .

Here is the clandestine Oreo pic

Now the rest of breakfast:

You'll notice that in these pics, she's still in bed. I should have paid more attention to how she was acting, but I was just too excited about her getting to eat. She had her breakfast and then didn't want to do ANYTHING. I was so worried about her. We tried getting her to paint, or color, or play Polly Pockets, but she was just plain not having any of it. She wasn't crying or fussing, just pretty disagreeable.

Looking back, removed from the situation, I see it for what it was. She'd had surgery 3.5 days earlier and just had 2 BIG days in terms of moving around, walking etc. and her body was telling her to slow down. But at the time, all I could do was worry.

It didn't help that in the morning when the Dr. came in to see us, he mentioned that *MAYBE* just maybe if all went well today, we might be able to get out that evening after his evening rounds. (we would have just checked into a motel down the street but still)

So I think as the day wore on and she was seemingly doing worse, I saw that hope fading fast. It also wasn't helping that we got a kinda crabby nurse. One out of all of the nurses we have was not bad, and we were due for one. And in hindsight, I 'm sure it was us too, but she WAS kinda crabby - lol. It started when because Cassidy could eat now, she had to go back on her Celebrex. I usually mix it with pudding or yogurt, but the nurse mixed it with apple juice, which Cassidy doesn't like *without powdery Celebrex in it. So we had a battle on our hands.

She put it in a syringe and pretty much put it in her mouth and squirted, but then when she wouldn't swallow, she pinched her nose and rubbed her throat. Which again, I'm sure is what they should do, and looking back it's kind of funny, but at the time, I was just kinda done. I had to step in the bathroom for a minute which ticked Cassie off even more.

After we had that moment, we just laid in bed and watched a movie or 2. Then she decided to order lunch and she got to have FRENCH FRIES!! Yay!!!! She ordered meatballs and French fries and ice cream. She ate all 3 meatballs, but only a few French fries Oh well, her brother and I helped her with the rest.

After lunch we laid around a bit more, until the nurse said she'd really like to see her moving around a bit more. so we did a few laps around the floor, with me carrying her part of it. The rest of the afternoon, was a bit of a blur, in all honesty.

When the Dr. did his rounds he confirmed that yes, there would be no going anywhere tonight, but more than likely in the morning. I was prepared for that at this point, but it didn't make it any easier to hear.

Also, I lost my boy around 6pm. His friends from our hometown were down in the cities for a Vikings game on Sunday and were picking Wyatt up to go overnight to a hotel and then to the game on Sunday. So he ran down about 5:30 and got me some supper and then left - I was so happy for him to be with his buds, but I was going to miss him more than I realized. I don't think I realized how nice it was just to have someone else to talk to and be with. And give hugs too.

So then Cassidy ordered some supper - chicken strips and mashed potatoes. She ate a bit of the chicken - it was pretty crunchy breading though and she was having trouble with that. She did manage to have a few more oreos though...

After dinner is when the pity party really started. She was having trouble peeing now too. I think once the IV came out the night before, she just was having trouble with getting herself to drink enough. We were encouraging her to drink, drink, drink, but she's my camel and doesn't pee a lot to begin with. Couple that with being uncomfortable from having to poop, but not wanting to and it's not a fun time..... long story short, we were back under the gun. Pee by 8pm or cath time. So.

It's 7:30, she's sitting on the potty, I'm kneeling in front of her begging, pleading and cajoling. And we both lose it. She's crying, I'm crying. She notices I'm crying and asks why. I tell her it's because I with I could take this all away and make her better and I dont' want her to hurt anymore. Then I say maybe we should say a prayer right that moment and ask God to help her pee. This lightens the mood as she kind of sob giggles and says "You can pray to ask God to pee?!" And I say yes, you can ask God for anything - he always wants to hear about anything.

I think the combination of prayers and relaxing due to the laughing and crying, (and maybe a threat or 2 about the cath) finally led her to pee. Yay! But now I was exhausted from all of the emotions. So her and I went to bed super early - like 7:30 early (and we are NOT early to bed people). I dozed a bit, but then woke up when the nurse came in for vitals around 10. That's when I got out of bed and started this trip report.

I just had so many thoughts and emotions at that point. Plus my buddy was gone and I was lonely. So I stayed up WAYYYYYYYY too late and got to bed around 2:30ish....Good news was though my baby was sleeping well.

 

[DopeyDonald]

So with the day we'd had before a small part of me was worried that they would keep us longer.

BUT - the Dr. came in extra early, checked her over -and said "would you like to get out of here today?" And I said - YES! He said that most kids reach a point that they will start doing better at home and the hospital will actually slow down their recovery because they don't like being there. He went over all the things I should be doing for her and watching for, but said - See you later!

At this point here is what Cassidy was doing....

Yep, still out like a light. I couldn't wait to tell her, but I could wait until she woke up!

Once she woke up the nurse came in and set about removing her IV. It had been disconnected on Thursday night, but they kept the actual IV in her hand in case they needed it. (that had been another sore issue with her - they would have to flush it every 8 hours and I think it burned when they did it) So she was Happy to see that go.

While the nurse was doing that she was having breakfast. Another sausage patty, scrambled eggs with cheese and some yogurt.

No more IV's mom!

Loving breakfast

After breakfast, we loaded up our room and once we got those discharge papers - we were gone!
We hauled all of her stuff to the car, got the car situated and loaded - took some finagling with those balloons, but after about 15 mins we were ready! I put the car in reverse - ease onto the gas. "mom, I have to go potty". *sigh
I start to unbuckle her...NO, I dont' want to go back in. I say there is a bathroom right by the elevators we'll just use that one. NO. She says "I want to go at a place like we went on the way down here." (we had stopped at a gas station) OK I say. We have to go quite awhile as I want to get out of down town first. So we stop in the first suburb that is out of traffic a bit and we get gas and she pees.

We get back on the road after loading up with cherry icees and cruise along for about an hour. We stop for tacos - drive thru as she is really just wanting to get home. Pull out of the drive thru - get settled with opening our tacos...."mom I gotta go potty" *sigh, get tacos folded back in wrappers, get unbuckled, go inside. No can go. I think she tenses up when she has to go and has trouble relaxing (plus she had to go #2 also and I think that was complicating things) So back out to the car, get settled and eat our tacos.

At this point, I put Scooby doo on the dvd player and just drove. We didn't stop again - she fell asleep and we made it home around 3pm or so.

We got in the house and she stayed sleeping for a few more hours. This worried me of course and I was very happy when she woke up and peed and was hungry.

After she woke up she wanted a sandwich and chips and to eat on the couch with her buds.

After a bit, Annie's friend came over and they all played cards

I think this look about sums up how happy she was to be home...

 

[DopeyDonald]

Updates and final thoughts:

We got home Sunday, September 22nd. We had a pretty quiet week, didn't venture too far. Spent most of it catching the kids up on school work and trying to coordinate Dr. Appointments back down in Minneapolis for next month.

The Dr. from DOCS (the on call room service Dr.) DID actually call me back on Tuesday (I think - lol) I was impressed that he took the time to call. He said that he had received my email and just wanted to check on her and see how she was doing. I thought it was a VERY nice gesture. Even though, he glossed right over my "feedback" regarding his pushing us to "get back in the parks" and the other attraction recommendations. He also wanted to let me know that he Did NOT feel anything when he palpated her abdomen or he for surely would have let me know. I got the impression he was making sure I didn't blame him for any of this. I assured him that even once the Drs. knew the mass was there they STILL couldn't feel it.

All in all, I thought it was very nice for him to take the time to call me back. I honestly have no complaints about their service, however, I'd be hard pressed to call them back. Maybe for an ear ache or sore throat, but that's about it. Just too many variables and things they cannot diagnose without proper equipment and tests.

I was also followed up with a phone call from her actual surgeon himself. I was very impressed with this. He made sure she was doing OK and to see what we had planned for follow-up.

Here's what the plan is:
She will go back down to Children's on Oct. 15th for another MRI. She will have to be sedated for this one also as it's a long one. Then later that day she will see a hematologist/oncologist who specializes in vascular anomalies. Whew - those are big scary words! lol But it will be nice to actually discuss her condition. Things have gone so fast and furious, we really haven't done that. We know the basics of it from what they told us and some brief googling (I know better than to google too deeply. lol) but haven't really discussed it yet.

She saw the pediatrician at our local clinic yesterday, just to do a post-op check. This was the awesome Dr. who called and got us set up with Children's in St. Paul, when the FL Dr. dropped the ball. I and Cassidy REALLY liked her - she will be Cassie's new primary. She thought her belly was looking outstanding!! Yay! I was kind of worried that it was a bit puffy, but it's so hard to tell on a kid that age - all of their bellies stick out a bit. But the Dr. was able to tell me that the kind of distention that they are looking for would happen quickly and be VERY pronounced - there would be no wondering. So that put my mind at ease. All of her other vitals looked good - AND She's gained 2 lbs back already!! Woo Hoo!! We're definitely on the right track!

And finally to bring us right up to speed: Here she is today.

The pics speak for themselves.....

Ready...

Set..Go....

I won!!!

Thanks to you all for following along, with my not so typical trip report. It feels so good to have a written record of all that has happened. I've even been copy and pasting and sending to my relatives who live far away.

I dont' know when we'll get back - it may be as soon as December or as long as next September. It will depend on how her rechecks go and what is decided for her treatment. Her and I may sneak off to DL in CA in January if the Dec. WDW trip doesn't work. My aunt lives in CA and we could do that for much cheaper.

It's funny, I feel a bit mad at Disney right now (not anything they did) but just kind of mad. LOL Especially at the WL. Again, not at anything they did, they were awesome. I just look at pics of the lodge and I just don't feel like I have to stay there next time - it's so strange - I suppose I'm associating bad feelings with that, but it's killing my DH - lol He's afraid I'll never stay there again.

Also, please know that I appreciate every last one of your kind words, thoughts and prayers. I do realize that this situation could have turned out a whole lot worse and we are the lucky ones. Seeing all of the kids we saw at Children's just drove that home. WE ARE BLESSED.

 

[shalom]

So glad she's home and happy.

I forgot to say that I could really relate to your "french fries means I hurt" story. Pain management with kids is tough. Sometimes they're looking for a solution that wouldn't work, they way your daughter did, and sometimes they just can't communicate well. I used to ask my kids, "Where does it hurt?" and they'd point to the area of the room where they got bumped. Sometimes moms have to be mindreaders, and staying in the hospital when you're tired and stressed yourself doesn't make that easy. I think you guys handled things beautifully for your little one.

 

[jennyjinx3]

Thanks for sharing your families story, it is a reminder of how precious life is and how we never know what is around the bend. I wish her nothing but the best and hope you can return for a do-over at Disney soon.

 

[lovelygirl1975]

I am so happy to here that your baby is home and happy. Life truly is a blessing, I find myself learning this lesson over and over again. Last year my 13 year old sister was in a diabetic coma. I didn't know she was diabetic until the day my family called to tell me that she was in an ambulance going to a children's hospital. I cannot put in words how it felt to see her in that bed. And just like you said we felt so blessed and lucky when she went home. Also, just like you said seeing the other families I knew again we were blessed. Your story touched my heart immensely, and I am so glad you shared it.

 

[mom2cgj]

Thank you so much for sharing your story with us. I'm sure it's been very hard to go through all of this, but your little one is doing so much better. Blessings to all of you!

 

[BridgetR3]

I'm so glad that she is home and well!! Oh to see her run!!!

I have enjoyed following along on your journey and will be praying for you as you continue with the appointments.

 

[annie170]

I really admire your courage to put this trip report together. I hope and pray Cassidy continues to get good reports from her doctors. Please keep us posted on how she is doing.

 

[agameofthree]

This is probably the most amazing trip report I've ever read. We were in WDW at the same time you were, and at the same parks, so now I wonder if we saw you while you were there. Sending Cassidy positive thoughts.

 

[LittleBlueFlower]

So Happy to hear you are home. Keeping Cassidy in my prayers.

 

[Wood Nymph]

I just found and read your whole trip report. Wow, that must have been a really hard three weeks. I'm so glad that you posted those final pictures of your daughter looking happy and healthy. It must be nice to get back to a normal life again.

I thought it was lucky that you had your mother at Disney when all this happened. And the two bedroom villa must have been handy, too.

 

[Moira222]

SIGH just like with Disney, I love stories with a happy ending


SO SO glad that Cassidy is home & healthy along with the rest of your family.

I LOVE the fact that your kids bought your sombrero & wore it around the world and in the airport. They missed you for sure!

I just laughed and cried over your TR even more than usual .... cannot imagine laying down with my daughter on an OR table & then giving her a kiss on the head. OMG.

Nice that Cassie had her special princess tea party for her birthday - how thoughtful of your friends & the hospital to help with a space for that.

Hope you make it back to CA or FL soon for your make up trip...and I hope I see your TR on it too!

 

[jwgm2012]

I'm so glad your baby is home and healing. Prayers for a pain-free and full recovery down the road... there is a light and it sounds like you have a great team of doctors that you're trusting with her care. That fact alone will ease the journey.

I'd be mad at Disney too - not for anything but just by association! And that happens all the time - you've written a report filled with "real" feelings about ambiguous situations and scary times. I think you captured what many of us have felt in the past in helpless situations - not at this capacity for me, but still helpless... You'll always play the association game and WL equals surgery equals pee equals French fries! See? Simple. LOL

Best wishes to you also as you get back into the swing of things. I'm glad you wrote - it's healing for you also.



gina

 

[DopeyDonald]

So glad she's home and happy.

I forgot to say that I could really relate to your "french fries means I hurt" story. Pain management with kids is tough. Sometimes they're looking for a solution that wouldn't work, they way your daughter did, and sometimes they just can't communicate well. I used to ask my kids, "Where does it hurt?" and they'd point to the area of the room where they got bumped. Sometimes moms have to be mindreaders, and staying in the hospital when you're tired and stressed yourself doesn't make that easy. I think you guys handled things beautifully for your little one.

I'm still kicking myself as I know the nurse was for not figuring that out sooner! Those charts they have with the pain scale help a bit but....
Too funny about pointing to the area of the room - funny how our brains are different - kids are so black and white...

Thanks for sharing your families story, it is a reminder of how precious life is and how we never know what is around the bend. I wish her nothing but the best and hope you can return for a do-over at Disney soon.

That is so true...I look at pics of our Park Fare Dinner and I'm shocked that just a few hours later all heck broke loose.. lol

I am so happy to here that your baby is home and happy. Life truly is a blessing, I find myself learning this lesson over and over again. Last year my 13 year old sister was in a diabetic coma. I didn't know she was diabetic until the day my family called to tell me that she was in an ambulance going to a children's hospital. I cannot put in words how it felt to see her in that bed. And just like you said we felt so blessed and lucky when she went home. Also, just like you said seeing the other families I knew again we were blessed. Your story touched my heart immensely, and I am so glad you shared it.

Thank you - I'm so sorry you had to go thru that with your sister. I hope things are under control with her and she is happy and healthy now.

Thank you so much for sharing your story with us. I'm sure it's been very hard to go through all of this, but your little one is doing so much better. Blessings to all of you!

Thanks for the blessings

I'm so glad that she is home and well!! Oh to see her run!!!

I have enjoyed following along on your journey and will be praying for you as you continue with the appointments.

Thanks for the prayers - they are what have her up and running!

 

[DopeyDonald]

I really admire your courage to put this trip report together. I hope and pray Cassidy continues to get good reports from her doctors. Please keep us posted on how she is doing.

Thank You. I will for surely keep you all posted. She has a follow-up MRI on the 15th of October along with an appointment with a vascular anomalies specialist. Will update after that

This is probably the most amazing trip report I've ever read. We were in WDW at the same time you were, and at the same parks, so now I wonder if we saw you while you were there. Sending Cassidy positive thoughts.

Thanks - that is too funny that we were in the same parks - I'll be we saw each other and didn't even know it! Thanks for the thoughts.

So Happy to hear you are home. Keeping Cassidy in my prayers.

Thanks for the prayers

I just found and read your whole trip report. Wow, that must have been a really hard three weeks. I'm so glad that you posted those final pictures of your daughter looking happy and healthy. It must be nice to get back to a normal life again.

I thought it was lucky that you had your mother at Disney when all this happened. And the two bedroom villa must have been handy, too.

It is so nice to get back to reality. My body is fighting me though - I am so tired and she is raring to go!! lol

It was definitely great to have the villa and my mom - worked out for the best - I can't imagine having to get all 5 of us figured out at the hospital and flying back on short notice like that...