Princess Alyssa's Christmas Wish/ GKTW/ Dec 10-16

[kdzbear]

I am praying that Alyssa is ok when you take her to the doctor today!

 

[pipersmom]

The thing that worries me everytime too is that one day they are not going to get 1 going. She already has about used up all of her veins. It gets harder and harder. We keep a bag packed that has her art supplies, my lil coffee pot, shower stuff, extra slippers for her, a universal remote (the one on the bed stinks and they never have any universals) we actually have the codes now to all of the tv's and dvd players on 1 lil sticker. Just odd and end things that we have figured we need on each trip so we just keep it in that bag by the way that bag has wheels which was also planned after too many sore backs and shoulders lol.

Im a lil bit ocd when it comes to stuff I guess but this is our life and we need it simplified however possible as you know too well.

You know I've never thought about taking a small coffee pot! Instead I go and complain about the crappy coffee and splurge once every couple of days at the gourmet coffee stand! Guess what's on my next shopping list now? LOL.

As to the IV/PICC thing..watching Piper get PICCs placed has always been one of the hardest things for me, simply because they can't knock her all the way out, and they could never get it on the first try. Right before they finally placed the port I watched them try...8 or 9(!!) times in one go. They couldn't get one placed and the tears were just rolling down my face from watching her have to go through that. I totally get where you're coming from. Keeping you guys in my prayers and hoping you get a really good person placing the IV!

 

[yinyanggirls]

The thing that worries me everytime too is that one day they are not going to get 1 going. She already has about used up all of her veins. It gets harder and harder. We keep a bag packed that has her art supplies, my lil coffee pot, shower stuff, extra slippers for her, a universal remote (the one on the bed stinks and they never have any universals) we actually have the codes now to all of the tv's and dvd players on 1 lil sticker. Just odd and end things that we have figured we need on each trip so we just keep it in that bag by the way that bag has wheels which was also planned after too many sore backs and shoulders lol.

Im a lil bit ocd when it comes to stuff I guess but this is our life and we need it simplified however possible as you know too well.

Chrissi, I'm so sorry she's sick and needs to go in. I can imagine her being sensitive about new "things".
Growing up my family was very healthy, no hospital stays or illnesses. When Phoebe had to stay in the hospital after she was born (about 2 weeks) my hatred of hospitals began. Most of the people are wonderful, so it's not that, but I just hate not having all the comforts of home, being interrupted every hour to have her poked and prodded, etc. The worst ever time was when she was 4 months old and had RSV and her sats were in the 70s when I took her in! They told me she should have been blue, but for some reason wasn't. Anyway, she was sick, I was sick (probably with the same virus), we were out of state so DH couldn't trade with me, I didn't want any relatives to get it so they stayed away too, and I was having my period that week. I had no idea she was so sick and would be admitted so for the first two days I had nothing personal with me. No change of clothes, no comfort items. It was the worst. Thankfully we have only had a handful of stays since then. You sound like you are an expert by now, so at least you have learned to cope with some of the inconveniences. I hope this stay is one of her better and shorter ones. Keep us posted!

 

[maroo]

Praying for you guys tonight!

I hope that you are home - but praying for you either way!

 

[chrissid7]

You know I've never thought about taking a small coffee pot! Instead I go and complain about the crappy coffee and splurge once every couple of days at the gourmet coffee stand! Guess what's on my next shopping list now? LOL.

As to the IV/PICC thing..watching Piper get PICCs placed has always been one of the hardest things for me, simply because they can't knock her all the way out, and they could never get it on the first try. Right before they finally placed the port I watched them try...8 or 9(!!) times in one go. They couldn't get one placed and the tears were just rolling down my face from watching her have to go through that. I totally get where you're coming from. Keeping you guys in my prayers and hoping you get a really good person placing the IV!

OMG thats crazy, I know exactly how you feel. We watch them try and try and try some more to get Alyssa's picc. Twice we watched her quit breathing and they had to intebate her right in front of us. All I could do was beg them to stop and the just cry. They got it on the attempt that I demanded they stop, but the doctor snapped and said and this is why I dont like parents in the room, my reply was "why so that you can think that you are so effin great when you finalyl get one but the child will be in so much pain from the 40 cuts you just gave her that she will lay on ice packs for the next 4 days...I dont think so, yea great job!!... I dont think so!"

she later came and appologized and I really felt like he was sincere as she almost cried when she said as a parent she cannot imagine how hard that must have been and that she was frustrated as a physician because she knew how important it was and didnt want all of that to be for nothing.

Now Alyssa can only get them if she is fully sedated so she has to go through interventional radiology because she does quit breathing every time. It a nightmare and that is why Alyssa insists on IV's. She says she would rather get 50 iv's than 1 picc line. She has just been traumatized by the events around it.

Poor Piper I just really want to hug her and you both....ughhhh sometimes you feel like the only person on the planet that deals with this crap, but I hate it that im not the only one because it just means more kids dealing with CRAP!!

Im getting really stressed tonight beause I know tomorrw is going to be rough as it is every clinic day.

 

[chrissid7]

Thanks Melissa and Maroo!! I will update as soon as we get the word tomorrow. Prayers are soooooooooo appreciated!!

 

[chrissid7]

I am praying that Alyssa is ok when you take her to the doctor today!

I will be going at 1pm tomorrow (well today now) and will post asap. Thank you so much!

 

[pacrosby]

Good thoughts and prayers coming your way.

Pamela

Matty's Wish Trip http://disboards.com/showthread.php?t=2325607

 

[maroo]

Praying!!!

 

[chrissid7]

Thanks everyone for your prayers and I would like to ask you to continue with them. It wasnt a good appointment

Her pft's were only at 32% and that makes me feel like crap just saying it! I am terrified and I can t even show it. I know that she is going to get better!!! I know it because I believe in miracles and I know ours is on the way, we just have to be patient. Have I mentioned how much I HATE CF!!!

This visit will be really hard because they are only allowing visitors that are over 18 and only 2 in the room at a time. I dont know if they are being flexible at all but I know when Alyssa realized that she was going to be in the hospital on Thanksgiving day she got very upset and then knowing that she couldn have her family visit made it worse.

The great news is that when we get out, she will be ready to rock and roll on our Disney vacation.


NOW HERE IS SOMETHING AMAZING >>> BE PREPARED

So Alyssa cried basically all the way home because of the changes to visitors and the holiday issue. As we were on our street approaching our house she sees her daddy in the driveway and she starts to get upset again because she just gets emotional when she is being admitted. He is walking bak from the mailbox and I notice some packages in his hand!!!!!!! I slam the car in park and Alyssa and I both jump out and im yelling...."DONT OPEN IT!!!!!!!". You wouldve thought it was a bomb LMAO!

He so casually finishes pulling a little box out of a slightly bigger box and it was just so cute and he says "Alyssa got a present" he is all grins right....so I proceed to tell him not to open ANY ANY ANY packages for ANY ANY ANY reason. He says, but it said Doane family. I had to explain how the whle things works.. Im telling him this as I finish gathering things from the car only to look up and sure enough he is opening the next one UGHHHH!!!! Meanwhile Alyssa is squealing with excitement which was so welcomed after the day we had!! So he peeks (such a kid) in the package and make the ooops face... like he accidentally saw it lol husbands right?

So I am so sorry Tricia and Kelly!!!!! I didnt get pics of it being opened but I do have pics!

Today was tears of joy and it was soooooo sweeet and perfect!! Alyssa nearly flipped and I am so getting a video for you all because its something about the way she says awwwwwwwww that will make you melt lol!

The tink bracelet is soo pretty and I got a pic of her sleeping with it on tonight in her tink pj's Thank you sooo much Kelly it is perfect and I she will wear it a lot, she loves it!!

Tricia the tote is amazing and I really wish I had caught her face on camera!!! It really is an awesome bag for a teen and she isnt going to wait for Disney to use it She was admiring it as alyssa too it out, before we noticed the "S" Alyssa read the letter and said "awe sissy its for you" she was so happy for her sissy. Its so cool that the "s" was for "Sissy" at that moment... too sweet! Thank you so much for thinking of her and you are so right ,Shayna is an incredible big sister nd Alyssa will tell you that too. There is a lot of love between them. Thank you again, what a great way to switch gears!

 

[pacrosby]

Chrissi,

I'm so very sorry to hear that it was not a good appt. In the hospital at any time is no fun but especially during a holiday (we were in over Thanksgiving for Matty's 3rd open heart surgery). Hopefully she'll improve quickly and be out sooner than you think. I'm rootin' for her

But let's focus on the happy news!! How exciting to be a recipient of the Big Give! I've read alot about how generous (and talented) those folks are.


Try and stay positive ok? Make a portable Mickey countdown and keep it with you at all times. It won't be long now 'til all this will be behind you and you'll be at Disney (and think, you'll get to meet ME)

Pamela

Matty's Wish Trip http://disboards.com/showthread.php?t=2325607

 

[chrissid7]

Chrissi,

I'm so very sorry to hear that it was not a good appt. In the hospital at any time is no fun but especially during a holiday (we were in over Thanksgiving for Matty's 3rd open heart surgery). Hopefully she'll improve quickly and be out sooner than you think. I'm rootin' for her

But let's focus on the happy news!! How exciting to be a recipient of the Big Give! I've read alot about how generous (and talented) those folks are.


Try and stay positive ok? Make a portable Mickey countdown and keep it with you at all times. It won't be long now 'til all this will be behind you and you'll be at Disney (and think, you'll get to meet ME)

Pamela

Matty's Wish Trip http://disboards.com/showthread.php?t=2325607

Thanks Pamela

I am excited to meet ya!!! another highlight to the trip yay yay! We are definalty making a countdown chain, im going to need it myself just to keep track of the time. The hospital always throws me off


I am still putting people together for the surprise home makeover and that has really thrown me for a loop!!! Ill get it all figured out though somehow someway.

 

[Momofwishkid]

Oh, Im sorry to hear about Alyssa's bad appointment and her having to be admitted. Prayers she's better soon and your home in no time.

Sounds like the Big Give was just what she needed at the that moment. Cant wait to see pics.

 

[HeatherSue]

I'm so sorry that Alyssa's appointment didn't go well. I can't imagine how hard this must be on her, and on you. I'll pray that she improves quickly.

I'm so glad that she got some Big Give packages that helped bring a little joy to her day!

 

[rie'smom]

Thanks everyone for your prayers and I would like to ask you to continue with them. It wasnt a good appointment

Her pft's were only at 32% and that makes me feel like crap just saying it! I am terrified and I can t even show it. I know that she is going to get better!!! I know it because I believe in miracles and I know ours is on the way, we just have to be patient. Have I mentioned how much I HATE CF!!!

This visit will be really hard because they are only allowing visitors that are over 18 and only 2 in the room at a time. I dont know if they are being flexible at all but I know when Alyssa realized that she was going to be in the hospital on Thanksgiving day she got very upset and then knowing that she couldn have her family visit made it worse.

The great news is that when we get out, she will be ready to rock and roll on our Disney vacation.


NOW HERE IS SOMETHING AMAZING >>> BE PREPARED

So Alyssa cried basically all the way home because of the changes to visitors and the holiday issue. As we were on our street approaching our house she sees her daddy in the driveway and she starts to get upset again because she just gets emotional when she is being admitted. He is walking bak from the mailbox and I notice some packages in his hand!!!!!!! I slam the car in park and Alyssa and I both jump out and im yelling...."DONT OPEN IT!!!!!!!". You wouldve thought it was a bomb LMAO!

He so casually finishes pulling a little box out of a slightly bigger box and it was just so cute and he says "Alyssa got a present" he is all grins right....so I proceed to tell him not to open ANY ANY ANY packages for ANY ANY ANY reason. He says, but it said Doane family. I had to explain how the whle things works.. Im telling him this as I finish gathering things from the car only to look up and sure enough he is opening the next one UGHHHH!!!! Meanwhile Alyssa is squealing with excitement which was so welcomed after the day we had!! So he peeks (such a kid) in the package and make the ooops face... like he accidentally saw it lol husbands right?

So I am so sorry Tricia and Kelly!!!!! I didnt get pics of it being opened but I do have pics!

Today was tears of joy and it was soooooo sweeet and perfect!! Alyssa nearly flipped and I am so getting a video for you all because its something about the way she says awwwwwwwww that will make you melt lol!

The tink bracelet is soo pretty and I got a pic of her sleeping with it on tonight in her tink pj's Thank you sooo much Kelly it is perfect and I she will wear it a lot, she loves it!!

Tricia the tote is amazing and I really wish I had caught her face on camera!!! It really is an awesome bag for a teen and she isnt going to wait for Disney to use it She was admiring it as alyssa too it out, before we noticed the "S" Alyssa read the letter and said "awe sissy its for you" she was so happy for her sissy. Its so cool that the "s" was for "Sissy" at that moment... too sweet! Thank you so much for thinking of her and you are so right ,Shayna is an incredible big sister nd Alyssa will tell you that too. There is a lot of love between them. Thank you again, what a great way to switch gears!

I'm sorry her appointment did not go well. You all remain in my prayers.

 

[pipersmom]

I'm sorry you're having to deal with all this hon. If you have time, maybe hit a local dollar store and pick up some Thanksgiving decs for her to put in the room? I bet you'll also find they are more flexible than it appears, I know the rules were the same on Piper's admission and the only thing they really stressed was not having younger visitors (ie, under 13 or so). Let us know once you guys are all settled in there.

Hooray!! For the big give. Hopefully someone will be able to bring you some of the packages that come while she's in the hospital. I can see those reeeeally brightening up her day. Praying and sending lots of hugs your way...

 

[tricia]

So sorry to hear about the bad appointment. As I was reading the post I was thinking 'oh no, and the package she comes home to is for her sister, and not even for her' I am so glad there was something there for her too, and that she was happy for her sister. The bag might need a little ironing to make it presentable, as I had to squish it up really good to get it in an envelope.

 

[maroo]

Definitely praying for you guys.

I am so sorry that you guys gotta go back to club med. But at least the tune up will get her good and ready for her trip!

I am so glad that the packages brought a smile to her face. How funny that her Dad was excited, too!

I am praying for you guys.

 

[chrissid7]

So sorry to hear about the bad appointment. As I was reading the post I was thinking 'oh no, and the package she comes home to is for her sister, and not even for her' I am so glad there was something there for her too, and that she was happy for her sister. The bag might need a little ironing to make it presentable, as I had to squish it up really good to get it in an envelope.

It wouldnt have matter if it were the only package honestly. Alyssa really is an appreciative child. She was as excited for her as if it were her own.

Funny thing last nigt I went and got the package and the bag to get the name and addy off of it, I had it sitting up against my computer desk and this morning it was gone, so she didnt even wait a day!!! Alyssa was looking for it too becase some of her siisy's friends stopped by to see Alyssa before we leave for club med and she wanted them to see it. Im still not sure why they werent in school today????? hmmmmmm. But we couldnt believe that she took the time this morning to start using it lol!

 

[tricia]

Good, it is nice when siblings can be happy for each other. It doesn't happen often enough with my boys