Brian's Wish for Magic!! MAW cruise 3/27-4/3/10

[Maryrn11168]

Well I will take a few minutes to at least start my trip report!!

Let me first introduce the cast members!!

Me (Mary) A fulltime Wife, mother, and housekeeper!! A partime L&D nurse!

DH (Bob) A wonderful husband and devoted Dad

DS (Bobby-11) Oldest child. Does not really care for the responsibilies sometimes, but is compassionate and truly feels for his brother when he is not feeling his best. Loves video games and pizza!!

DD ( Catherine-8) She is a piece of work!! Funny, outgoing, loves to sing and dance, and will probably follow in my footsteps into the nursing field!! She is always right there when the nurse comes to do things for Brian! She asks questions and the sight of blood does not bother her one bit!!

DS (Brian-6) Our MAW child. Brian has Cystic Fibrosis. for those of you who do not know what this is..It is a genetic disorder that effects the mucous membanes of the body, basically the lungs and the digestive system. He has been on medications since he was 3 weeks old!! I was lucky to have had him diagnosed while in utero (I was 21 weeks pregnant when I got the news! Like 9-11 it is a day that I can remember everything that happened, where I was, and who I was with!!) Brian is the light of my life, the apple of my eye and the thorn in my side!! LOL!! This has nothing to do with his illness!!! He is a very active 6 yo boy! He is as smart as a whip and picks up everything! He holds the record in school for the most number of times a kindergartener was sent to the principal's office!! It is a good thing she loves him or I would be looking for another school!!

Well that is the cast!! I will get into more details later but I just noticed the time and I have to get ready to go out!!

I hope you enjoy reading this!! I have enjoyed the ones that I have read!! Laughing and crying...sometimes at the same time!!!

Mary

 

[Nancy for Disney]

Great start. Keep it coming.

 

[patches07]

 

[Maryrn11168]

Wow, it has been over a month since I started this!! Well, I'm back!

Brian is so excited about his upcoming trip!! Let me tell you a little more about him...Brian spent quite a bit of his first 18 mos in the hospital. He seemed to get everything that his brother and sister would bring home!! He also got the flu after the vaccine and RSV after 7 doses of synergis (to prevent RSV)! He had his 1st set of ear tubes at 10mos, 2 more sets have followed and I just learned that they are out again!!

At 18 mos he had a mediport placed...this did not cut down on his infections, just his hospital stays, because now they could access him and we could do everything for him at home. As he has gotten older, and since he started swimming lessons, his number of respitory infections has decreased a bit. October and May still remain his worst times.

Brian loves Disney!! We purchased the DVC when my daughter was 9 mos old and Brian was not even a thought in our heads and I am so glad we did!! Since we already owned DVC, this has allowed us to vacation to WDW, Vero Beach, or HHI at least once a year, and I thinked it helped me to not be afraid to take him on vacation...I'm not sure if that makes any sense. Brian's first trip to Disney was at 7 mos old!

Since he has been to WDW so many times and he will be back, but he wanted to do something Disney related, he chose the Disney Cruise for his wish!! I'm jumping ahead to the wish......getting to this point......

May, as I stated earlier, is not a good time of year for Brian. We spent a few hours in the ED a week before his sister Communion (having to leave a friend's Communion party). After a few weeks of IV antibiotics, steroids and round the clock nebulizers he was as good as new!! His mediport was still going after 5 years!! Every month his nurse would come for port flushes and we would pray it was still good. I was told it would probably last 18 mos or so, and with his growing may need to be pulled, but we would keep it as long as possible. In September, actually Labor day weekend, his port was flushed on Friday afternoon, we went to town pool for the end of the season party, and by 8pm Brian was asking to go home...I knew something was not right since Brian never wants to go home!!!!

I'm going to sign off here because my battery on my laptop is going to die and I don't want to lose all that I just wrote!!!

 

[vikkil70]

Looking forward to hearing more!

 

[Momofwishkid]

another Wish trip! Im so happy Brian is getting his wish and a cruise sounds wonderful! Cant wait to follow along

 

[Maryrn11168]

Ok the computer is plugged in!!

ANyway, back to labor day weekend......We got home from the pool party and I took Brian's temperature....103.8 under his arm!!! Not good. Gave him Motrin and he fell asleep. 8am on the dot I am on the phone with the pediatrician's office and bring him right over to be seen. Tell the Dr. the whole story, just had the port flushed, etc....They test Brian for everything they can...strep, flu (both neg) ears are clear, lungs are clear. No obvious sign of infection anywhere.. he consults with the CF doctor and it's off to the ER for us. At the ER his port is accessed, cultures drawn and sent, antibiotics started, and eventually we get sent home.

Sunday around noon the phone rings and it's the CF doc with the news that the port is indeed infected, growing a fungus...yuck!!! He needs to be admitted for medications, etc. The admission was fast, right to room since they knew he was on his way. The medication they had to give him was nasty, they had to pre-medicate him with benedryl and tylenol to prevent a reaction!! Later that evening, the resident comes in and says they have to start an IV because he needs to get potassium and it can not go thru the port b/c of the antifungal medication is not compatable with it. SO the resident tries, no luck..then they get a nurse from the transport team, no luck after a few sticks. I happen to work at this hospital and I called my unit to find out what anesthesiologist was on....They can get an IV in anyone...It happened to be one that specializes in pediatrics...so he comes over....no luck. Between the cultures and the IV attempts we are now total 12 needle sticks in a 6 year old that recieved benedryl!!! All he wants to do is sleep!!!!

We decide that enough is enough and we will watch his potassium level and see..it was not very low, but the medication can make it lower. I text the CF doctor to update her to what was happening (she and I had been texting each other all night) and she asked why he couldn't take it by mouth, since he is able to swallow pills!!! are you kidding me!!!! so that is how we solved that one!!! I felt so bad for Brian that when my husband came to visit the next day, I left and went directly to Best Buy and bought him the PSP he wanted!!! Nothing gets you a gift faster than 12 needle sticks!!! He was so good....I would never have been able to tolerate it!!! I'm sure there was so much other stuff that he endures that day that I am forgetting about...chest x-rays and stuff. Well that was Sunday...

 

[xanphylus]

Subscribing!

Sounds like you're little guy is a trooper! I hate needle sticks and iv ones are even worse! Last time I was in the hospital I threatened to kick the nurse if she messed up my iv one more time- and that was only after 3 tries! Your little boy is def more brave and patient than I was.

 

[cmp1111]

This is a great start! Sounds like your kids are great.

Since this trip hasn't happened, yet, though, I'm going to move you over to the pre-trip report section. Once you've been and tell us how everything was, I can either move you back to the Trip Reports, or you can start another thread.

Thanks for sharing!

 

[Mtopher4]

I Found you Yeah.. Can't wait to her more.. Subscribing

 

[pipersmom]

Hooray, Mary..so glad to have found your PTR! I can only imagine what you went through with the port infection, I worry about that so much. At the same time, I'm heartened to see how long his port lasted. We've been told 5-6 yrs barring any huge growth spurt. At any rate, looking forward to following along, a cruise would be so neat!

 

[maroo]

I found you, too!!!

I will list this in the index on the Wish Trippers thread, too!!

You and your family totally deserve this trip! It is going to be awesome!

 

[Mtopher4]

Do they not have the 5 year ear tubes? My Ash kept her tubes in from 6 mos to almost 5 years old, we just had them replaced last April. I think they are called T tubes?

 

[Maryrn11168]

Do they not have the 5 year ear tubes? My Ash kept her tubes in from 6 mos to almost 5 years old, we just had them replaced last April. I think they are called T tubes?

He has had 3 sets of tubes. The last set were T-tubes, I was hoping to get more time out of them, but it was 2 1/2-3 years so I guess I can't complain.

 

[Mtopher4]

Poor guy Ask for T tubes again... At least they last longer than the 1 year or 18 months the other do.

 

[Maryrn11168]

As per the ENT we will keep and eye one things and see what happens. He is not looking to replace them too quickly.

Pre-trip report continue's.....

Monday and Tuesday were not too bad. Just continue his medications, repeating the blood cultures, etc. The doctor said Wednesday he could probably go home as long as everything cont'd as is. Wed afternoon all was well Brian was so excited that he was going home, when in walked the resident with the news that the cultures started growing fungus again at 44 hours. So the port needed to be removed. Now he couldn't go home and he needed surgery!! So Thursday morning we are told that Brian will be added to the schedule and they were not sure when he was going to go to the OR....do these people have any idea how hard it is to tell a 6 yo they can't eat or drink!??? So I called the doctor that had helped me out a few days earlier to ask him to take care of him in the OR, but I was not sure when we were going...Next thing the OR is ready for him and the are coming to transfer him now!! WooHoo!!! (I have some great friends!!!)

Surgery went well, sent back to his room and then home later that afternoon. I did mention earlier that this was Labor day, so in NY schools go back right after Labor Day...My other 2 went back as usual, but Brian missed his first day of First Grade!! I was so upset for him..not that he really cared!!! He has been a student in the same school since Nursery, my other 2 go there and I am currently the PTA president so our family is well known...I had been in contact with his teacher and the principal and his teacher assured me that his first day of school would be special for him!!

So Monday, into his uniform and off to school!! All is good! Wednesday evening Brian says to me, "mom, my boo-boo is dripping" Well, I didn't need the nursing degree I have to know that dripping is not a good thing!!! To the surgeon the next day, the incision is infected, now its open and we have to pack it daily, and do dressing changes and Keep him home from school because of a 2x2 hole in his chest wall. Brian is a very smart little boy, it amazes me the things that he knows. So academic wise I was not concerned about him missing school....but in 1st grade the routine is so important, and they change their seats often, the poor kid would not know where to sit or put his lunch box!! LOL!! A couple of weeks passed and we were still working on the infection, but also doing follow-up's with other doctor's. I did not realize how bad this infection could have been....the fungus could attack and sit on the retinas and cause vision loss. The incision site has finally closed, next the surgeon tells us that the tissue has overgrown the incision and now we have to 'kill'off this so the skin can grow. Ahhhhh!!! If it not one thing it is another!!

We are now midway thru October.....Brian starts with a cough, not too bad, he has definately had worse....but with the port gone I want to be on top of this, so I call the CF doctor and she says to bring him in. All looks ok, starts medication and tells us to come back in a week unless worse and to get a chest x-ray during the week. OK no big deal, actually we are headed to the hospital to see the surgeon so I can get it done today.

On wednesday, I am at work, Brian is at school, I call the office to ask a question mention that the x-ray was done do you have any results??? We will call you back...OK. I love his doctor, I get a text that he has pneumonia and we will need to admit for IV meds!! What...he has been so much sicker than this..He is in school!! So I leave work, go to pick him up from school and tell them. His teacher and I speak with him and he wants to stay in school. there was about 2 hours left and I had not gotten a plan yet, so I let him stay and went home to make calls and get the plan of action!!! He has terrible veins, when they did his surgery they put his IV in his foot after he was asleep....Where were they going to stick him now!!! And he is a good patient but the 12 sticks were still fresh in his mind, it had only been 6 weeks since that happened!! So the plan is a PICC line done under sedation as an out-patient and then IV meds at home. Not too bad. But the poor thing!! So they can get him in on Friday. Two weeks of medication and they took out the line. This poor little guy has been thru so much since Labor day and it is not even Thanksgiving!!! Winter has not even started yet!!

How we got a wish??? I love playing on my laptop and searching the web. I happened upon the Make a Wish web site and I really did not know how to go about any of this. How do you get one, who can get one?? I filled out the questions for someone to contact me for info and the next thing I know Brian qualifies for a wish amd his wish grantors are coming to see him!!! They came the Monday before Thanksgiving. They came in with presents for him...they were the most perfect gifts too!!! Action figures that he had been asking for!! Brian and I had many conversations about what he would wish for. He always said to go on on the Disney cruise!! to be continued......

 

[pnutallergymom]

Can't wait to follow along!!

Those infections are nasty!!! Brigitte has a broviac...got a line infection just 6 weeks after it was placed. Grew out 3 different bugs. Two of which had to be identified by the CDC in Atlanta!! It ended up needing to come out too. We did two weeks inpatient on Vanco and Meropenem. Not fun. She's a tough stick too...can't have a PICC because of her vascultature. She was blowing peripheral IV's 20 min after they were placed. I feel your pain....and Brian's too.

I can't wait to hear about the cruise though!!! So awesome!!!

Welcome

 

[pipersmom]

You guys have had a long year! I'm so glad they could get a PICC going, Piper is pretty much un-PICC-able now..lol. Gotta love how resilient our kids are though!

 

[Maryrn11168]

So I left off with the Wish Grantors coming and bringing him presents!! Which he loved!! They asked him lots of questions about what he liked and disliked, fovorite character, favorite restaurant, etc. I filled out lots of paperwork, then they asked if we had any idea of dates...I really did not want the kids to miss school. Normally I don't mind, I have pulled them for vacations in the past, but Brian had missed so much school this year, and the winter had not even started yet, so I was not sure how much more he would have to miss, so I asked for Easter week or Presidents week since they are out of school.

Waiting for the dates was the worse part, it seemed like it took forever!!My husband has no difficulty getting time off from work, he could find out today we are going away next week and he could get the week off. I on the other hand have to put in my vacations picks in 3 times a year, So dec 1st I needed to have my request in for any vacations in feb-may, so I expained my situation to my boss and she was fine with it , but when Jan 10 rolled around she really needed to know!! They can only have so many nurses on vacation the same week. I finally got a call from our wish coordinator and she had a question for me....on the week of our 1st request they had no cabins to fit all 5 of us,but they could get of 2 rooms that are NOT connected and should be close together!! Not going to work we would have to split up my husband and I, the kids are too young to sleep alone. Now as I can figure it the kids would all like to sleep in the same room as mommy and daddy would end up with a bachelor weekend and a cabin all to himself!!! LOL!!! Please check the week before for us, was my request!! They had a cabin to fit us all!! The kids will miss 2 1/2 days of school. I'm ok with that and so is their principal!! When I told her she said, nothing happens that week anyway!!! So March 27th-April 3rd we sail.

We get home Holy Saturday, I usually have the family for Easter dinner at my house, So I told everyone I am not cooking!! Do not know yet what we are doing, but It will not be here!! and I have to make sure that I have everything in the house before we leave, you know eggs to color, candy, jelly beans!!

I have not heard much from our wish grantors or the coordinator. Is this normal?? These boards are great, but with the diffences in each chapter what is normal for one may not be for another. So I am not sure what to expect.

I think I am finally up to date with this report. I am spending time trying to get everyone clothes together. The boys, this includes DH, will need new suits for formal night. I have been making magnets for our door, a Fis Extender for outside our door and surfing the web for what excusions to do in the ports!! We can't wait!!!!

 

[Mtopher4]

Awesome Glad they found a room to fit ALL of you

Your lucky your chapter allows a longer cruise. I was told they would bring me the information, tickets, etc.. 2 weeks before the trip. They don't really keep in contact until then.