Brady Co of San Diego on Nov 5th raised 32,000 dollars for Kourts krew. Kourtney herself was able to make it to the event and hold the giant check. Kourtneys mom was brought to tears. It was a day that durring the planing of Kourts Krew we had dreamed of. There are so many things that can be done to help the families in Kourts krew. Laura the founder of kourts krew was on hand to remind people of the the need for organ donation and how without it kourt would not be alive today. The green awareness ribbon remember it stands for Organ donation and transplant awareness. Kourtney’s mom has since had one tattooed on her ankle , it means this much !! ” I want it on my body forever” Dont ever forget that Parents who donate their child organs when they die are angels on earth
WOW…What a whirlwind of a weekend. I am so happy that kourt was able to have those 4 days out. She did have a good weekend and we did several of her to do things. She was pain free and happy. It was worth every minute to have her out. The tree outside of our Apt has a squirrel in it and she got to watch it run all over, she had Mikey (her dog) Her sisters spent the night and all we were missing was Ty who Might have a bug so I did not want to take the chance. We ate meals together and went for walks and to the mall, We took the van and Kourt said its been a long time since I was in a car. She was so happy for the little things. She was upset about the hospital but at the same time she knew she needed the care. So we will chill for a week? maybe less work out the kinks in the supplies and how I am going to work things at the Apt. Laundry is a Huge issue….Bedding is a nightmeare, I did not realize how often she needs her bed changed. and clean sheets. The wheelchair they gave me is for someone who is 4ft tall to push it. I seriously went over a bump on the sidewalk and parts fell off. It is a pain, plus I have two pumps and kourt is not mobile at all, walking only a little bit. So I took her SSI money and bought a wheelchair that wont fall apart and has extened handles for people who are tall like me. I also bought her a new pair of glasses which she needs and has been asking for. Its is a ton of work but so worth it .
People have been asking if we need anything below are things kourts krew could use
gift cards : Ralphs, best Buy, Trader Joes, Whole foods, Target, Bath and body, CVS, Justice, old Navy, gas cards
Things needed wish list
cook wear (baking stuff, great thearpy and so fun)
matress topper for hospital stays
wireless headphones for hospital TV
aroma theapry things for parents and kids
pillows for parents and kids that are not plastic they will keep them.
socks with grips on bottom
travel size tooth brushes, shampoo, razors , soap, Etc
Little things for kids to do when they are in the ER waiting for a room.
Thank you for always supporting Kourts krew with thoughts and prayers
Transplant is amazing and while kourt is getting to do things she has never done before this is a treatment not a CURE. Most people think ….oh well she got her Transplant she is all better and ride off into the Sunset. Maybe in Hollywood where people come out of the OR with one IV and breathing their own. This is not how it really is. Transplant give you the chance to really FIGHT for your life and have a great shot and a normal one. No one knows how long Kourt will have these organs but there is no date that they expire. She may live to be 100 with these Organs but studies show 5 to 10 years. 5 to 10 years of wonderful is worth a lifetime of nothing. Knowing this we are greatful for the new life but at the same time realistic and know the medical care for Kourt will never stop. It will be less but its a lifetime of meds. Which we are all fine with. It takes fine tuning and constantly staying on top of it all to give Kourt the amazing life that she so deserves. She is still sick, a fresh Transplant comes with many dos and dont’s . The good news is that in this over a year long hospital stay I have “earned” a much ealier release then most families and the fact that I have local housing and can come to the hospital everyday, has given the team of Docs the confidence that we can take care of her outside the Hospital. I was asked whats another week when you have been here a year ? My reply Its a week that Kourt could have her dog with her, its a week that she can go to the park and swing on a swing, its a week I can walk down the street with her. Its a week that I can start her new life. How can you say no to that?
THE RULES!!! We have not come this far to lose it all. she has no immune system at all right now. I will be a raging crazy women to enforce these rules.
If your sick a week before, had a fever, starting to feel sick, even if its allergies Teething or something you ate, have no fever…you can NOT be around kourt. I will ask, and give health screening before seeing Kourt.
No flowers or plants indoors
No close contact with anyone
Mask outside of your housing
Gloves if she touches anything/ hand stantitizer
No children other then siblings in the same room with her
sunscreen outside/ dont overheat
No school for a year
No public places for a year (like disneyland) When she is doing well I will beg and promise mask and gloves
No close contact with anyone who is not up to date on vaccines including the flu shot. (which means if someone in school,when she goes back will have to get them or I will be told which children that can not be around Kourt)
Kourt will always have a supressed immune system because of the anti rejection meds which she will be on for a life time. She also does not have a spleen which put her at more of a risk…..Other then that she is a NORMAL kid:-)
In the words of sponge bob ( only allowed cartoons in hospital) It was the BEST day ever.
Well to start I cant wipe the smile off my face, I am so grateful, so excited, so amazed, so inspired by My daughter. Thank you kourtney for making me the Person and mother I am today. Today was the first day in over a year Kourt was without a IV pole . Then at rounds The amaing Dr Farmer said well” I think she can go to the Apt next week, but you said you would bring her for labs everyday” YES!!!! Let Kourts new life begin. She is still very weak and get tired very easy but She has been off TPN for a Week, his alone I am amazed at. I just cant express my joy.
Things I am grateful for(inspired by sarah P)
Life grounding: Transplants, family, home, Make A Wish
Living: Resourcefulness, Bright side, Thinking, Understanding, Peace
Guity pleasures:Diet Coke, coffee, air conditiong,peanut butter, hot bath
I guess I better start finding a Glitz pagent and looking for a dress for Kourt because in no time she will continue to be the center of it all ..only this time she will have a stage.
Really? I go home to straighten up and. spend time with the big kids only to have one of them be sunburned and not do anything, the other has a allergic reaction to shell fish and cant breath. I have to find beadryl and get her to breath, that plan does go over well and we are on to the next . the weekend was filled with cheer all weekend for the girls….the boy was still to sunburned to do anything….Which I just rediclious. Mom cleans ,cooks, washed and dried clothes ….I got it done all of it ….only to have the toliet overflow all over the downstairs, what a gross mess. This is going to be a mess for days . I am kind of glad I am in LA …I just cant keep cleaning up messes. It is Marks turn to deal with it. while TY works to keep the cable and internet on on our house. I hope he makes enough,
How do I do it? Is the question asked of me most…. I dont know how, I just do. The sad thing is that its Normal!! crushed ice ,pushing buttons for everything, chucks pads, and eating a meal in the same room a ostomy is been measured. Cath, labs, and output are the most used words of the day and when your child does a art project you use hospital suppiles. Where fun for them is getting into cloraprep wands and gauze and sterile gloves. I can rattle off kourts labs and I understand picu rounds and even know the answers the new residents dont. I am told “Laura you cant answer”. This is my world it is a crazy sub world inside a huge universe. I have taught several Drs who never see the other world text lingo and about pop culture.
I sound crazy at a gathering talking about ostomy output and excited that when feeds go up and TPN goes down. Instead of showing pics of my childs face I show open a belly and the progressing of how its closing. Oh well…..This is why My Hospital mom friends are the best …We have such a strange sence of what is funny, but they are the only ones who really understand. We have cried together, laughed together and have played jokes on Drs together. They are my Family …..When your in the Hospital The real world does not even seem to exist.
Grateful for Hospital moms ……All of you
I really want to venture into the real world…..I would like to sleep on a beach and have a drink in a glass cup. Someday ,someday:-)
A year ago today around 6pm I got a phone call…..It had been a very hard day for kourt her pain was getting worse and she was retching all day. We were going up on her fent patch and she was a beast that day . I had gone to my room to give myself a time out and I had just started to think …How can she go on like this? My phone rang and it was Transplant telling me they had a offer and that We should prepare to come to LA , 15 min later we were told to make the drive . We had already done this twice and were sent home in the past. It turned out the Transplant was a go but sadly kourt would go into rejection and would be re listed. unable to leave the hospital Kourtney lived there, going to school, playing in the playroom, Making friends with all the kids like her. We did our best to make all her days fun and make it most like home as we could. WHich backfired everytime we has to change rooms. Where we are today is seeing the road home after the longest year …June 15 she was given her second gift of life. My goal is have her spend Halloween at are home its her favorite time …she loves costumes. I missed a whole year of the other kids lives , I tried my best to bet there and was always there when they called or had a event that only mom could do. Keeping on!! After one year in the hospital my advice is get over having any spece to call your own. Just go with the flow, if you dont you will make things worse. Its like prison in some ways only We pay to be there. living in a place where everything has protacol is hard but I just cope we all do.
I took two days off…well kind of. In those two days everything I did in the 3 days and 2 nights I was there non stop was lost….UGH!! Kourts G/J fell out 3 in and the J is snaked through her small bowel. The ballon that holds it in got a hole in it and it deflated. This happens this is something I cant control. In those two days kourt started retching …Feeds? I really just did not think so, then she started shaking again and heartrate was high. OKAY? I started asking what changes had been made if any, Yes fent is being weened but replaced with methadone, that she has done before so I knew that was not it. I start going through everything and say well, they started back up her celexa thats what caused it last time. Only to be told no they held it for the past two days because of her G/J tube …..UGH!!!…you can hold that med it causes withdraw. I made them give it right then and there. They kept asking kourt what was wrong was there pain? Nasuea? She kept saying “I just dont feel good” I hate feeling helpless. It makes me crazy there is a reason Kourt gets this way, she has so much going on that it is all consuming but I know her body and her meds. Until she is even more stable I just cant leave. Not even Mark can keep up, its strange my brain is just always working thinking figuring things out. I have had a headache for about a month and now I have a full blown sinus infection…again…I cant keep it away this time with nasel washes and OTC meds I need ABX. I have no insurance since Kourt max out our plan. So Minute clinic tomorrow there goes 100 I dont have for meds and visit…sigh… I have to be well, I have to keep going…..Spending the day and nights at the hospital with no break always sends me over the edge. Keeping on!!
Kourt is almost a month out from transplant. It is so hard to remember the past few weeks. I have lost all account of time. We are trying to get back to the normal routine of me home on weekends but due to carmegeden I will not be heading home ( 405&101) in LA closed all weekend. Kourt is doing so much better. I spent two days and nights at the hospital non stop so I could watch everything that was going on. Kourt was in so much pain all weekend. Sunday was so much better, I did to shower and stuff some food in my mouth but that is it. Mark went back home to finish things up for closing the store and pay some bills that we could not pay online. Family and friends are helping the big kids and Mark get through this month in SD. Not a small feat, Thank you to the neighbors who brought food and meals some people just left things by the font door. Greateful we found someone to rent Kourts room to help pay the bills, you do what you have to. Thank you! Stephnie, Kerrie, Bonnie, patty ,Chantal,Lora, Rachel,Serena,Connie,Jeanne,Allison,Ranee, All TX moms, everyone who has just pitched in and done something for us in the last month. I am sure I forgot someone? Sorry,I dont even know what day of the week it is. The only way I can discribe what its like is? Think of any of the TV shows that have a trauma secene in it…..Now stand in the middle for a month for 24/7. I think pictures are the best way to show what these amazing kids go through…they are amazing. Kourt is losing her hair again some of the anti rejection drugs are also used in chemo. She wants to dye her hair blue and green this time. good news is her kidneys seem to be kicking back in good thing since her dialysis cath has clotted off, using TPA to try to fix it. Kourt did come out of the OR unable to be closed and the defect of her belly is to big to use a would vac and to delicate right now. Yes her belly is still very open. They will need to do skin grafts and reconstruction. Kourt has gotten so chubby in the last year, I kept telling them they were putting to much weight on her but they wanted “reserves” Well now she has so much fat the ostomy is almost flush to her skin. I knew when she started getting foobs (fat boobs) they were giving her to many calories. Good thing is diet is under medical control and the extra calories did help they just overshot it by 10lbs they put 20lbs on her in a year….CRAZY! Kourt did come out of the OR with a chest tube to much fluid on her right lung. They did pull her NG tube today (one in her nose) decreased her ABX . She is still on alot of drips but she is talking!! She told Dr F to go away that the fellow already looked at her belly and he needed to go ask him. Also she cried and then told him that she did not get presents on her birthday…..Dr F went away ….Kourt “worked” him because I herd all about it from him, I had gone to take a shower. I told him “really? you think she didnt get presents? You have been played by a 8yr old” He also did not look at her belly because she told him “you always poke and hurt me”…..OH my !! Now she will always work him, he has caved to the kourt-a-tude….He is in for it now!! Today she told the dialysis nurses to GET OUT!! she hated her and NEVER come back….They are very annoying and she said what I was thinking, but she needs to not say “hate” its not a nice word find a different one. Everything else I was okay with, she has to let it out. She LOVES her other nurses so ….Dialysis nurses get picked on. On the floor its the poor care Partners. Time to tame the beast but I am so happy to see her fight and hear her spunk. Today I just giggled it was a joy to see that ……KOURTS BACK!!!
Thank you everyone for your support and caring so much for kourt and the rest of my family. I can not even express how hard this month has been. Yes, we did this a year ago, it should be eaiser? After spending the entire year in the hospital already exhausted then going into a transplant its just exhaustion on top of exhaustion …..June 15 was the best day of my life and the worst. I remember jumpping up and down that they had found organs and then 12 hours later I was a sobbing mess and puking because I was told kourt was dying on the table in the OR. I will share that she was down for 5min and they put 30 units of blood into her basicly all her blood was gone they were pumping it in as fast as it was coming out. she had two? epi bouls to start her heart and keep her going. I was told they were doing everything medicaly pos and that she was very unstable and that they did not know if they could stop the bleeding. I was told they would call me in a hour with a update. At that moment, I thought not about myself but about the other kids Ty, Kacee, and Kamryn. I thought about how kourt must feel in the OR alone and complaining the table was uncomfortable . I should have given her more hugs and kisses when she went in. No ….She could not die!! I said, “I will see you when you wake up” I never said bye. The most comfort at that time was that her Uncle Roger and Nurse Sue were angles watching over her also the two friends we had with mark and I and the other TX moms who were there who have sat waiting just like me. Veronica ,Vicktor’s mom sent me a text that said” Kourt will be fine God is watching over her.” That at the moment gave me peace it was the first thing that someone had said to me that made things okay. I am spirtitual and I do beleive, just not in church even though I grew up in one. I chose to and teach my children to worship in their own way. They have the foundation its for all of us to find what is right for us. I do not remember some of the time she was in the OR and I do not remember some of the day right after the Transplant. I went into robot mode, just doing what needed to be done, making sure all the other kids were okay and making choices for kourt. Kourt is on Dialysis due to massive blood loss, she is on high doeses of fentnal,dalauidid, kedimine, she is on pressers dopimine narcipine she has 20 pumps . Yesterday after the “final” lets close her as much as we can surgery, she came out with a new hole. They had to place a chest tube because of a fluid filled lung . She was in so much pain and came out the OR into the PICU yelling “someone give me something” , “I need some pain meds” I really thought she would end up intubated again but she , dodged the intubation like a fighter…They have found a combo of meds today that will sedate her and keep the pain to a min. Mark left till tuesday he really needs to get things in order and try to scrape together what we need for the month and spend time with the other kids. Three /four years ago ? We could spend money and not worry how it was spent. Now we chose what bills to pay and not to pay. Its interesting, I dont feel sorry for us its more of a ?? Challenge..yeah thats the word and I am always up for that. In a way I am releived I dont have to worry about losing anything there is nothing left. The house is all we have and thats all we need and the kids . They are happy , I am happy! Last night Kacee who will be a cheerleader in HS next year called me to take about the cheers. We were laughing because I did some of the same cheers she is learning. It was a short long distance moment but a good one. I really am so glad that I gave the kids the choice of staying in SD or moving to LA. They are thriving in spite of all the changes and worries that this chapter in our lives has brought. While we have still a long road to home, the is now a path and we will do it together with style and grace and always to the fullest.
kourt was going to be closed today her belly still open Gortex is covering her gift of life. Those amazing new organs that are giving her life. while this has had huge bumps in the road , we cheer at the sight of anything coming from her ostomy, when she shews me out of the way of the view from her TV, when she postest dressing changes or “fakes” sleep when the teacher stops by. I know My girl is there she is getting better. There is a time in the near future where we will walk out that door. She has many hurdles to overcome but I know she will do it , at her pace and in her fashion. As her 9th Brirthday approches I have to remind myself that she cam in as a 7 year old and leaving as a 9 year old. My goal home by Halloween its her favorite holiday. Kourt loves her costumes.
what is a promise? I promised not to Blog about something until I went to source to resolve the issue.
I made a promise that I would not blog, but ironiclly I want to blog about a promise that was made to me about the very thing I want to Blog about.
What are promises if only certain people abide by them? A threat? Interesting…..
Today my goal is to make it through today,adovcate for kourt. This will be the only post for a while. The days nights and everyday life is just to hard to post and run kourts krew right now. The need to keep kourt strong and keep going and give everything to my other kids has taken every ounce of me. One mom, lots of places to be. Time to break before I do.
kourt had a really rough day. lots of pain. She had fun and made the best of it,the report from Mark was it was a very rough day.
Come on ORGANS!! We need you
Well we have a full house of Superheros. They have been playing with each other all week in each others rooms. They kick the parents out and they just are Kids playing. Today Kourt was and Angel and Jesus played Wii , and pirates , Peter Pan, The playrrom may not have been open but it was on in room 41 today.
Kourt has been complaining about back pain since monday with walking and has had some bleeding when walking. She does not walk a whole lot but its getting less and less because of the bleeding. She strated bleeding a lot more today then she had been the past two days. Not as much as she bled a week ago with me. She is stable and they are watching her numbers. I am hoping that may brings fresh flowers and new organs.
I am really sorry the everyone has to be in the hospital but so greatful for the moms and dads and just the amazing kids they have raised they are all so much fun with larger then life personality all of them are a the same!! Not one shy one in the bunch and so smart …they tell you what their meds are and when they need them.
AMAZING Simply AMAZING!!