Annika's Dance

A journey into our life with cystic fibrosis. Come dance with us!

Friday, September 28, 2012

New port, new concerns

Annika was admitted on the 24th, and had her IV port put in. She woke from the surgery in a lot of pain. We had to give her morphine to get it under control. Once she slept, and we kept topping her up on tylenol and advil, we managed to keep the pain under control. While we where in London, we got a lot of answers. We found up what was holding up funding for G-tube and supplies. We learned how to do PEP more efficiently, we changed enzymes, and tried some new supplements. We also did a kidney function test, and got our results for our sputum turned in a week ago. Annika is culturing  pseudomonas. This is not a good thing to culture with CF. We are aggressively treating it with antibiotics , both orally and inhaled. It is possible that we may have to do IV as well. This bug would totally explain why her cough has repetitively been returning. She is not contagious to anyone, except those with cf......which is me. My doctor is going to monitor me closely also. Everyone always wonders why having 2 people in the same house with this disease is such a big deal. Well cf people are very giving to each other, we like to share germs. This will not stop me from being the mother I have always been. I will continue to hug her and love her, and care for her. But like in the past we will have to be careful not to share utensils, glasses, etc. I will not let this disease take away love from my daughter! EVER. It is an issue we will have to live with. We will always share bugs, because when Annika is sick, she wants her mom. I will not deny that. I will not take that from her, being infected is a chance I will take for my daughter.
Now that we are home our physio has been bumped up to 2-3 half hour treatments, 2 inhaled Tobi treatments, extra Ventolin, and hyper tonic saline treatments. She has to take it easy for 2 weeks in physical activity to prevent the port for being jarred. David and I will do our best to kept treatment on a schedule. All the while letting her be a normal kid. I have had people ask me, why don't you work. Lets see between both Annika's and my cf, and hospital admissions, and physio, clinics, and oh yeah my other child and husband......I can barely function now, and a job on top of that? Really? I stopped attending births, which I miss desperately, but realize it is just not possible. I truly need to focus on my family and health. It does break my heart to be out of the birth scene though.
Some days it feels like our whole life revolves around cystic fibrosis. So much has been effected by it. Family, friends, marriage, health.......time? Some days I just want to throw the towel in, but than that little chipmunk laugh gives me what I need to get pissed at this disease and fight it tooth and nail till the end. This weekend is going to be a long one for sure. I have a head cold, along with my hubby. Parker is going away to Cub camp, and Annika is recovering. Hopefully her fever goes away, and her cough dies down for Monday and school or I fear she will be admitted for IV drugs. Time will tell. I promise to keep you posted on changes. Much love from a cf mom still hanging out in her pj's at 2:30 in the afternoon!

Tuesday, September 18, 2012

Admission to London's Children Hospital

Next weekend will be insane. Friday is the first PA day of the year, and that being said it will be the official start of the weekend. Saturday , Annika has dance in the morning and then we will be joining my brother and sister in law for apple picking at Wagner's. Sunday we will start our week by supporting my cousin and his fiance at The Kidney Foundation , to walk in support for his soon to be step daughter Breanna. She is a young lady who is on the transplant list. Too young to have to deal with transplant already. Sunday night we have our little niece Joelle's fourth birthday. Boy did those 4 years go by really fast. CRAZY! Sunday night, my sister in law is joining me for a long ride to London with Annika to the Children's Hospital. We will stay in Ronald MacDonald House on Sunday night. Monday morning the madness starts.Annika will be admitted for a study on her kidneys . She will have to do nuclear medicine, IVs and some new meds. While we are there over the next few days we will be trying new supplements, enzymes, and will be having a IV port surgically placed. Not sure what we are going to do about this cough she has right now, I am sure they will be giving her some meds via IV while we are there. We will see.
I have struggled with this placement of her IV port. She had one placed 5 years ago, and it lasted over 2 years before she developed a blood infection and it had to be removed. Her last admission we had to stay in hospital for IV meds because after 4 attempts, all picc line insertions failed, her veins collapsed, and would not allow placement. So my biggest fear is another blood infection. When you have a picc line or IV and it gets infected, you pull it and voila, the infection clears up. With an IV port, the port has to be surgically removed.This is my biggest fear. Annika has had thrombosis with her last picc line, and she had a blood infection also. She got really sick. It was a really scary time for us. This is my biggest fear with this IV port. I know I have to put this in God's hands, but nevertheless, I am nervous.
Every month with an IV port, a CCAC nurse will have to come in to our home to do a Heparin flush of the port to keep it functional. My child will be poked at least once a month while she has this, and like a child with diabetes, she will become accustom to it, just like physio and breathing treatments are second nature to her. It still frustrates the hell out of me. It still makes me angry. It still makes me envious of all the parents I know who can just make plans with no thought of medications,and treatments. It is not fair for Annika. It is not fair for Parker. Her bother who has to grow up seeing his sister or mom sick all the time. IT IS NOT FAIR! It is not fair to David, some days he has to be father, mother, friend, and healer! IT IS NOT FAIR!. It is not fair that I can't be the friend I should be. I can't be the wife or mother I should be! I can't be the daughter or sister I should be! It is not fair that Annika might potentially have to feel these frustrations herself in the future! I hate the thought of another admission. I hate the idea of my future cf clinic and surgeon consult in October. You  know I just want to be a normal, boring, everyday housewife and mom! I want my biggest concern to be what I am going to make for dinner, and helping my kids ride a bike. I want to hang out with my friends and help them when they need it. I don't want to be in a one sided friendship.....them giving and me taking, taking taking. This is not the life I envisioned when I said I Do. This was not what I dreamed of growing up. I am freaking 40, and frustrated as all hell. I want my son to love school. I want my daughter to never experience another hospital stay, I want my body to cooperate! GRRRRRRRRRRRRRR! I want so much that just comes natural to others. I see people not take care of their bodies by smoking, and drinking, drugs or poor diet. I see them laugh off what they can do tomorrow. I see parents not hug their children, or play with them. I see strangers caring for their children, just so they can still have their social life( we aren't talking about date night, or weekends away) You know the type I am talking about. I personally know people who don't tuck their kids in at night, and scream at them for missing a goal. REALLY? All I want is my kids to get a good education, fall in love, choose a career they LOVE, and maybe if I am really lucky, a grand kid or two. I would love nothing more than to see my daughter marry( if she chooses) and have a child ( if she chooses) Every dance recital I watch , I cry tears of joy, when there are so many parents that just flippantly say " I will catch the next one!" So UNFAIR! I know this isn't a punishment, I don't believe that stupid saying God Only Gives You What You Can Handle! Bull crap! God doesn't punish his children with pain, suffering, and sickness. This isn't God giving me what I can handle! What God does do , He provides me with the ability to handle what is given to me, he doesn't GIVE me the sorrow. He surrounds me with family, and friends ( that at times I am sure I don't deserve) He surrounds me with those who believe. He blesses me with wonderful, loving children. He has given us gifts to deal with this disease. He has given us love. He has given me modern technology, so that I may vent my frustrations to the cyber world. So that I may write and release. Digital therapy  . I know that he has a plan for us all. I know I have NO say in that plan. I know it doesn't help to feel jealousy, anger, or dismay. I know all these things as his child are wrong, yet I still experience these feelings this week more than ever.

Thursday, August 23, 2012

A week post Olympics.....what a ride

This past two weeks have been a whirl wind! The magic that we experienced on our trip abroad is indescribable . I don't even know the words to write to allow you to understand the love we felt . As a family, we totally understand the gift we were given from Proctor and Gamble. It was such an honour to represent Canada at the 2012 Olympics. We wore our colours proudly, and never hesitated replying to questions about our great country we live in. We experienced so much in the time we were gone. Great Britain was so wonderful. the energy, the people, the sights, the food, and the drink. The excitement of the Olympics was everywhere. It was normal to see athletes walk among the people displaying their countries colours proudly, while sporting their athlete badges proudly around their neck. Why wouldn't they wear their colours and ID proudly. They represent their sport for their country, all the while knowing that they may not bring a medal back for their country. I looked at them with awe. I thought here walks someones daughter/son, brother/sister, husband/wife, mother/father. The hope and awe in their eyes at the same attractions we werein awe of, all the time trying not to distract themselves from their main goal, that medal that all our companies promote the winning of, that all the newspapers write about and all the media interviews focus on. What I would love to see is follow up commercials, interviews and newspaper stories about those athletes. About the athletes who managed to have fate on their side and brought home medals, but mostly the athletes that had a medal slip through their hands. We need to remind those athletes all over the world, that we are proud and honoured by their performance. That we understand their disappointment, that we grieve their lost, but ultimately how utterly proud we are of them as a nation. They are our brothers/sisters, mother/fathers,husbands/wives, and daughters/sons. They can not disappoint us, they can not fail. Failure is a part of life, it humbles us. Failure is not what these athletes may experience, it is a twist of fate. A bubble in their timeline, and they need to be reminded that we stand in awe as a nation at their ability just to get this far. Their dedication, and their time and life they sacrificed for our country. WE ARE PROUD OF YOU !
All these "hopefuls" walked the same pavement as my family, they saw the sights just like us. They bleed just like us. They have ups and downs just like us. While Annika and I make sacrifices for our health and body, they make sacrifices for a nation.
We were so honoured to be able to witness this journey for so many. We got to experience the highs and the lows, like so many people glued to their television over the weeks. We just got to experience in person. The buzz, the laughter, the crowds, the host country. What an amazing memory , that I know will never be topped by another.
These coming few weeks I will be going through all the photos of our trip, and I am sure I will be rushed with emotions.I will remember the laughter and the feeling of that time and place. I will remember the London Eye, The Tower of London, The London Aquarium, The Tower Bridge proudly displaying the Olympic rings. I will remember the dinner with good friends, and the walk along the South Bank. All the faces in wax at Madam Tassuad's. The sights and sounds of Great Britain , our mother country. I will remember the feeling I felt about taking a picture with my daughter at Piccadilly Circus, a place my grandmother took a candid snapshot 30 years ago. It felt great to bridge the generation gap. I felt at home in the UK and would love to go back again!
Our friend Herve made our trip to Paris unforgettable! We crammed 5 days of places into two and couldn't have done it without him. He guided us on and off the Metro. He translated for us, in places we surely would have gotten lost. Herve bonded with our crazy kids, even though he didn't have children and was raised an only child. It had to be a culture shock for him. He showed us the beauty of his city. I respect the French for preserving their history instead of knocking it down for a new building. Paris was architecturally amazing. I got to kiss my husband on the top of the Eiffel Tower while our daughter took pictures and grinned like a fool. We got to see the beauty of the Mona Lisa. The towers of Notre Dame where gorgeous, and the Louvre was amazing.The history behind the Arc is amazing. The Paris Aquarium did not disappoint us, and the food was wonderful. Paris will always hold memories for us.
This trip allowed us to experience sights and sounds of countries we could only dream of. Thank you to all those involved in this journey, thank you for this honour.Thank you Lord.

Thursday, July 19, 2012

Look out England , here we come

Things have been so crazy since Annika's last admission and her 7 day stay at Club Met. After recovering from my infection, things started on the highway of healing.I think our healing was quicker because we had something to look forward to. there was a silver lining to our suffering. Not only did we get to meet an amazing fighter, Mary Spencer, but we got to plan our trip to London and Paris. Over the last few weeks , as a family we have really been focusing on staying well, getting our 1st home in Harrow ready for sale( which has proven more stressful then needed!)and finalizing our itinerary for our trip. The kids started a countdown. It is officially only 20 days until we board our flight to cross the big pond. Look out UK, the Hasson's are coming. We are looking so forward to so many things. The Olympics, the country, the people, the food, the fun........the hotel....lol. It seems so far away, yet so close. My emotions are all over the place. I pray we all stay healthy till then!

Thursday, June 14, 2012

Here I ponder

At 6:20AM this morning I was waking up dogs, kids and husband, preparing them for the day. Little did I know at the time that it clearly was not the usual 7:30AM, and my body wasn't in it to win it.....lol. What made me slow down was I caught a glimpse of the clock on the stove. 6:45AM, I remember thinking " Did the electricity go out last night?" So funny how your brain jumps to the craziest explanations, not the most normal one. I was up over an hour early this morning. I woke up full of aches and pains, I just couldn't sleep anymore. I was hacking up a lung, and my backside was throbbing. Let me explain. Every time I go on Cipro , my body puts up a fight. For the first two days I have aches and pains, vomiting, and my kidneys throb. The first time I experienced this, I thought I was dying. No seriously, I had the shakes, I hurt so bad, and the nausea was the worse. I remember thinking that I was allergic to Cipro. Come to find out from several fellow cysters that this can be a normal reaction. Either you do well on it, or your body fights the healing process. Of course, you all know I am a fighter....lol. So Cipro and me do not agree, ever! But because of my years of infections, my body only has so many drugs that it is not resistant to. I managed to get the clothes ready for the kids, lunches packed, including hot chicken noodle soup, and my morning dose of drugs, along with gravol so they stay in. I lay down again with my morning coffee, and vow to let David and the kids sleep in an extra 5 minutes to make up for the false run. I totally get why parents get up at least 1/2 hour before their families do......it is so peaceful. So liberating, so...............who the heck am I fooling, I would take the extra 1/2 hr sleep any day......lol. I am awake and thinking of my throbbing backside( which I will admit is my most hateful pain besides bowel spasms. It is a pain that is deep inside your back. Heat doesn't help, cool irritates it, you wait for the Motrin to kick in, all the while swallow the hateful spit that sneaks up your throat , threatening a run to the toilet. ) I can handle vomiting, after all I am basically a pro at it. I make vomiting an art. Over the years of bowel blockages I pretty much mastered it. I could vomit, get washed up and flush before anyone even knew what happened. My husband used to use my butt as a dart board for almost 1/2 year when gravol pills and suppositories didn't do the trick. At one time I was on Stemital( anti nausant for cancer patients ) and injectable gravol. Anyone who has had gravol , know that it stings like a son of a pup. There is no easy way to inject it, believe me, we have tried every way....lol . Did you know it can take the body over 2 weeks to totally absorb all gravol IM( injectable) so literally my arse looked like the sand dunes of the Sahara......lol. I can laugh now, but at the time I was ready to take the gravol needle and stab it into my hubbies temple. Don't get me wrong, I love my husband, but that stupid little grin he used to have every time he had that needle in his hand was just wrong.
So I have had many hospitalizations as both a patient and as a patients mother. Both scenarios suck. Being sick and in the hospital away from your family bites the biscuit. But being generally healthy and in the hospital watching your child suffer is the worse! No words describes what you feel. But here I go: Defeat, guilt, hatred, anguish, sympathy,patience, impatience ,hurt, compassion ,frustration ,trapped, relief,concern ,oh and the list goes on and on. You feel so many things both good and bad. You hate some of the feelings you have, and embrace some of the others.
I often write about the good and bad of cf. Well the bad , most would think would be very apparent, but what most don't know is the worst thing about cf is the guilt! The guilt of not being able to heal your child. The guilt of passing on this disease, the guilt of not being able to protect them from their hurt, the guilt of being so strict with treatments, the guilt of your child not having a normal childhood, the guilt of more needles, the guilt of so much. The guilt at times can destroy who you are as a person. It can eat you up.
I often have guilt feelings when I am sick. It is not fair that my children suffer because of my illness. It is not fair that my husband has to be both mom and dad at times. It is not fair that my family suffers from anything to do with cf. The guilt of it all can eat me up. It bubbles, and froths, and breaks your heart. I totally understand when people say guilt is a horrible thing put forth from the devil. It has a way of weaving itself into fathoms of your life. I struggle everyday with the guilt. I have to remind myself that I am doing the best I can. I need help, I need support, my family needs a break. I have to remind myself that I have no control over my illness, but I do have control over how I react to it. There are days I sit and sulk! People ask me "How do you do it?" Really.....really? They are my kids and family, I do it because I have too! DO I WANT TO? NO,NO,NO,NO,NO!!!! I hate, I mean emotionally and physically hate that I have to do it! I HATE IT! I hate everything about cystic fibrosis! I HATE THIS DISEASE! I hate that last night my son came to me with tears in his eyes and said he was so afraid of losing me? Does that seem fair? Does that seem right? My 9 year old son is afraid of growing up without his mom. That is not fair, and I hate it!My daughter seems to embrace my sickness. I think because she has a first person understanding of it. My son and husband really don't get it sometimes. I wonder sometimes if it is the male gene. There are times when I am puking and been in bed all day and my husband will ask, what's for dinner. Or will say I am going uptown, and he won't be back for hours. I know it is his way of feeling normal, but it truly sucks. I want to be cared for, I want to be nurtured, I want to have soup served to me in bed. The same way I serve them when they are sick. My husband and son expect me to be superwoman, and I see the disappointment in their eyes when I can't. I have found myself blowing up at them stating " Let me wipe the vomit off my cheek, and make you dinner?" I find myself yelling at my husband , reminding him how selfish he can be. I find myself being resentful to him for wanting a healthy wife, because I am truly not sure if I will ever be able to give that to him. I hate that my son often mimics his demands, because he is just doing what he sees. Is it fair to be mad at my husband? Is it too much to ask for him to take care of the kids without a eye roll? Now it sounds like I am making him out to be a ass, but I have to remind myself that he truly didn't sign up for this. He married a energetic, vivacious women. A woman that let nothing stop her. He married a woman you never gave up, and who was active and happy. He married a woman who could multi task. Now he has half that woman. Dave has just lost his job two weeks ago, and the stress of things is crazy. We are putting our house on Secord up for sale, he is looking for a job, the stress of not providing an income is killing him. Every time the bank account goes into overdraft, I see his hope dwindle away.Every time we pay over $50for a drug for me, I see the frustration in his eyes. Remarking to me how expensive a drug is, is like saying" How dare you get sick, can\t you just stay healthy?"  I see him struggle with so many things. It is not fair that he can't be a regular husband and father . He should be able to work and enjoy his family. My fear is often losing him to a heart attack, and then we will be alone. I know a part of him wants to run away......far far away. Any person would want to run. Who wants a sick kid and wife? I think it is his guilt that keeps him around sometimes, but not without its price. I think our love struggles so much with this disease. I think our marriage just floats at times. I look at other marriages at times and feel envy! I often think" You're getting a divorce, why ? Because you can't agree on money?" Really it seem so trivial. Try throwing in sickness, pain and medial bills in there and see how things work for you. I can't remember the last time Dave and I went away together, or went on a date night. I can't remember the last time we got to work on our marriage. I honestly can't remember when were last a couple. It is not fair that my husband has to be everything to everyone. It is not fair! It is not fair that my children have to care for me at times. It is not fair! It is not fair that we are cheated of so many things. I am cheated of hearing my child cough, and not thinking the worse! We are cheated of being spontaneous, and just packing things up and going somewhere on a whim. We are cheated of normal friendships. Our friends have to be patient and understanding, and know that they could take the back burner at a moments notice. We are cheated of a regular family life. You know the type when you can just pop some popcorn and watch a movie together? Nope , not us. Popcorn means enzymes. Popcorn means thought, popcorn means you may be able to take a certain medication on a full stomach, or is it an empty stomach? Everything in our life revolves around cystic fibrosis. EVERYTHING.
Simple things that people take for granted are affected by this disease. They really should put a psych warning on cf, because this disease affects the brain and your way of thinking so much.
The truth is I love my husband. I love that he can take both kids on day trip. I love the fact that he will care for them without fear. I love that he tries his best to substitute for me when I am ill. Even though the kids give him hell and often say " Mommy doesn't do it like that" It has to be defeating to him when he hears that. I love that he hasn't left us. I love that he has taken responsibility for his kids. I hate that I feel sometimes that isn't enough. I hate that when Annika gets sick he drops everything, but when I get sick he could care less. I hate that, I hate that!
I know that our marriage will struggle, and have its ups and downs. I know that we go through more than 90% of marriages. I know that the love we had when we said " I DO" will get us through. Who knows maybe one day we will renew our vows. Wouldn't that be a great adventure. Wouldn't it be nice to know he said I do , knowing EVERYTHING, sickness and in health till death do us part. I think that would be the greatest gift he could give me.....lol.
It is totally unfair to the spouse to have to care for them in sickness. Some of your reading this may think. He is your husband, he said the words in his vows. I will honestly say no one really considers those vows when they say them. NO ONE! He is only human, and has the right to feel cheated. I feel cheated! Tomorrow is another day, and another struggle. I am blessed to have medication, I am blessed to have support. I am blessed to have faith. I know it could always be worse! I know I should be totally thankful for everything I have. I know all this. I know I should not have envy, or jealousy. I am not proud of those feelings. I know I should just..........................................
Tomorrow is a new day, another day of healing physically and emotionally.