Back to "normal

"Well I am home and settled in. The kids are full of energy and I am not. Gosh I wish I had 1/10th of what they have. Oh how I could clean the house and get all my chores done....lol.

I missed my family so much. This weekend we are decorating my parents Christmas tree and having a family dinner with my brother's family. It should be fun!

Next week we are going to take the kids to chop down our first"real"Christmas tree. The others have always been fake ones in the past. I just want the kids to experience a real tree for once.

This should be a fun date because hopefully Dave and I will come back refreshed from or night away. We plan to go states side to finish our Christmas shopping. It is nice to have American be less than Canadian for once in my lifetime...lol. Now I know why the Americans come our way every year.

Just before I headed in to the hospital for my last "spa"treatment, we had manage to rake and bag leaves, but we had some fun in between. Hugs to everyone!

Can you say "Go home?"

The cyst situation is under control. The bowel obstruction is no longer an issue, and the best thing is the pain is totally gone!
I feel tired, but not weak, which for a change is so nice when leaving a hospital. Dave will be picking me up around dinner time, and I can go home to a nicely cleaned house ( the housekeeper was there today) and spend some time with just my husband.
The kids are staying overnight at Dennis and Angie's , which is great. I can get settled in at my own pace, not at my kids.
So off I go to my home. Back to the old grind and loving it. Lots of paperwork to catch up on this week, but looking forward to it! I have several clients booked starting in two weeks, so that gives me time to get prepared.
My friends and family have been great, thank you so much for your prayers and your support.
I can't wait to get home. I promise to take it easy this coming week. I will be seeing a naturopathic doctor ASAP to get the bowels and immune system up to date.
Christmas here I come.

Mistreated and I am not going to take it!

I have to start this off by stating I have been participating in a ongoing battle with my "Unattached" assigned doctor. I won't mention her name. She has actually stopped my pain meds, with the added reply "I will book a pshyc appointment for you"I asked her if she thought my pain was in my head. Her reply Ï think you think you feel your pain"I lost it. I called patient advocacy. Too make a long story short, we are working things out. But still no pain meds because the latest CT scan (which I demanded) shows a small obstruction in my bowel, so since pain killers constipate you, no drugs for me. Also in addition to that we found a cyst on my ovary, explaining why I have so much pain. I said to the doctor today when I got these results"So I guess my pain is legate, huh?"She replied yes, but until the obstruction is cleared, no drugs for me.
I am so tired of doctors making me feel like a five year old. Because they have their licence it automatically gives them the right to treat you like an idiot. Whatever.
I have dealt with a lot of doctors in my time and I can count on one hand how many where nice to me and actually listened.
This doctor prescribed a sleeping pill for me, knowing I have WPW( Wolf Parkins White) a heart condition, and on the manufactures page it states do no prescribe to those with heart conditions, this medicine can cause tachycardia and arrhythmia. My heart was beating all over the place this morning. To say the least she stopped the pill.
I can't wait to get out of here! I want to go see my naturopathic doctor and get my immune system boosted. Life in the hospital sucks.
Thanks to my parents and mother in law for helping with the kids. My parents aren't going to know how to deal with the quiet and spare time once I am out.
I also want to thank all my friends for their phone calls, emails, and any one who is planning to drop things off at my parents. You can't imagine how much it helps.
Most of all I want to thank my husband, who has been my knight in shining armor. I know he is trying to juggle work, kids, house and everything else and keep his sanity about his wife being in the hospital again.
I couldn't manage staying in this hell hole without all the help of everyone. Thank you just doesn't seem enough.
I hope to get out of here soon, but I am not going to rush out. I promised my family that I won't leave till I am well.
Right now still in pain, still full of poop, and waiting on OBGYN consult, a consult from ( a doctor who checks your kidneys?) and a few other tests. So I will probably be here for the weekend, but who knows. Still on clear fluid diet, which sucks!
Add our family to your prayers.
Parker is doing great in school and just got over a bug. Annika is sassy but running a high fever the last two days, so it kills me to be in here.
Pray that all is well. Give my parents and husband the strength to cope and pray to keep all healthy.
God Bless everyone, till I can rant and rave again. My sanity is stable, I think....lol!

I moved to room 6 on the 6th floor so 8106 bed B. TTYL
Hugs, Kimberly

At spa Met again. Guess I didn't get enough the last time!

Well I woke up Tuesday November 13th with upper belly pains. I tried to pleasantly ignore them. I swallowed extra peglyte, even though I had been having bowel movements regularly. The hot water bottle came out of hiding, and I went to an all fluid diet just as a precaution. On Wednesday the 14th, I could no longer ignore the pain. I was crying openly in front of my kids, so I knew it was time to go in to the spa. My mother came and got the kids and made all appropriate phone calls, including one to David who is hunting 8 hrs away at the cabin. My good friend Nicky Syed drove me in, with a few threats of using her virgin"On Star" ambulace button.
Her son Daniel was riding in the backseat, what a doll. He happened to be heading into Met for an appoinment with a new ped doctor. So the heavens were working things out for me. I was taken into ER after a 1hr and 15 minute wait ( which is really good for this hospital) and with Nicky my "cystic fibrosis"doula.....she was acting like a determined , caring friend. She got the doctor to read my chart faster so I can get the much needed pain meds. I call her my cf doula because let me tell you I needed direction to get in control of my pain. So do you guys think I am in pain? It took 20 mg of Morphine, 200 of fentanyl and 100 mg of demerol to finally get ahead of the pain. Now I am on Gravol and Demoral by needle! Ouch , this floor doesn't give pain meds by IV, only injections. I have puked so much that my throat is raw! Iwill be seeing a GI doctor in the next 24 hours so hopefully we will get answers soon. I am in room 7, Bed A on the 6th floor of Met hospital. I am not in much spirits for visitors, but emails or phone calls are welcomed.
Once Dave gets home, he will take the kids, but for now my wonderful, amazing, caring parents are watching them. Some people will call or email me asking what can they do to help. Well make a few meals or cookies, anything really, and take it to my parents, or a gas card for the trips back and forth, or send me flowers....hehe just kidding on the last one.My parents live at 2249 Division Rd., N., in Kingsville. Their number is 519-733-3955.
I hate having the kids being taken care of my parents, but like my dad said "I wish we could do more kiddo! " Little do my parents know that they are the world to me and my family. They truly are amazing people. I pray that I can get better so when my mom plans her shoulder surgery, that I can be there to groom for her so she won't lose an income. We are still waiting for the variance to pass on the property so we can add on to the back house to fit our little family and to be only yards from my parents.We just had the new septic system put in , and now waiting for the final paperwork for the permit. We have one neighbour who is beeing a total idiot about us adding on , and is fighting us all the way to the variance meeting. Hopefully God see fit that everything runs smoothly.
To all my friend and relatives, especially my extended cf family. god Bless , stay health and put our family in your prayers, Please.

xoxoxo Kimberly

The Family Update-Hospital November 2007

Well Now that I am out of the hospital for a kidney infection, my strength is getting better, and I am cleaning like my old self again. I had to dress the kids in their costumes for Halloween at the hospital. How sad is that? I hat being in those places, especially when you get sent home to heal from one ailment, to be put back in the hospital for 36 hours I.V from catching the Norwalk bug that the hospital was closed down for. Wish me luck!

The road to recovery......

I am staying with my parents for a few days with the kids, i am incrediably weak, and on full fluids for 6 weeks, so since I pretty well been in bed for the last 3 weeks, so my energy level is nil. Today I went and got the kids from my sister in laws, you should have seen their faces.when they saw me. It was priceless. My husband had gone for the weekend for a motorcycle rally just to have a two day break , he has had the kids by himself for 5 weeks, so he needed the break(he had so help from relatives). He is home now, and studying for his trucking licence. I plan to make some calorie smoothies and keep my girlish figure, I lost 15 lbs in the hospital. I haven't weighed this little since before kids. I am very tender, I have this dang hose( my penis that hangs on the left....lol) hanging out of my stomach. It is healing up fast , Thank God. But it is still sore.The kids have hit it wrong twice today hugging me, and the dog was so excited to see me she jumped up on my stomach...something she never does. In 7 weeks I get my GI button and I will be trim and hopefully full of energy. The heat hit me today, I went swimming in our salt water pool(just my families)So between all the activity and no nap, I am spent. Bed early for me tonight. Continue to place me in your prayers, I still have a long road in front of me, but I appreciate all the emails. God Bless, Good night all. Stay healthy.

Going Home, finally.

I got the news today after a torterous ultrasound on my G tube. They pushed and pressed my poor raw belly looking for the abcess that once was there. It is gone. The drainage from my tube is normal healing discharge. My bowels are clear and I can go home tomorrow. I have the 12 noon train booked for home, and my brother has agreed to pick up my sorry butt at the Windsor train station. I have to be on a full fluid diet for 8 weeks. Should be great for my waistline, bad for my will power. I am sure I will cheat a few times. I have to let this tube( I call it my artifical penis) heal for 8 weeks until I get the tiny, not so noticable Gtbe button put in. Wish me well, and keep me in your prayers. I am both happy and scared to go home tomorrow. I will need help for the first two weeks I am sure, but I pray I heal fast.
Take care everyone, till next time. Stay healthy!

Good day, better week? We will see!

Today has started off well rested. I had a good sleep last night. I have eaten both breakfast and lunch, and kept it dowm. The GI site is hardly draining now, so this in itself is a bonus. Had blood drawn this morning, and she got the vein first time.
I know the doctors have plans for xray, ultrasound and adjustments of my tube planned for tomorrow. So if all goes as planned, when the tube is tightened it should stop leaking stomach fluids and "farting", ( I hate this, the hole in my stomach is literally farting the gas out of my stomach....it is so disgusting)the ultrasound will show if the absess is gone or not, and the xray will show the contents of my bowels. We need to start using the tube again, and once this is all done. I should be able to go home.
What does going home mean to me. Life! My husband David has been amazing. I have seen a side of him that I never expected to see. He had no choice but to be mom, dad and provider to the kids. Housework, responsibilities, all his. He was over loaded at first but seems to be adjusting very well. I AM SO PROUD of him! I love him.
I will get to see our kids. God only knows how hard this has been to be away from them. I can get back to work....life in general. I never thought I would here myself say this but I even look forward to doing laundry. I know I will regret putting that in print.See all my freinds and family that have been so supportive over the last 5 weeks in hospital. I will keep you posted on how tomorrow goes!

A Long day weekend, trapped in brick!

 
 
 
Well I finally got the GI tube settled in. For almost all of last week I don't remember anything,that was how much pain I was in due to the fact that I devloped an abcess and it became infected with staph.This pain was the worst pain I have ever been in . The pictures here only start the showing of the absess, the reddness around the site and the pus pooled at the site. I plan to talk more tomorrow, but I know some were worried becausethey hadn't heard from be in a while. I miss everyone and love you all. Prayer for me to healso I can go home to see me family. It has been over 1 month!

Evil vs good, is kindness just as hard to find in the real world?

Last night could be classified as a living night in hell. I have never lost control of my body like that before. I went through 5 pairs of underwear and three pajama outfits. I had the nurse change the sheets 3 times. That was in addition to the 2 times mom and I had changed them.
Earlier in the night mom and I went for a stroll outside to hunt for dinner and to get some fresh air. Well on the way back to the hospital I noticed that I probably pushed myself to far. When we got back to the hospital I had started the access to my GI tube with Peg Lyte, four litres of it.So we started eating soup and bubble tea. Well ,the dam broke and there was no way of holding it back. I stoped counting how many trips I had made to the bathroom. And worst yet how many trips I didn't make to the bathroom. I slept naked from the bottom down, thats why there are so many more clothes to wash, between all the wires and the extreme pain, I couldn't make it fast enough to the toilet. I felt so helpless.
I remember last night begging a nurse( gotta find out this witches name) for morphine by IV, because the pill wasn't doing anything fast enough.She continued to talk to me like a little child and reminded me about addiction, blah, blah, blah. I told her to be quiet ad that I am a 35 year old woman that is able to make informed decisions for myelf, and addiction was not an issue right now, get me the damm drugs. Funny how I always get a new nurse after one of these episodes with my temper. Those tempers usually come with a threat about calling the head of the nursing staff . I absolutely hate nurses that know how to read doctors orders, but throw a fit with the patients when it comes time to giving them the narcotics. This is to tiring, the battle between good nurse and bad nurse. Unfortunetly there are more bad than good in this hospital.
I hope things heal up soon so I can go home to enjoy my family.My stomac, gut hurts so very bad today I can hadly walk, so my plans are to rest.Sleep and after putting another 4 litres into my GI tube....pooping will be on thr criteria....lol
Let's hope today goes better,
Kimberly and a visiting momma Barb.

Why humans don't remember alien abductions!

Okay after my drug indused alien abduction/sugery, I have woke up to my boring hospital bed and rude nurse. Now I know why people dont remember álien abductions, becuase if its a fraction of what has been done to me since in this hospitalis done to them, then there would be so much pain involved, the pain is something know one NEEDS to remember. My anus feels like another appendage of my body. My stomach is going through spasms, and I have been throwing up. Now I don't have to explain how that feels, you can imagine. I am tired of nurses looking at me as if they want to say "suck it up kid". When I just asked my nurse to call the doctor to ask for IV pain killers, because I threw up the last pill. She looks at me as if I am talking in another language. It amazes me how stunned they look when you ask for something for nausea or pain. Almost like I asking them to do somethin nude. And if I have one more nurse walk by me and say, I am not your nurse, I will tell her, then go sit on a chair to relax. Next nurse is going to wake up with a stunned look after i smack them off their chair, Please pray for healing and my sanity.
So I am barely drinking, I am not eating, I am trying though ,believe me.
I am still not pooping , I am in so much pain, HELP PLEASE. Send flowers or drawings or pictures of beuatiful things to look at.lol!

Poked, Push, cut,blah,blah,blah....

The first picture shows an incrediably pale mom about to be attacked by the forgiegn galatic of Saturn....their tribe is call"spegetiistretchinose: they are very quick and very aggressive. The alpha mom of the human race was not quick enough to miss their traps.
The tribe than takes her into their jail and poses her infront of their committee and disguuises what will be done toher will in captiviaty.Their leader"the surgeon"" trys to comfort you and remind you that the are not maneaters, only money eaters, and an associate of mine called OHIP has been generous to give them all the green food in exchage for the ""spegetistretchinose""services to repair the injured alpha mom.
So now that she feels assured that she is safe in captivity, the alpha mom agrees to the surgicall suggestions.
Once the alpha mom is comfortable and sedated, she finally falls asleep to allow the surgeons install their "GI tube"" to allow the alpa mom to clear out her gut in the near future,all the alpa mom wants to do is poop.

The alpha mom ws suppored by her mom, the alpha leader mom of the Jarrold tribe, now her daughter married a wonderful alpha male in the Hasson tribe, so everyones standings changed, but for the best. My mom stayed over night in a cot bed, sleeping with one eye opened,worried for her aplha baby girl.

In the morning after a long,hard toss filed night,we both arised to ourselves.
The "surgeon"came in to check on us, looking closely at the wound she created,leaving the jail happy with herself and the things she prescriped.
After lots of pulling, pushing, and tons of questions /i am off to relax and try to eat without vomitting, because I don't want to insult the surgeons right now. Cheers
The alpha mom.

The big day, has it arrived?

I write from my early morning in bed. Last night was a terrible sleep. Between the discomfort of my bowel and worry, sleep evaded me last night, even with two sleeping pills I was wide awake to 5:15 AM this morning. I have been wordering lots of things. Will they do the procedure like stated. If so how much pain will I be in, will there be any complications. Will I go home next week. God I pray everything goes well. I hope the ng and GI tube goes in with no troubles. I pray my mom will be here in time to console me. I MISS her so much, she is my best friend. I miss my dad, even his bossy ways....I know he wants the best for me. My husband and kids, no questions asked. My friends, and my family. Sherry has been a great support (my brother's sister) along with my brother. Angie and Dennis have stepped up to the plate as always. Pray that today the surgeoon's hands are blessed, and everything goes really good. Hopefully I will be able to post soon. Lots of love to my support in cyberspace.
Kimberly

Pokinga new hole in me

Today has been an absolutely horrific day for the gammet of feelings.I wasn't feeling good from waking at 6 am. I went back to sleep after taking some break through pain medication. I slept right through breakfest, snacking on a bowel of cereal when I woke. Shortly after waking I started getting bad bowl cramps, which have lasted all day long. After finishing my"breakfast"I started throwing up. Thank God it was just Cheerios, I urned away lunch.

At one in the afternoon, Dr. Stephenson came in to tell me all the results were in from Hamilton and the were 99% sure I didn't have Hirshsprungs'Disease. They she proceeded to tell me they were going to send me home and get me to come back in three weeks, beacuse they need the bed. Not only did she give the guilt trip about needing the bed, she proceeded to remind me that there were 3 cf patients in the ER that are really having a rough time, and they really would appreciate the bed. Talk about making me feel guilty, but it didn't work. I talked to Dr. Durie when he admitted me and said if I am being admitted I am not going home without a cure, answer or a method of remedy to prevent my chronic constipation.So don't try to guilting me into going home. One thing I have discovered in my past hospital stays, do not go home if you don't feel well, it will only result in a repeat hospital stay. If all these tests are not showing anything, and I am still constipated after over 20 litres of Peg lte, and I am throwing up and my liver enzymes are three times higher than normal, do "we"really think it is time for my to "throw in the cards"and give up my bed....I DON"T THINK SO! Unless Durie walks in an says he can't do anything, and that he was 100% wrong in telling me he would be able to help, do not come and ask me to leave here again. Funny how when you call a doctor out , their team starts getting things done. I am scheduled for the GI tube tomorrow. The plan is to have the tube installed. To clear my gut out totally, get me on a total liquid diet to start in the hospital and to send me home on a total liquid diet for over three weeks. This will allow me to give myself peg lyte without throwing in up from the taste, and it will allow my colon to relax and shrink down in size. I will be sent home next week providing everything goes well. So add me to your prayers, along with the surgeon doing the procedure. Once my colon has shrunk down, I will come back up to T.O for more tests. But at least it is a plan of action, and I can get out of this bed and hug my kids again. Everyone, even perfect strangers are probably getting tired of me telling them how much I miss Parker and Annika. I miss everyone. I have attached some pictures of a GI tube, etc.

God Bless everyone. PRAY, PRAY , PRAY!

Naked Honour.

A while ago, back in May of 2006. I had decided to honour the birth of my children by getting a tattoo created to finalize their birth. This tattoo was created by my dad, Fred who was just diagnosed with cancer, and then tweaked by the tattoo artist at Mind's Eye, Brick was his name. The Japanese Fighting fish represents my bassy, fighting attitude in life and my religous belief as a Christian. There are two roses in the tattoo. The first is a white one which symbolizes hope and it is over my first born's name, Parker, my handsome son. The second rose is red with the number 65 over it. It was placed over my second born, Annika. She is my spitfire, my beautiful daughter. I have a million dollar family. A Million dollars worth of love. The 65 and the red rose represents how children say cystic fibrosis....they say it 65 roses. Since both my daughter and I have this disease, I though that this was very fitting. The colours orange and purple on the fish are my childrens favorite colours. So a small tattoo to some, but a huge meaning to me.
God Bless
Kimberly

How do I stay sane?

 

This is the photo that gets me through each day in this sterile, lonely hospital. I look at this picture of a fantastic family, and I remember what I am fighting for! I fight for my husband, and the love he has devoted to me over the past 14 years. I fight for the snuggle and squeezes my son demands of me when I am around, now going on 5 years strong, and for the evil-eyed large smiled hugs and hair pulling I get from our daughter when she thinks I am not paying enough attention to her. I miss everything good and bad, and can't wait to get home to feel it all again. They are trying to get a mid-line put in my arm(simialar to a picc line , but not as long....it doesn't go into your artery by your heart) they can do it in you room, I have the emla on freezing it as I type. My liver enzymes are 3 times higher then when admitted so this concerns them, and they are taking me off some meds. Also STILL waiting for the biosopy reports and the reports from the tests done in Hamilton. Will I , or won't I have a major bowel surgery??? Who knows. Please pray for my family and me, and for our sanity. Love to you all
Kimberly xoxoxo

My kids are staying at my mom and dad's for a few days , so Dave can come up and be with me. Annika is now off her IV treatment, and the port is totally healed. She looks great. She has been complaining about how it hurts when she goes pee, so she will see the Dr. on Thursday. Parker went fishing the other day with his dad, and caught some fish. My mom BBQ on up for him to eat. Supposably he kept me a peice to savour when I get home. I PRAY that is just a figure of speech or my house will smell pretty bad if it is in his bed like he told me tonight.....lol. The kids miss me alot, and that makes me feel both horrible( because no kid should have to have their mom in the hospital this much) and it makes me happy ( to know that no matter what I do or say, I am number one in their lives) I MISS THEM SO MUCH IT HURTS! My mom and dad where creative ( I sure it was pappa's doing) and sent me the attached photo, it made me day, heck my whole week. I thought I would share it with you all.Tomarrow I have to have a barium enema and xrays. Thursday we head over to Hamilton hospital for a motiality test with more things being shoved up my butt and things being drained out of my body. YUCK! They are looking for a few things but mostly want to rule ouy Hirshsprungs disease. So we will see, I am in the hospital at least another 4 days. If anyone is bored you can send me pictures or emails, I have my laptop now, and I check in at least twice a day, in between naps from my drugs.....ahhh at least the pain is under control. I will talk to you all soon, Hugs and XXXXX's.

What,Who,Where, and When???

Well another morning I wake throwing off my covers to a screaming child....only to realize I am dreaming about my kids having a nightmare, and I wake up rushing to rescue them from whatever creature that has snuck into their rooms.....but then I remember I am in my own nightmare. Since June 1st I have been calling St. Mike's home. I MISS MY KIDS! I miss their little kisses and hugs, I have to be happy to catching them over the phone line,, and listening to the grunts of a pretend phone hug. God it hurts me to be away from them. I will be the first to admit I am in no condition to care for them right now. I am on the 14th container of a 4 LITRE jug of Peg lyte. I cleared out for the clonoscopy, but I am full again. On Thursday I go for a motilaty test in Hamilton, since no place in T.O does it. Fun stuff. So more poop tests, bioposies and xrays, Oh yeah and an ultrasound. I have been sleeping in between these procedures, asking for pain killers and gravol. My life sucks right now, I NEED to get better.

At St. Michael's In Toronto...should I start paying rent?

Well as you all know, I came to Toronto on Friday May 31st to see Dr. Durie for my first GI consult with him. He did the normal blood work and xrays. To my surprise he asked to admit me right away. He knew I was in pain, but my xrays showed a very extended bowel, one that was very full. He suggested we get my self cleaned out and get a few tests done. Well I proceeded to be put on morphine for pain and gravol, because I started to vomit. The sad thing was I went out to dinner with a good friend of mine for sushi the night before and let me tell you sushi tastes better going in than coming out! I have been in pain for over a week, but refused to tell my parents because they would have wanted me to go to Met, and I refuse to go to a hospital that has no idea about cf, or bowel obstructions. Since I have been in Toronto I have drank 9 - 4 litres of pegliyte( they call it go lightly here, they must have never used it, because you defianetly don't go lightly) I went in for a colonscopy yesterday and they did 4 biopsies of differant areas of my bowel. I have to wait for the results of those. They are keeping me over the weekend because they want to do a major biopsy that involves removing several inches of the bowel to test for some disease I can't pronouce( it starts with a H) It is a major surgery, so I am nervous about this, and I miss my kids a lot. I miss my hudband, and his touch. So I am drugged to the gill and trying to stay comfortable. The doctors are good, and the ward I am on is a cf ward so sanitization is amazing here. I am impressed on that one. So if my spelling or grammer is crazy, I blame the drugs, and I am sticking to that story.If you want to get ahold of me call St. Michaels at 416-864-5454 room #681 and ask for Kimberly . I would love to hear from you. Annika's port is been unaccessed , and IV drugs are done. David is still off of work, so he has been taking care of the kids. What a trooper he is. I am so proud of him. If anyone wants to do anything for him make a meal and bring it over for him. I am sure he is tried of fast food. Or he might need help with laundry or house cleaning? Just a suggestion. Annika is still complaning that her pee-pee hurts, so Dave is going to get that checked out. She is on vancomyacin for c-diff, and of course this med is not covered by any drug plan, so there is a mortgage payment out of our pocket. The Kinsmen helped a bit, so that was a relief. No one has been up to see me yet. I won't let them come up until the other surgery is planned. It is to big of a cost, and the kids need Dave and my parents. Dave could use a break though!Also keep in mind that I don't know how long I will be in here. At least we are doing something and finding out some answers. Love to you all. Send prayers for me, and most of all my kids and David. I am sure his sanity is in question now a days!

Kimberly

Saturday,June 2, 2007

Kim went into St Michael's Hospital in Toronto on Friday, June 1, 2007. She is full of it again. they have admitted her and put her on Peg Lite, Morphine and Gravol. They plan on doing a intestinal biopsy as soon as she is cleaned out. The doseages have been upped on both the morphine and gravol. If you would like to contact Kim call 416-864-5454 room #681. Annika is doing great, her port is healing good and she is done her antibiotics as of today. Kim will also have her computer in the next day or two, so you can contact her that way as well. Posted by Sherry and Todd Jarrold

Great Strides Walk - A healthy day

What a GREAT STRIDES WALK! A crazy hectic day, but a wonderful top off to this week. Annika's Dancers team raised $4200.00 for research. Thank you to all those who walked or donated. We appreciate everything you have done to support us. We had one of the largest teams there , and it was great to see a turn out of over 400 people. All together our chapter raised over $72,000 to date with two more GREAT STRIDES events at local schools to be added to this total. I know we will make our goal of $75,000 this year.
Our visit to Toronto Sick Kids was a great one. As far as Annika's chest infection goes, we will ride out the IV treatments at home, she will be done the 2nd of June. If the cough comes back we are going to debate a bronchoscopy done to see what she is growing deep down in her lungs, and then probably go the inhaled antibiotics route. She isn't coughing at all now, which is fantastic. I guess it goes to show mom always knows best. I knew IV antibiotics would do the trick.
Her IV port is healing up great, and we ablsolutely love that it has taken away the fear of needles for Annika
Dr. Durie , her GI doctor was impressed with her weight gain, so no GI tube right now. She weighs a whopping 21.5 lbs. The most she has ever weighed.
So health wise, things are going really good for Annika.
I head to T.O for my GI appointment on Thursday, so I will post then when I know where we are going on that front. The next cf clinic for myself is June 11. So we should have lots of answers on me by then. Cheers everyone, and thank you, thank you, thank you , for all your love and support. Right now I have been so busy, but please know I think of you all often!
God Bless,
The Hassons

Finally a Safe Haven

We arrived home yesterday after a very stressful port surgery. Annika didn't get called to the OR until 8pm at night. She went all day without food or drink,, and handled it very well I might add. (although mommy had to trick her and place bandaids over her nipples and tell her boo-boobs where broken) She accepted this, which was a God Sent!
Once finally into the OR, I informed the doctor in charge of her meds. and drugs that she is a hard knock out. Of course I got the pat on the back and a nodding smile. Oh how I hate those smiles. Those smiles tell me" Yes mom we know you think you know everything about your daughter, but I am the doctor" Sometimes I would like to box those smiles into the next room. So we proceed with dosing Annika with Midazolam, 1mg funny thing is she didn't get sleepy, or drowsy. Actually the doctor was surprised by this. So surprise I got to accompany Annie into the OR on a gurney ride. She got more of the same drug. Nothing. The doctor got called away to the phone by OB. When she came back Annika proceeded to wave and comment"hi" to her. I remember looking at her and asking" do you believe me now?" Of course with a very wise ass smile! She replied how shocked she was and proceed to give Annie two more injections , which finally did the job.
I was escorted to the waiting room, where I was advised the surgery only takes 45-60 minutes. You can imagine the condition my nails where in when we hit 1 1/2 hours and still no one out to get us. At 2 hours, I started pacing and looking down the OR hallway in time to see and hear my screaming angel rolled into recovery.
The surgeon told us she had a really hard time threading the port, that her veins are extremely small, and she kept hitting the bone in her neck. She said we made the right choice to do this procedure, she could only image what placing a picc line or IV would be like.
Annika was out of recovery and nursing my now miraculously healed boo-boobs. She was content, but in pain. They gave her codeine and tylenol and we went to sleep. We had arrived back to our room after 11pm. A crazy , long day.

The next morning Annika was complaining of a lot of pain, and she had a lot of bruising because the doctor really had to work at the port to get it in. Her poops have been pure water coming out, and we had her on constant drugs for the pain. This cf and c-diff thing sucks. Like one isn't bad enough by itself.
I was so glad to hear we would be going home the next day if the port could be accessed. It was, not without the screams of Annika. Poor thing.

So to get to today.
Last night was the first day on home meds, and besides a delay because they sent the wrong meds....everything went smoothly.
I did her IV's this morning at 7:30 am , and she is due at 3:30 pm and again at 10:30pm. I will be doing all the meds. A nurse stops in to check on me once a day. She will have her access changed this coming week, and next week. Only fourteen more days of meds to go. Her cough is totally gone. Now we just have to get the poops and weight loss under control.
Annika goes to Toronto to see Dr. Durie our GI specialist , and I am sure he is going to state a GI tube is necessary. Which Dave and I have already agreed on. We need to get her weight up to keep her lung function high. Her survival depends on it. So keep us on your prayer list, I am sure there is more crazy hospital visits to come!

On the right track

As I lay next to my daughter as she sleeps in this generic hospital bed (which I am sure card board boxes piled on top of each other is more comfortable)I look back at the last 5 days in this place and wonder how we made it through with our sanity in tact. I consider myself blessed. Blessed to have wonderful support from friends and family. Blessed to have a supportive husband and son. Blessed to have a great group of online cf parents, who I am sure don't know half the effects their supportive encouraging words have on a mom in my situation. Blessed to have been given great nurses on the paediatric ward. I am blessed to have an absolutely amazing daughter who is sweet and sassy at the same time. Who fights with every once of her being, and who melts me with just one smile. I am blessed to be her mom.
That is why I don't feel guilty for saying things to medical staff, nor will I apolagize for my behaviour. I am my daughter's advocate until she can speak for herself.
That is why my husband and I have made the decision to get a port a chath done ( some call it a medicath or mediport) the surgery is scheduled for tomorrow afternoon, and I am both excited and saddened by it. Excited because our daughter will no longer be poked like a pin cushion, but saddened by the reality of our life, and the way cf has taken a toll on our emotions, and or whole existance. I lay crying by my child. Crying because of the decisions my husband and I have been forced to make. Crying about the impact these decisions have had on our lives, our marriage. Crying for the life my son has no choice but to live. Why should any child have to play in the halls of a hospital with their baby sister. He is such a wonderful boy, who I feel at times gets neglected. I cry because of the fact that I am getting to know every corner, wall and hallway of this damn hospital. It is so frustrating!!!!!!!!!!
So add us to your prayers please. Annika's surgery is scheduled for early afternoon. Please pray for a great outcome. Pray for guidace for the surgeons operating on her, and pray that we get out of this hell hole soon
Goodnight everyone. Thanks for sharing our journey.

The day after Mother's Day....or should I say the day from hell!

Well it started off by nurses trying to wake Annika to give her oral meds. I told them to go away , that if they read their charts they would note that we had a rough night. LET HER SLEEP! Secondly the nurse tells me no nursing, she is scheduled for a picc line. Great- yahoo! But then she tells me I will bring in the morphine, adavan and gravol for her in a sec. WHAT! I told the doctors she can't have this, last time she had it she puked for hours, and never went to sleep, it acted the oppisite way she was strung out and hyper for 16 hours. Ok so I am waiting and waiting and Annie is getting pissed because she was woke up and she is really hungry. The picc unit and doctors can't seem to communicate at all. Finally 3 hours later and a screaming child( and Mom) go down for the picc line. The doctor faxed over new meds, which I told him what worked on her in the past at London for the picc line. So they take Annika from me, and she proceeds to cry for the next 1 1/2 hours why they search for a piss site with ultrasound. Not sedatives. Finally the doctor comes out and says , the right arm is shot, no chance, her vein is too tiny, they are going to the left. Still she cries. An 1/2 hour later he comes out saying he couldn't get it threded, her veins are too tiny. I ask "The sedatives didn't work, I heard her screaming the whole time?""No he says they didn't!"I ask "Did you still try for a site while she was squirming, etc?"Yes ". I just about lost it. You mean you were trying to poke a foot long steel needle into my daughter's vein right next to her main artery while she was being pinned down and screaming and squirming. "Yes he says and walks away. I am going crazy. I go in the room and get my daughter and say to the nurse who administers the drugs. Did you give her the right stuff. Do you call that sedation. She replies"She was sedated"I replied, I was outside the door I heard her screaming for over an hour. Yes but she wasn't bad. WHAT! I replied, next time you go into surgery, whould you let me sedate you , I will be sure to return the favour. She wasn't impressed with me. I come to find out the doctor didn't issue the drugs I requested, "because I am just a parent, not a doctor"Okay ass, I probably know more about my daughter's treatments and what meds affect her than you do"I wanted to bash his head against the wall. I am a very angry mom right now.
So finally Annie gets to eat at 1 pm and now won't let a nurse near her without crying the whole day long.
We have a scheduled consult with a surgeon tomorrow for a port a cath, God pray for us please. We need to get out of here!
Kimberly

What's next?

Well we have gotten some results back on Annika. She has c-diff(http://ehs.wustl.edu/Clinical/factsheets/cdiff.pdf)So we are now being put on an oral antibiotic Flagyl. For 10 days. Fun. So she is on tobramyacin and ceftazadime IV every 8 hours for the cough, and inhaled tobi 2 x day plus her q-var and ventolin. We are in room 3226 at Metropolatin Hospital. She has had chest xrays and sinus xrays( which we should get the results from tomorrow) , throat swab ( they got a good one, she coughed as they did it with a yellow mucous sample)that is still culturing. They have done blood. And she just had a cath for a urine sample. The plan is a picc line insertion on Monday, but I won't hold my breath!I knew she wasn't right the last few weeks, but because she is a happy baby, they assume she is fine. Mom's know best.
I am going stir crazy in confinement! I need a get out of jail card ASAP. Happy Mother's Day to all those moms reading this. Hopefully we get a pass to visit tomorrow. Keep us in your prayers.
Hugs
Kimberly and Annika

We are on our way to Met Hospital....fun!

Well we will be waking her up soon and heading to Met hospital for a stay in house for IV meds. She has had a cough forever, and oral meds are not working on her. She is not eating well, or drinking much. She has a fever and is coughing like a smoker!
Mother's Day, my husband's , my brother in law's , and my neice's bithday in the hospital. If she does well on the meds, then they will issue a pass for Sunday for a few hours to visit everyone for their special day. Come Monday they are planning to install a picc line and send her home on IV meds for 3 weeks. So no cabin trip up north for us. We have an appointment in Toronto with her GI doctor on the 25th of May. So hopefully we will be able to attend the Great Strides Walk. They may want to keep her to place a GI tube , she is not gaining any weight, so this is a huge issue. We will see. If she is out for that time I am going to discuss an IV port and a bronch being done on her.
I am stressed to the gills.
To top thing off, she will be in confinement because she has a cough and possible PA! http://textbookofbacteriology.net/pseudomonas.html So if you come to visit, bring fun things for her to do...lol.
This time last year we were doing the exact same thing in London, she was released 3 days before the walk.

If anyone hasn't donated , now is the time to dig deep into your pocket and donated to our Great Strides online
at:
https://secure.e2rm.com/registrant/personalPage.aspx?EventID=9734&LangPref=en-CA&RegistrationID=273664

or send a cheque to :
324 Secord St., Box 1205 Harrow Ontario N0R1G0
Make it to : The Canadian Cystic Fibrosis Foundation. Anything over $10 gets a tax receipt!
Help us find a cure for this madness!

Thanks for reading about our madness!
Hugs,
Kimberly

What a great birthday!

Well my 35th birthday was celebrated at the National Canadian Cystic Fibrosis Conference in Cornwall this weekend. To start things off , at introduction, over 150 people sang happy birthday to me. At lunch time, the board allowed me to view Annika's Great Strides video on two theater size screens. So her video was shared with hundreds of people. ( there is a link to a similar version below). I got to spend some time with Heather Cariou , author of Sixty Five Roses, a sister's memoire. Annika said " Happy Burp-day mommy" ( her version of Happy Birthday) to me on the phone. The news was offically released about the cepacia vaccination, and the phase three trails on the vaccine, and to top things off at social hour in the hospitality suite....I put a challenge out there for all the people attending the conference to dig deep in their pockets for spare change and donate it to the Great Strides Walk. I raised $502.50 that night from spare coin. How will I ever top that birthday!

Non Profit status for an Angel's Wings

Yes we are working on it! We got the forms back with suggested add ons. So we are working on our status. Mean while the local rotary club has offered to accept any vest donations on An Angel's Wings behalf, and issue a tax receipt. How kind is that? So we can start accepting donations, and our clients will receive a tax receipt for their kind donation. Welcome to the world of giving. Let's make some families happy!
www.anangelswings.com

Our trip to Sick Kids March 30, 2007

Hello Everyone,
I haven't had a chance to respond to anyone's posts, so please forgive me, I pray and hope everyone will be healthy and heal. For those who are not sick.....rock on!
Annika had her appointment at Toronto Sick Kids on Friday....we are staying in T.O visiting friends, and having some well deserved family time!
Well the results. Her chronic cough , according to the respiroligist and her x-ray are probably ashama linked, not cf. Her xray is congested, but no scarring(yeah!) So we are on prednisone for 5 days to see if it makes a differance. Her lungs are not a real concern to them right now, her size is. Which brings us to the issue of our visit to Toronto in the first place.
We are doing more fecal studies. We did blood on her and myself for celiacs disease. They suspect that we both have it. On top of cf.....boy did we win the disease lottery or what. A simple blood test will send us in the right direction with that study. If our blood comes back positive, then they to a biopsy of the deodeum to secure a positive result. Our diet will be even more fun then....lol! I shouldn't be laughing, but man....what else can I do?
So this is where we start first. For the next month we do the increased enzyme thing , like we have been doing already. She has already gained a pound in 3 weeks with that. If she starts to fluctuate with her weigh again then we do one month of Zantac to raise her ph level in her stomach to aid in digestion. In two months, we have to go back to Sick Kids. If things don't change then, with these two options, a GI Tube will be the next result. I guess they don't like doing them until they ruled out all other things( which I feel happy about) So in the long run we got answers, met the best GI doctor in Canada, and to top things off, he invited me as an adult to see him in Toronto, and for him to try to help fix my GI problems. He suspect(Quote) that my GI problems are not cf related, but possibly celiacs....we will find out soon.
So I am off to play with the kids, and hubby and I are going on a subway ride with them to our friends house for dinner tonight. We will be heading home tomorrow to start a new fecal study at the end of next month. I have to stop breastfeeding for 3 days, so it will be easier to do this when I got to Cornwall for the cf conferance, and I will be away from her anyways. Weighing food, liners in diapers, oh fun. But if it helps them decide what action to take next with her GI issues, than it will be worth it.
Talk to you later.
Kimberly in the big city( with no sex) lol!

I turned TWO !!! March 13, 2007

Well my little one turned two. My, where did the last two years go. Between raising a family, working, and hospital visits....two years flew by. So my little girl turned two, and she is already acting like a teenager. It must be a female thing....lol. Oh well, I will take whatever I can get. She definately is the apple of one of my eyes, Parker owns the other.

The Hasson's Walk for a Cure! Join Us!

Hello Loved Ones!
Just a update on our family, and our fight with "CF:
Recently we have been advised that Annika will likely need a feeding tube (G tube) to help her start gaining weight. She has been slowly losing weight for many reasons. First and foremost , Kimberly has been very ill over the last six months. She has been admitted into local hospitals over 5 times , for a minimum of 1 week each stay. Annika missed her mommy, and even though she could out eat her big brother Parker , she still needed constant prodding to eat more. And while she loves her daddy and family and friends very much.....I guess only mommy had the magic touch for cooking her favorites?
Annika has had a constant cough for over 7 months that has not responded to treatment, so all that coughing burns calories. Calories Annika can't afford to loose. Annika loves to eat.....she really loves different flavours and "mm mm" and "aahhss" over so many things. But no matter how many calories she seems to eat, it doesn't seem enough. And with cf, weight gain is a huge issue when it comes to fighting an infection. We will be meeting with the whole cf team at Toronto Sick Kids on March 30 to get the final opinion on the matter. Other then those few issues, Annika is a growing, happy, sassy....did I say sassy little girl who loves her family( especially if she can beat up Parker or pappa) She is the apple of our eye, along side her very loving and supportive big brother, Parker.
Kimberly is working hard over-coming bowel issues, a frequent lung infection and kidney problems. She is on the road to recovery.
David is working hard re- training for a future new career. He is enjoying time with his wife and children( some days more than others....lol)
This time is of the year is very important to us. May is Cystic Fibrosis month, and during this month we do a very important fund raiser/
I'm participating in Great Strides.

You can help support me by making a secure on line donation using your credit card. Click on the link below:

https://secure.e2rm.com/registrant/StartUp.aspx?SID=1385348


If you would like to join our team , please register. Our team name is Annika's Dancers. Last year we raised $2000.00, we are shooting for more this year. Help us reach our goal!
For more information on how YOU can participate in Great Strides, please visit us at www.cysticfibrosis.ca/greatstrides

Any little thing you can do, please remember every little penny matters. Let "CF" stand for "Cure Found"




God Bless Everyone,
Love David,Kimberly, Parker and Annika Hasson

Our Great Strides Video 2007-a sample version

Here is a sample of our Great Strides video. The actual one is done with photoshow and last almost five minutes, but this will give you a preview. Hugs to all.

Make video montages at onetruemedia.com

When Life sends you spinning

Well today is another day at home alone. I have been eating lactobacillus so that has helped the stomach cramps and nausea. I am really stuffed up so vicks and eucalyptus has been my best friend. I am very weak, so I decided on another day alone at home. I miss my family horribly, but the kids are be taken well care by my parents. If all goes well, and my energy level is up I will get mom to come and get me tomorrow. I am eating carbohydrates and protein and managing iced tea, resting throughout the day, but getting small things done a little bit at a time. So far drug free today,except gravol and I am gonna try to stay that way! I have talked to Dave 2x already he should be home tomorrow night, mentally he seems much better, I think the trip to the cabin did him well.I know the stress I have felt while sick , I can only imagine the stress he had to go through, being laid off, starting a new job while I was in the hospital and leaving the kids in other people's care, then quiting that job because Annika's cf clinic went poorly, so he panicked and quit his job to assure she was getting the right care. All in all ,he has gone through allot in the last 6 weeks. She has been fighting a cough, traveled with family, her mom has been in the hospital.....of course she is going to loose weight. As soon as I am well I am going to start her back on her homeopathic regimen for her lungs and turmeric for weight gain. The doctor mentioned a G-tube and this is what set David into a downward spiral.After I am mended, which I pray is soon. I think I am going to suggest counseling for us as a couple, since what we are going through would be tough on any marriage, and God knows I love my husband. I also have to rally my friends and family together to train them on Annika's care. So many have offered but we have just put the offers aside. Why I don't know, maybe pride. But I have prayed long and hard about this and I know we can't do this alone. So those who want to help, please let me know. Any way, time, meals, etc. I will except it in prayer and thanks.Please continue to pray for my healing and pray for Parker's, Annika's , and David's emotional well being. For those who deal with cf daily, I pray that you and your children stay well. For those reading this , who have a "normal" life, I pray God gives you the knowledge and compassion to understand what fears we battle, minute by minute, day by day.
God Bless everyone who reads this and responds. God Bless those who are too busy not too.

Kimberly Hasson
Going on 21 days of feeling like crap and without her sweet, sweet children
Staying strong in prayer!

One more day in hell

The nurse just came in to tell me that the local GI doctor has given me the ok to go home, and the resident doctor has decided to pass my case on to another doctor. Maybe because I flipped out on the GI doctor and him yesterday.I told them they have done no tests on me, besides a CT scam and blood test. They have given me 4 litres of peg lyte, in addition to me taking my own peg 3350. With the motility drugs and the peg products I should be crapping through the eye of a needle. Am I no, I have has one decent poop, and since then the poops are soft and small enough to sit in the palm of my hand. Does that sound like enough poop for a body that hasn't pooped in two weeks, and has been eating full meals everyday? I am going to continue to take the peg till I poop water.
So know I have no doctors till tomorrow. A (Mrs.) Dr.Stien will be taking over my case. So to sum it up, Windsor sucks, and my loving husband is rubbing it in with "I told you so, London is where you should have gone" The day I came in, it was snowing like crazy and I didn't want to risk the two hour drive.Dr Howard my cf motility doctor in London has been trying to get ahold of the two doctors on my case for 3 days to get some tests that he needs done performed on me while I am in here. Neither of the doctors have return calls or answered their pages from Dr. Howard. I am so mad , I could kill someone!
I just want to feel better with no pain or vomiting. I am not going home till the pain is gone, or at least we know what is causing it, and I am not puking. I have a picc line in now, so I am staying hydrated.

Poked ,bruised and defeated.

Well as of January 21, I have been a resident of Spa Met, or what others might call, Met Hospital.
My bowels are all backed up and not working properly. And now the doctor has put me on antibiotics because he thinks I am coming down with a chest infection. I have gone through 9 IV sites in less than a week. I am bruised everywhere, and in pain . Too top things off "Auntie" came for a visit. Man being a woman can suck at times. I miss my family so much. Dave is bringing Annika up for her cf clinic on Saturday, so hopefully I will see her than. Everyone says Annika is doing fine, she just keeps asking "where momma go?" Parker is starting to act out a bit, and Dave is so preoccupied with everything that needs to be done, and Parker is being put aside. My little man needs some extra attention. He came up to see me one night, and I talk to them on the phone, but I don't think it is the same. My kids miss me as much as I miss them.
Say some prayers for my family, and that we can be together again soon.
Unhappily complaining about the food....
Met Hospital RM 4111B

A wish is a dream your heart makes.....

Well Santa blessed us with a trip to Florida, and Walt Disney World. Thanks to my parents , Dave's mom and my brother's family, we got to go on a fantastic trip. We really budgeted our cash, since it was really limited. The kids had a blast (even the little ones) Annika and Parker loved meeting the characters and getting their autographs. We stayed at a beautiful condo, with a heated pool. Over all it was a great trip.