Home, and healing

Well last night the hospital discharged us. They came to the conclusion that Annika has a viral infection, but they are not sure where. Her white blood count is still high, but basically they can't do anything more for her in hospital, so we all decided to come home. Home is so healing. Just waiting for Annika to get her tonsils out. I am going to call her ENT tomorrow to let him know she had another hospital stay. Hopefully he can get to her soon. The doctor in the hospital stated this infection could be ENT related for sure.
We got to go to Ann's house for the Hasson family Christmas party. Annie didn't eat much, and either did I . This gallbladder is kicking my arse! Can't wait till the 21st!
It was so nice to be with the Hasson's with no squabbling, or fighting. Just lots of laughing, which was so refreshing. I actually enjoyed myself. Joelle idolizes Annika. We got her a princess shirt, just like Annie's for part of her Christmas gift. Annika had hers on, and when Jo Jo opened hers, she insisted she have hers on right away. It is so cute. That is exactly how Annika used to be with my niece Dawn. It is cool to see the generation circle continue.Baby Tess is getting so big, and cute.The kids got spoiled as usual. But in a good, practical way.
Today I am resting in bed. My body is not well. I feel so weak. It is very frustrating as a mother to not be the caring, nurturing mother you want to be. When you are in pain, and weak, it is hard to play even Lego.I hate my body, I hate this disease. I see myself slowly going on a downward spiral. I look at myself in the mirror and think, who is that woman looking at me. The dark circles, the pale skin. I used to be so vivacious, what happened to me. What did this disease do to me. What will it do to Annika. I am struggling with those thought. I couldn't help but think every other child is home with their families enjoying family and friends. A good Christmas dinner. Visiting households, playing with toys. My daughter and me are puking, fighting fevers and body aches. Fighting this disease. How is that fair. How is it fair that my son has to watch his sister scream out in pain, or hug the toilet. How will this disease effect his life. How is this fair to my husband, who when he married me , had NO IDEA what his future held. How does it effect his mental and physical state? How is this fair to my friends, who get neglected. I understand how they feel cheated. How this disease takes from them also. How is this fair to anyone.
I need those friends, I need my family, but what can I offer in return.
Today is my father's 69th birthday. Annika made a birthday card for him, which I know will be the most treasured gift he will get today. Those kids are my father's whole world. I honestly think they are the reason he goes on. We got him some presents, and Dave is going to take the kids to Walmart to get their final gift with their Christmas money. On the way home he is picking up Chinese food from our favourite restaurant for dad's birthday. So I will be trekking over there tonight in pj's, how insane is that.
Don't get me wrong. We have lots to be thankful for. We have wonderful family and friends. We were all together Christmas morning, and are now together to celebrate another year papa is here. We have lots of love in our life. We have a roof over our head, we have a vechile, and health care. We have much much more than some. I just can't help be frustrated with it all. Thank you to those who visited Annika in the hospital . Annika loves those visits. Thanks for the phone calls and emails. They do help, honestly. And thank you most to those who helped Dave and I with the animals and Parker. He is such a great kid!
Thank you for your love.

Feel like I have been hit good on Boxing day

Annika's white blood cells came back high, showing infection somewhere in her body. CT scan is negative for appendix. Swab results for cultures are still pending. Annika has been up half the night with stomach pain and nausea. She hit 39.1 again at 2:30 am. I have been up since then. She has been tossing and turning, yelping out in her sleep. Never getting totally comfortable. We have been giving her Tylenol and ibuprofen , they have seem to be able to break the fever. Let's hope it stays at bay. She is totally soaking wet from sweating. I wish I could take away her pain.....lol. Like I don't have enough for myself. Gallbladder is my worse enemy, all food triggers an attack now. Sucks to be there mentally for your child when the pain is distracting you. I am doing my best. A few weird circumstances this hospitalization. Crazy universe.....lol. We will see how these weird events pan out. Hoping we can get some answers soon. Not sure if Annika will make it to Grammy Annie's Christmas party tomorrow. As long as Parker and Dave get to go, they need some kind of normal over the holidays.....grrrr.

Our not so Merry Christmas

The day started off as an Christmas day with to eager young children. A very excited son , shaking me awake and begging to wake up his baby sister. Off Dave and I go , putting the kettle on, letting out our four legged fur babies and calling mom and dad to let them know the kids were up and waiting for them to tread the 50 ft to our back door. ( For those who don't know , my parents live on the the same property)
Parker and Annika were content to fish through their stockings until Gramma and pappa arrived, with presents in tow. Annika had been up from 1am to 4 am coughing, and I along side of her with nebulizer in hand, and clapping palms to do physio therapy. I had already been up because my nasty, useless gallbladder has been reeking havoc on my system. ( I have a scheduled surgery to remove it Jan 21st) For a little girl who didn't have much sleep, she had a fair amount of energy. Ahhh to be young again.
So we giggled and laughed, and savoured the ripping of present wrapping, and the sound of the logs crackling in the fireplace. The animals were chewing their rawhide treats from their stocking , and the kids were content to gaze upon their new treasures. My mom and I were preparing brunch, and dad and Dave where relaxing( well if you call relaxing trying to free all the new toys from their packaged prisons..lol)
After brunch, mom and dad went home and I put the bird in the oven. I went and laid down and Dave in the kids were watching some new Christmas movies.
I got up around 4 pm, a nice hour snooze and noticed Annika asleep on the couch. I just figured she was tired from the sleepless night. But Dave told me she had complained she wasn't feeling well. When she got up , she was on fire! Burning up. We took her temp and it was 39.....so Tylenol in and gravol in , because she was complaining she was nauseated.
Then the fun began. So in between getting dinner ready, I was putting cold rags on her brow, giving her more fever control, hooking up Gatorade in her feeding tube. Did I mention we had dinner for my family.....argh. So my mom came up early and help with the dinner, in this time I got Annie comfortable. My dad wasn't feeling good with a cold, so we sent a plate home for him, and mom , Dave, Parker and I tried to enjoy dinner......did I mention my gallbladder sucks...lol. Annika started crying during dinner from my bed, so off I went to comfort her while Dave and mom cleaned up. I had made a vanilla birthday cake on request from my kids for dessert. They wanted to sing Happy Birthday to Jesus. SO once Annika was calmed again, Parker was pleading to have cake. Why should he always suffer because of cystic fibrosis. So him and I held hands. Said a prayer of thanks and then my mom joined in with us singing HAPPY BIRTHDAY JESUS.
Parker got his cake, and I got to see a sparkle in his eye.
Annika started really complaining at this point, so after another dose of ibuprofen ( we have been alternating Tylenol and ibuprofen every 2 hours) her fever had not broke, so we gave her a bath in tepid water. She screamed like a banshee, but in a short while the combination of the meds, the bath , and g-tube hydration broke the fever.
Around 8:30 she was pleading to watch a movie with me and her brother in my bed. So we put on The Sorcerer's Apprentice. Annika was happy, Parker was camped out on the floor, and I was in my new pj's. Life seemed good. Annika even asked for some cauliflower and dip and some plain mashed potatoes. Easy, peasy, no problem.
So kids have both had a snack, Daddy is snoring on the couch, and we are about 3/4 way through the movie. Annika states she is feeling dizzy and tired, so I tell her close your eyes and fall asleep. She does.
So Parker and I are trying to finish this movie, which by the way is pretty decent. And we both jump out of our skins when Annika wakes up screaming in pain. She is clutching her lower right side, screaming it hurts. Shaking uncontrollably and yelling it hurts, and i can't stop shaking, mommy why am I shaking. Her eyes are dilated, and she is convulsing. I scream at Dave to call 911. Parker is holding Annika's hand, the whole time rubbing his sisters hand while she tells him through tears it hurts Parker, it hurts Parker. Parker is crying, but not leaving his sisters side. I am holding her tight, because she won't let me put her down. Dave is calling my parents to come get Parker. And I now notice that Annika's fever has spiked back.
Her heart is racing, she is shaking, screaming in pain, and on fire.
The ambulance was there in 5 minutes. The EMT's stated her right side abdomen is rock hard, she has a fever of 39 and her heart rate is over 200. We are rushed to Leamington hospital. They see us right away, get her hooked up to IV and take blood.
Her white blood count is really elevated and they hook her up to zofran and rochephin. More Tylenol.
Leamington calls Met, and we transfer care. We managed to get the pain to stop, and break the fever and here we lay for the night. More blood in moments, and a ct scan or MRI tomorrow.
So there we are. That's our Christmas in a nutshell.
I will post more as I know more.
Hugs to all my friend and family.
We are in room 3228 on the 3rd floor at Met hospital in Windsor. Merry HO HO HO!

Surprise admission to Met hospital

Well around 7pm on the 9th, Annika started vomiting out of the blue. And this started the whirlwind of the tornado we are participating in today. When it stops, who knows. Annika vomited at least a dozen times, with severe right lower side pain. With cf the first thing that popped into my mind was bowel blockage or appendix attack. So off to Met we go, as there was recently a huge snow storm in London where Annika's cf clinic was. We got to see a doctor quickly, they did blood, xrays, and a general work up. The xrays came back fine, and the blood had elevated white cells. Once we got so gravol in her IV , he stomached seemed to settle down. The doctor said we could go home and come back in the morning for an ultrasound. Off we went home, but shortly after arriving home at 1:30 am the vomiting started again. Then within a few hours a high fever and more stomach pain. So off we go to the ER again at 6:30 am. Once we arrived at the ER , Annika's temp had hit 40 degrees, normal being 36.9. They rushed us in, got her hooked up to an IV, did throat swabs, more blood, more xrays, and admitted her to the peds ward. We were up in our room by 3pm on the 10th. The new ped doctor is great. He expressed his concern on how lethargic she was, how dehydrated she was, and how high her fever was. We had to wait on blood cultures and throat cultures. He put her on an IV antibiotic, gravol, Tylenol, and ibuprofen for the pain in her side and now in her throat. She continued to have a fever through the night, and side pain. She is also covered in a rash.They ruled out the appendix, and are now focusing on her tonsils which are so swollen that they are obstructing her throat. The doctor thinks not only does she has repeat tonsillitis, but a lymphatic issue. Her tonsils and adenoids need to be removed. We should be seeing an ENT tomorrow. We now have her on ondansetron 2mg every 8 hours for vomiting. It has worked like a charm. She is eating in small bits because her throat is very sore. This drug they give to chemo children, and works great. The IV antibiotics are ceftrioxime 1gmg every 8hours. This drug has seemed to help. Annika today is a happier child. While her tonsils are now huge, the throat pain, and side pain are better. So the goal is keep her hydrated. Keep her out of pain. And the best part......and ENT is coming to see her tonight or tomorrow, we are pretty sure we will be getting her tonsils and adenoids out. The doctor just told me that some of her cultures and newest blood results are back. Her body is colonized with strep. Poor baby. No wonder she crashed so hard the doctor said, in addition to the tonsils and it is a recipe for trouble. So a few more days in this place, not too bad. She is in room 3227 at Met hospital if anyone wants to call up. And anyone coming up to Windsor, and wants to bring up to MISO soups for her and myself. You will be embraced with a huge hug....I will update as I get updated. Take care.
Hugs from Kimberly and Annika