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