Sneezing ,coughing and sleeping

Annika has had a cough for almost 4 weeks now, and the doctor has put her on cipro, to cover any bugs we might be missing when we do a throat swab. Her cultures keep coming back negative.
She is full of energy and getting into everything. Annika is finally used to Parker going to school now, so she often waits patiently for him by the front door. Annika loves her big brother.He brightens up her day.

Fixed teeth and tired parents!

Okay we are home and settled into bed! (at least the kids are!)
Annika made it through the surgery fine. She now has Angelina Jolie lips from all the stretch for the dental work. The swelling is already going down. She officially has her own bling-bling in her mouth now. Two fully capped silver teeth, and two white filling teeth. Four repair jobs altogether.
I hate enzymes. I am trying so hard to not let her chew them. It is so hard to prevent it at this age though.
I am so emotionally and physically drained. With David being laid off, Parker getting over his throat infection, Annika coming down with her chest infection(which she is on Biaxin and steroids for) and to top things off dental surgery, with a first time sedation and chest tube....arrrggghhh!
Now off to London to see my mobility specialist . So little sleep for the wicked.
I am so drained of energy. I am so tired of sickness.....I need a vacation.

Mean mommy missed my teeth! I am Captian underpants!

Well we just found out that Annika has to go under for teeth repair. I figured she had been teething because her appetite went down this last week and she has verbally been complaining about her teeth. Well I look in her mouth today after she fought with me when I was trying to brush her teeth(which she never does because she loves the toothpaste) I open up her mouth to see what teeth were coming in and giving her such a hard time and bam! Right there in front of me is a broken tooth, the fourth one from the front to the left. A huge chip off of it, almost 1/4 of the tooth, you can see root. No wonder the poor little thing has been complaining. I feel like a bad mom, I just assumed it was teeth coming in, not roots exposed.
Well we took her to the pediatric dentist ASAP. He took one look and saw that tooth, plus another crack in one tooth on the opposite side. He also stated the lowers looked week and might need caps.
So we are scheduled for Wednesday (time unknown as of yet) for dental surgery, which she will be knocked out for.
Poor little thing. Thank God for booby juice, she sure has been nursing alot lately.
The good thing is she is still full of energy. She loves putting on clothes from the laundry basket (as I am folding them) This day it was Parker's underpants.

The enzyme fairies are happy!

Well since coming back from Toronto, we increased Annika's enzymes. Toronto's biggest concern was that Annika was falling off the growth chart.
We went to see Dr. Morgan today for a check up and vaccinations. Dr. Morgan's scales have always matched up with Toronto's and she weighed in at 8.87 kg, that's over a kg weight gain in 30 days. An amazing weight gain, over 2 lbs! Yahoo, the enzyme fairies are happy!
Eat baby girl eat!

Annika's first infant pulmonary function test.

Well we had Annika's first pulmonary function test in Toronto on the 14th of October. Besides her waking up during the test, everything went well. Annika's cultures came back negative and her blood checked out normal. Her FEV's were great!
So besides increasing her enzymes because they are concerned about her weight. All went well.Here is a picture of our big girl looking over the Big City.

I Ho , I Ho, It's off to Toronto we go!

We are heading to Toronto Sick Kids next week for Annika's first pulmonary function test. We are going to the cabin for the holiday and then heading from there to a hotel for an over night stay. We are taking Parker so he can be with his little sis'
, they are each other's best friends right now. She screams every day that he leaves for school. Annika is the first to great him when he gets home.
In November I have an appointment with Dr. Howard for my motility issues with the bowel. Hopefully we can get some answers then.
Happy Thanksgiving to everyone. Drop us a line and let us know how you found us, and if this site was helpful?
God Bless

A trip to hell and back

Well it started over 4 weeks ago. I had a pain in my lower right side. I tried to ignore it, but it didn't go away. Finally on August 25th, it got so bad, I was rushed into the local hospital. The doctor took blood and couldn't find anything wrong, so he was going to send me home.
I remember starting to cry and begging, you can't send me home like this with two kids, I have been puking from the pain and can barely stand up!
They kept me. What we thought would be a few nights stay turned into a trip to hell.
I was at Met for two weeks. A horrible stay away from my kids and husband! I pumped 4-5 times a day for Annika, while she got moved from family member to family member( at least we have the help!)
My poor husband was going insane trying to keep me sane and run a household and care for 2 kids.
They ended up doing a colonoscopy(which was crystal clear), and laproscopy for lady problems(which I knew it wasn't!) Well when all the results came back negative, they released me. Even though my barium x-ray show very slow motility. It took 3 days for barium to pass from the upper colon to the lower. It should only take 24 to 36 hours max. Hello Windsor, we have no motility specialist here so we can't prescribe the appropriate drugs. WHAT!
I was sent home on a pain patch and gravol.
Four days later I was at Leamington hospital(for another week) under the supervision of my family doctor who put me on two motility drugs, and imagine this I crapped like crazy and the pain went away!
I have an appointment (not set yet....arrgghh!) with a cf motility specialist in London, so we will see.
Lungs are still clear(and will stay that way if I have anything to say about it....lol)
Annika is doing awesome, she is walking everywhere and go, go, go girl. We call her Hurricane Annie....because she leaves a path of distruction everywhere she goes!!!!LOL! Gotta love her.
We all have colds, but are dealing with them fine.
Hopefully I won't be so disconnected from everyone, a family member got me a laptop, so I could contact everyone from the hospitals.
For all those who had supported us through this last visit to the hospital....thank you so much. We couldn't have done it with out you.
God Bless!

fhiurhtuhfihfwei-Baby Talk!

Well Annika is done all her I.V meds( has been for 1 1/2 weeks now) She is cutting teeth like crazy, so fevers, cough and funky poops are a part of my daily life right now.
I will gladly take these "normal" childhood aliments anyday....lol!
Annika still is not walking on her own yet. She will walk all over using your pinky finger, and cruise along furniture, she will even walk back and forth between David and I on our king size bed, no assistance. But soon as we bring her on the floor, nope- forget it! LOL!
She is a stubborn little feisty one, hmmmm? Wonder where she gets that from.
She is meeting all her milestones, to the point that we call her Hurricane Annie- she leaves a path of destruction wherever she goes!
She is full of energy, and is way more mischievous than Parker ever was at this age.
She is a whopping 19 1/2 lbs. A big achievement for us. We need to keep the weight on her.
She loves her big brother, she is actually as tough as him. We warned him that this would happen.
For now all is well in the Hasson household.
David is still working, I am trying to get funding for self employment, and Parker starts school in the fall. As normal as I guess we could get. All healthy(knock on wood and say a prayer)
Hugs to all that care!

A picc line! Small hurdles to jump

Well here we are all settled in London's Children's hospital. So we are on day 11 in hospital. Annika finally got her picc line yesterday. Thank God above! After being poked over 30 times in 8 days, she has had enough( as have I) with nurses and needles! Our cf doctor has been in and out of hospital for conferances, so she asked the head of peds to care for Annika, this is why we got the picc line on the same day he came to see her. We are trying to set up CCAC(home nursing care) for her meds . Her x-ray came back with apparent infection in the middle lobe, so I am so glad we pushed to be put on meds. Her cough is almost totally gone. And she is driving me nuts because she has so much energy.They are suspecting asthma or allergies, because she coughs heavier at night. And since we have been in a clean environment(that's what they call it, I would have to disagree) her cough has changed, so even though we know it will get better with meds, she is seeing a new peds allergist next week in windsor to get tested for cat and enviromental allergies. So at least that will be done and out of the way.So hopefully we will be home before the weekend. I miss my son, husband and home!Hugs to all, oh and sloppy kisses from Annika and Kimberly

When will this madness end?

Well, we are on day 7 at Met hospital. And guess what? We are on number 8 failed I.V.; all of them have blown or kinked. She has had over 21 attempts at starting an I.V. as of midnight . They have resorted to giving her Tobi Injections and holding the other antibiotic for now. This I am not cool about. Every day we go without antibiotics is one more day we have to make up for.
So no pic line. Why, you ask?
Well, our first attempt at a pic line they gave her morphine and gravol to relax her. My little energizer bunny would wake up everytime they grabbed her arm. So we tried Adavan to put her to sleep, and she did the same thing. So the pic was rescheduled for Thursday instead with general anesthetic.
We had a rough night Wednesday because the drugs stoned her out and instead of knocking her out they did the exact opposite. So we had a strung out kid, that was very aggressive and rough. She started puking for hours in the evening, so Wednesday sucked....big time.
Thursday morning came and went, and we were still waiting for the pic to be put in, here I am starving my child because nothing by mouth until after the pic is in.
They have an anesthesioligist, a O.R nurse(they wanted to do it in the OR because of her reaction to the previous drugs and because of the CF), a radioligist and a tech on board, but the head of radiology cancelled it because he said he couldn't justify an hour of his staffs time for a pic line. Boy was I pissed, I have gotten patient advocacy involved now, and possibly a lawyer.
So it has taken how many man hours to pin my daughter down, kicking and screaming to put in a total of 8 I.V in 7 days that all failed, plus the additional torture of all the failed attempts.
She no longer has an I.V because there are no viens to use anymore. So this idiot has wasted how many nurses' man hours, plus a few more 1000$ dollars of government money for hospital stay, plus 2 hour drive for us now to London, and a 2 night stay there, plus a two hour drive back. Dave will be off work one day now......should I send the bill to this idiot.
It is crazy. there is no room in London so we are waiting for a bed, meanwhile Annika is going without treatment.
I am pissed.....just had to vent.
Did I mention I hate this hospital (the ward is great and the doctor is nice, but the rest of the hospital sucks)
I hate cf!
What good is it to have a PEDS floor in a hospital when I can't get treatment!
I will update you all.

hugs,
Kimberly and Annika

The doctor just came in while writing this. There is no room in London or Toronto. They actually have a child here close to death and they have to send this child to Detroit. Crazy. So we are going to lightly sedate Annie and try a line again. The doctor is going to do it this time .
I am so frustrated, and crying because my little one should not have to go through this ever!
Gotta go, I will check back on emails later.
Love to you all!

Edit video online at onetruemedia.com

Update on Annika

Kimberly took Annika to Met hospital on Monday, June 26. She would have preferred to take Annika to the hospital in London, but London was full.

Annika is on 2 IV abx. They are treating her as thought she has a lung infection, even though her cultures are all coming back negative. She was scheduled to get a PIC line yesterday so Kimberly could take Annika home for IV meds, but the doctors rescheduled the PIC line for today.

Annika and Kimberly are in good spirits, although Annika has had 4 IVs so far. She sweats so much that the IVs slide out.

The rantings of a lunatic mom....

Well I am sending this out to everyone who has expressed concern or has called me in the last few weeks.I am very sorry if I haven't returned your calls!~
Since Annika's hospital stay, she has developed a cough that has not let up. She coughs so hard that she vomits. She runs a fever on and off. I am starting to feel like a hypochondriac. I notice every little thing with her that is not "normal". Annika never had a cough, so this is freaking me out. It is not just a "little" cough, this is a heart wrenching, make you gag along with her cough.
Her throat culture came back normal flora, but when they did a nose suction for RSV it came back adeno- causes tonsillitis, throat, nose and ear infections.
The doctor says her lungs sound clear. She is loosing weight( I often wonder is it is all the energy she is using on this cough and breathing)so I have been stuffing her like a pig. My whole life is treatments and feeding this child( not that I am complaining, it is ok considering the alternative of not having Annika)
She does Pulmicort 2x day, Ventolin 4x day, Enzymes with every feed(8-10 pills a day). She has Keflex 3x day and Vest 2x day. I throw in a manual CPT everyday. I can't even keep up to her holistic treatments, so they have gone on the way side. I want to start her on hawthorn, I have talked to many people who have their cf kids on it, and weight gain is a great side effect. She nurses 5-8 times a day ( yes you read right) she has a yogurt in the morning, I give her whatever we are eating with fat added at lunch and dinner. Anytime I am giving her enzymes I sneak in 3 - 12ml syringes of Scandishake for the calories. She won't drink out of a sippy cup.
My whole life is cf right now, no social club for me, though I fear I need a night out for sanity.
I am trying to concentrate on my health somewhere in there.
This is all ranting's of a frustrated cf mom.
I have a friend with cf right now, who is not doing well at all ( she is 42) and this just wakes me up to the realities of this crappy disease. I hate it. Today is a bad cf day! Thanks for listening to the ranting of a lunatic ...lol (sadistic laugh)
I know this to will pass. It is just frustrating when you are doing everything like you are suppose to and your child still gets sick.

Annika is in London

It seems Annika has a cold that she can't kick. On the way home from their camping trip on Tuesday, Kimberly and Dave took Annika to the hospital in London because they had been unable to get her fever to break. Her abx were changed and she was sent home.

The past couple days Annika has started coughing a lot and is no longer able to keep anything in her tummy, including meds, because she coughs so hard she vomits. Today Kimberly took Annika to the hospital in London so they can rehydrate Annika and see if they can help her get better.

Momma always said I was full of it!

I am slowly getting on my feet. It has been a rough one though! I was in Leamington for 5 days and London for two. I got more answers in London to explain my health problems, than I have here in Windsor area in the last 34 years. Crazy huh! Oh well things are healing, my lungs are clearing up and and my bowels are finally working great. I go 3 times a day now, I was lucky to go three times a month, so you can imagine the pain I was in. The thicker mucus from cf would clogs up my bowels. I am now on a prescription powder that I can mix in any beverage called Peg 3350, it is like the Miralax found in the states for the bowels. I had physio in London for my chest infection and I have been doing my vest daily, so it has made a huge difference! Everything is almost cleared up, I lost over 7 lbs of weight(crap) at the hospital...lol . We are heading up to the cabin( about 13 of us) this weekend for 4 days, so I will have a lot of help with the kids and the fresh air will do me good. Once I get my strength back I will feel like my sassy self. Both kids are doing fantastic. Dave has been an amazing help, and friends and family have been life savers. Anything helps during these times. It has been overwhelming. Gift certificates, cards, child care and meals. Its times like this that really humbles you. CF hit home this month. A reality check is what I needed to remind me to take care of myself also. Thank you for all the prayers.

An update on the family

Well everyone has been phoning or emailing to find out how we are all doing. I barely have time to pay bill(oh the dreaded bills) let alone answer everyone's concerns's. So I thought I would post to my blog and email out to everyone.

Calling all hands, calling all hands....S.O.S. We need help! S. O.S ! We need help now!
Annika just got over a chest infection, all that is lingering is a nasty running stuffed up nose. She was on steriods and keflex( still on keflex for 2 more weeks).This all started on my 34th birthday, April 27th. That night I came down with the same thing. The next day it felt like a ton of bricks on my chest and I went to see the doctor that morning.He put me on Avelon for 10 days. Great ,two cfers feeling like crap at home. Well after getting through the steriods( Annie was hyper...I MEAN HYPER) things seem to settle down for her, but I got worst. I started vomitting and back pain 4 days later. On Monday I was getting fluids via IV at our local ER. I proceeded to go back to the ER 3 days in a row, where they took xrays and blood, and urine and admitted me with pnemonia and kidney infection. So now I am coughing and puking up green, yep green which is bile! Yum!
They blew three IV ports/veins. And proceeded to poke me for an IV , 11 times. The twelth one I refused. It is a small hospital and they don't do picc lines. Know I go to Windsor for IV from now one. I was discharged 2 days ago, and feel like crap. I am coughing worst, stuffed up horribly and my stomach looks 6 months pregnant. The nurse practitioner in London thinks it is not a kidney infection, since blood is clear , but a bowel blockage(haven't had bowel movement in 7 days, and a really good one in weeks). So she is talking to the cf doctor today to try to get me admitted in London to clear out my bowel and chest.
So we need prayers! Lots of them!
We need some people to help with the kids! Annika needs extra care, and I am willing to break them up for the time I am in the hospital. I need women to start pumping milk for freezer please!!!!!!!!
Call Amber Joy at 726-6450. She will set things up between everyone(she was really good at this in the past)I hope she is fine with this....lol!
Meals would be appreciated. Any help!
Please
Love you all, and God Bless. I will keep you posted from the hospital, or Amber Joy will post on Annika's blog.
Hugs

Kimberly's trip to London

What a great day. First it started off sunny and about 45 degrees, so I should have known it was going to be a good day.
I had a chest x-ray, a pulmonary function test, and then got to meet the whole crew at the clinic. Patrice is our nurse for both myself and Annika at the children's clinic, which is nice because then we will see her on a regular basis.
Dr. Nigel Paterson is a gem. He is an older doctor from "down under" With a wicked accent and a great sense of humour!
David and I instantly took to him. His bed side manner is amazing.
He was so positive about my cf, and we all agreed that seeing him once a year was enough as far as treatment for me. He believes that I will be around for many decades to torture my husband...lol! So as you can imagine, all my tests came back negative and clear.
He is booking an appointment with an ENT in London for me for my sinuses , but he seems to think they are not cf related. But we will leave that up to the ENT, since he has more experience in that area. Also he addressed my chronic constipation, talking about DIOS, but believing it is not that either. So he is booking a GI specialist appointment for me, but in the mean time he put me on Domperdione to stimulate my bowels. If it works, it is defiantly not DIOS. The funny thing is that medication also brings on breast milk and ups your production, so I guess I will be hunting for new bras, and Annika will be chug a lugging....lol. Oh well Dolly Parton is an okay look right???
So over all he was a sweet doctor, actually sat and talked to us for almost an hour. And he is the first doctor to listen about my sinuses and constipation and actually do something about it besides say "take a decongestant and a laxative."

Annika is doing awesome. She did culture staph again so we have her on Lavender inhalations again, but she is showing no symptoms of staph, so we are not treating it with antibiotics. We will start Lactobacillus again in a stronger solution.
The goat's whey has really been helping with weight gain. And our homeopathic solutions seems to be keeping her pancreas and lungs working as well as to be expected. Since starting them, we have decreased her enzymes slightly, because we noticed her not pooping, so now we have her on one cotazym 8 for breast feeding and 1 1/2 with other food. That is a big cut back! So we are happy. I got her hawthorn in, but I am going to wait on that to test the waters of these other supplements first.
Annika's doctors are all aware of her holistic treatments.

I have to do a speech for our volunteers function this Friday, so pray I keep it together. I wrote it in the car ride yesterday, and when I read it back to David on two different occasions, I broke down. The memories came flooding back. They are using Annika's montage at this dinner, so that will be nice.

The Great Strides Walk video-A Dance with Annika

Please take the time to watch this little video. It has beena year in the making...lol. Thank you for all your time and help. Join us at The Great Strides walk this year.

Great Strides
Sunday, May 28, 2006, at 11:00 a.m. at the Ganatchio Trail (starting at Sandpoint Beach)
We will be hosting a FREE BBQ, kid's activities, a magic show, face painting,
scavenger hunt and balloons.

http://www.onetruemedia.com/shared?p=387ddef7959cca62c9976

A year later, and it still hurts so bad!

Well today is a cold, dreary day. It has been a very long day. I am sure a lot of my feelings are triggered by the lack of sleep, but the memories of a year ago are being flash backed through my mind. I am really not dealing with it well. This is the day that Annika was rushed from our county hospital to the city's NICU with a meconium ileus. I am so depressed today. Everything seems to remind me of the uncertainty I felt that day....the unknown, the fears, the pain. And knowing now that it was the start of a huge change in our lives., the day cystic fibrosis became an unseen enemy in our lives. I remember seeing her hooked up to tubes and I.V's wondering what I did to deserve this fate for our beautiful daughter. What did the future bring???? Was there a future???? My goodness, I never thought I would feel like this , and remember all those emotions I went through. This disease is who we are now, and I know that Annika has amazing odds working in her court, and I pray in her lifetime and mine they find a cure or a way to live with this disease, but on days like this, depression takes hold, all the what ifs jump into my mind. I pray God gives me the strength to get through this day, and to talk things through with David when he gets home from work. I know a part of me is being so silly with this whole reliving that day. Every time I think of what happened just a year ago, I try to shake the memory. I look at Annika and think, look at her she is doing so well. She is 17lbs and full of energy. Treatments are going well and she is on no medications except enzymes and ventolin, so why am I worried. Enjoy each day, pray for many , many more.
Last night David got a small cake for just us to enjoy. Parker, David ,Annika and myself. We sang happy birthday and Parker blew out the candle. At the end of the song Dave added, "and many more birthdays" Why did that bother me so? We have said that at the end of "Happy Birthday " before. We wishes secretly(to reveal to each other later ) that Annika see so many birthday candles one day that people can tease her that the cake is on fire....lol
I know this is a natural part of healing, but I feel like my nerves are fried! Poor Parker today, he has pushed buttons in me that I didn't even know I had. My parents are taking him for the next two nights, which I so appreciate.
I don't know what I would do without family and friends.
I don't feel like I am enjoying Annika's Dance, I feel like I am destroying all we have worked to over come this past year.

Kim is in hospital

Yesterday morning Kimberly made the decision to go to the hospital because she had been puking all night and was in a lot of pain. Her family came to stay with Parker and Annika because Dave is out of town. Kimberly's mom took her to the hospital after Parker and Annika were all set up with a family member.

Kimberly spent the day in the hospital, receiving IV fluids and meds, having tests run, and feeling yucky. At one point in the day they were suspecting pancreatitis. Last night Angie brought Annika to the hospital to see mommy and nurse. Kimberly had been able to pump out a few bottles of breastmilk during the day and sent those home with Angie. Overnight Kimberly was able to pump out a few more bottles of breastmilk, which Angie will go pick up today, also giving Annika another chance to nurse right from Kimberly.

This morning Kimberly is being taken for an ultrasound because they are suspecting maybe her kidneys are what is causing her to be so sick. They still don't have any test results back yet.

I know this update is disjointed, but I don't have all the details, just the basics of what has been happening. At this point it looks like Annika will be fine with just Kim's breastmilk and I wanted to let the other mommas know that it doesn't look like Annika will need any breastmilk donated, but all your generous offers of breastmilk have been much appreciated. If the situation changes and Kimberly is not able to keep up with Annika's breastmilk needs, then one of us will spread the word and gladly accept your breastmilk donations.

That's it for now.

Annika's Teething Turmoil

Yep that is right, she has been teething, and not quietly I might add! She started with the two bottom, than the two top fangs, yes I have a vampire baby. She just finished breaking through her to top middle ones, and is now working on the two upper back teeth. 8 in total. Two behind Parker at this age.
The problem with cf and teething is the mucous. All our babies get runny noses and rosy cheeks. Mine gets this plus throwing up from the extra mucous, a hard time breathing through her nose because the mucous is so thick and she is constently digging at her ears, to the point I am debating a doctor trip. She sleeps like crap and is only happy with a boob in her mouth, which is pure hell for me. Can't babies be born with all their teeth....lol!

Mommie's trip to H...E.... double hockey sticks !

Well with Annika teething, sleep is a valued thing. Something I am not getting much of. I have now had a sinus infection since June of 2005, and I am on the third antibiotic for it. Just when I think I have it taken care of, BAMM! Back it comes again. I talked to the nurse practioner at London and they are going to do a CT scan of the sinus to see if a surgery has to be preformed to scrap the sinus walls. They seem to think I am colonizing bacteria in my sinus cavity. I don't care what they do, just let me breath again! and sleep again! and remember what I had for dinner last night, again.....lol