The rat race begins

We are off today to do blood work with Annika at Met hospital. When we left the hospital on Monday,  they booked an appointment for Annika in out patient to do a blood test to see if her white blood cells have gone down. If they have not gone down, then they will be admitting her tonight for more IV meds. I hope her results come back with positive results.

Ghost's Galore

So before you start to read this, no I am not high on drugs! Lately the night shift has been acting crazy around here, and I started to ask why. I come to find out that the girls have had some strange encounters of the paranormal kind on the third floor. This shocked me, because often where ever I go, I experience weird things. Like the hairs on my body standing up, extreme temperature changes, whispering, my name being called, flashes out of the corner of my eye, and a general uneasiness in certian places. For obvious reasons, cemeteries always do this....but this peds floor has always sent me into a weird state of mind. I felt it back to when the 3rd floor was labour and delivery. I remember often walking down a hall feeling watched, and during one labour a mom requesting to change rooms because an uncontrollable state of depression and severe loss. She was crying that she was going to loss her baby, she was going to have a stillborn. Once we moved her across the hall, her whole attitude has changed. At the beginning of the week I had asked my nurse where the lady singing lullibies in room 3218 was? I saw her rocking in a chair late one night. Iguess this comment from me is what started the uneasiness. Supposibly room 18 has had a women presence in it for as long as nurses can remember. Often a middle age women is seen in there crying. I described the women to the nurses, and I guess it fits the description. If they can avoid it, they don't put anyone in 18, especially babies, because the room bells, and lights go on and off when there is an infant in there. I told them I saw this same woman in my doorway the other night when Annika was really sick and having 40.6+ fevers. They said often when a child is really sick, people ask about the lady watching their child. I have had many visits from " people" and I never felt scared by this women, I just felt like she was concerned for Annika. I guess there has been alot of activity on this floor since annika and I have been admitted. I have talked to the nurses about our families history with "visits". I had to humour them and explained my experiences on this ward. So I guess it can be said, I feel safe here, knowing that not only am I watching over Annika. But she has another beautiful presence watching over her as well. The funniest thing is I haven't seen her since Annika's fevers have broke. I guess we are in the clear, from all dimensions.....lol

I am just one of those mom's

I sit here awake in an uncomfortable hospital bed in the same room as my daughter, staring at the clock ....focusing on 3:03 AM. Yep, I am just one of those moms who won't leave the side of their sick child. I relate myself to a mother bear. For example, this morning at 6:30 am two white coated lab techs approached my offspring, searching for blood. Instantly , I awake on defense. I bark out orders....which I am sure to these innocent employees of Met hospital...sound remotely like the growls of a mother bear roaring warnings to the approaching danger to her cub. I growl out warnings of protection...stating that our room is  safe room, and there are no needles allowed in our cave. I growl out protests of the early morning visit of mangled steel and plastic, demanding to see our nurse to confirm it is 100% necessary to stab my child for the liquid ruby gold? With returned growls from the lab techs, stating it is their job and they have orders to withdrawal blood. Now anyone who has ever watched National Geographic has learned never to step between a cub and her mother.....apparently these fine employees of Met have not had time to browse the public networks of great educational nature series. After requesting EMLA for my daughter ( thus to freeze the intended needle insertion site) and time to prepare my cub mentally for a needle....the lab techs still tried to get their way. With a massive swipe of my bear claws, and a growl that could wake the dead, they wisely retreated to venture into other caves, until our EMLA cream had time to take effect. A wise move on their behalf. This mother bear now slowly nudged her cub from slumber, and prepared her for what was to come.
After a short venture from our cave, the humbled lab techs returned, requesting access to my child....in which I allowed with my supervision. Two separate pokes, and the blood cultures, CBC's and medication levels where off to the lab to be processed. I thanked the techs for coming back , but reminded them that there is no other danger worse than that of a mother bear protecting the welfare of her cub.
Now you maybe reading this, thinking......okay Kimberly , obviously you have gone a little heavy on the drugs.....but in reality, most of the time I feel like a mother bear. At the hospital I am constantly patrolling my territory looking for dangers. Those may be  viruses, bacteria, fevers, or contaminants. I am always swiping my claws in the air to remind strangers that they are not in charge of my cub....but I am, and ultimately I will do what is best for her, at any cost. I always have my hackles up, preparing to stand my ground, and the best part of being a mother bear is the snuggles and bear hugs I get to share with my cub...because these seem to have the most healing effect on her.A mother bear will stop at nothing to protect....I am just one of those mom's.
So in all seriousness, I am concerned about Annika. After the morning blood tests, she complained that she was tired and went back to sleep. She continued to sleep until 2pm. When we got the results from the morning lab, her white blood cells are crazy, her hemoglobin is really low, her albium level is way of and she is showing signs of infection....but the puzzling thing is where, and what is causing it. The fevers have broke today, but she is exhausted. Why , we do not know. So all day long we hung out in our cave. Thanking the Lord for modern technology and my big fish game account. We snuggled and giggled, and share the most important thing together....TIME. So the plan for Friday is more blood tests, and more waiting.
Roar....Roar....Roar!

Crab legs denied!

Sunday November 12, 2011. We were lucky enough to get our hands on four Spitfire tickets. We decided to go out and catch the game together as a family. It has been a really long time since we did a family outing. The kids were excited, and even though my body was feeling a little run down after several weeks of poor sleep and bowel spasms.....I was really happy about getting out with Dave and the kids. We got to the game, and started to relax ( relax my vocal cords from shouting and supporting the Spits in their game.....lol) The games was awesome. 8-0 for the Spits . Through the whole game Parker was his usual crazy man. Always dancing when the songs would start playing. Annika and him usually try their hardest to get on the video tron. Annika just sat through the whole game, happy, but uneventful. Usually I am telling her to calm down, because she really gets into the dancing and cheering. This night was different. She complained that she was freezing ( even with her and my jacket to cover her). She also mentioned several times that her arm with the picc line in it was killing her. The start of a downward spiral. We asked the kids where they wanted to eat as a treat for dinner. After many attempts to try to convince Dave that Sushi was what he was craving, they finally decided on Red Lobster , because Parker had never been, and desperately wanted to eat there. As the game went on ,Annika shook through each period, and really was way too quiet for my liking.At the end of the game, on the way to the car, Annika begged Dave to carry her because she was really tired, nauseated and her arm was really hurting. Once in the car I hooked her up to one of her I.V meds, and we headed to Red Lobster. She really expressed how tired she was, and Dave asked if it was really a good ideal to be eating out, that maybe we should get take out and get home. Annika objected. She said it wasn't fair for Parker that he missed out on Red Lobster because she wasn't feeling 100%. So we agreed we would eat, than head right home. Both our kids LOVE seafood, crab legs being one of their all time favourites. Annika continued to complain about being cold, and hurting. She had 4 bites of crab......literally. I felt her cheek and realized she was burning up. We paid the bill and headed over to Walmart to buy some Tylenol.....I wanted a dose in ASAP. When we got home, we completed the meds, did therapy and put the kids to bed. Annika and Parker we out cold in minutes. At 11pm , Annie was due for another round of I.V meds, and when I took her temperature it was 100.9, so I gave her some ibuprofen. I called Met hospital peds department and talked to one of her nurses from her last admission two weeks ago. She direct me to take Annika to Leamington hospital if she doesn't get better within an hour, because Met's ER was crazy busy. At 12:30, an hour and a half after giving her Motrin, and 3 hours after giving her Tylenol her fever was up to 102.6. I decided right then and there to skip Leamington and head right to Met. I knew with the climbing fever and arm pain at her picc site, that she would be seen right away. Within 10 minutes of seeing triage, she was brought in to be seen by a doctor. They took blood from the picc, and set up a alternated IV site and took a blood sample from there also. They sent them away to culture for a bacteria in the blood. They also swabbed her, and took urine. In minutes the doctor was back letting us know we were being admitted. Her temperature was up to 104, and her urine was full of infection. The doctors were more concerned about the swelling of her picc arm. They gave her Morphine for the pain, only to her her react to it by having stomach spasms( not vomiting) but extreme stomach cramping and pain. She screamed for a straight hour. It was insane. We didn't get up to our room and in bed until 5 am. We finally both fell asleep by 7am.
I was up only 2 hours later because of my bowel spasms, and my mom had arrived to relieve me so I could go home to pack everything we would need for a weeks admission. The doctor stressed that we would be here at least a week. She ordered a chest xray, to check out her lungs and to confirm the placement of the picc line. They also did an ultrasound of the picc site, with plans to do a dye xray to check for leaks. By this morning Annika's arm pain was down to her hand and up to her armpit. I went home packing, while my mom never left Annika's side. I managed to go over to the kids school. I met up with Parker to bring his lunch and to explain what was going on. I needed to hug him, kiss him, and to tell him I loved him. I need to just hold my son, the kid who always get less attention due to this PIECE OF CRAP disease! He assured me he totally understood, that he hoped Annie got well, and understood that I wouldn't see him this week. Parker is going up with Dave hunting, and we have friends and family staying with the animals at home. He told me he would take lots of pictures, and promised to do his homework. When did my baby grow up? He was really excited about spending time with his dad, one on one, and spending time with Dave's family at the cabin. PARKER IS ONE AMAZING KID! God truly blessed me with an awesome son and daughter.  He goes through so many unfair things because of CF!
When I got back the the hospital, the doctor came in to see me. She told me they found a blood clot. We needed to remove the picc line, and to monitor her closely. She was concerned about the fever, and wasn't sure if the UTI was causing it, because Annika was not complaining about her peeing hurting her. She advised us that her blood cultures would take at least 48 hours, and that Annika needed to finish out her last week of her IV meds. She then told us she was adding another antibiotic that was a broad spectrum, to cover all the cards so to speak. We are treating blindly as of date, while we wait for the cultures. As I type her fever is 40.6.........insane. That is 104 for those not used to metric. I made a trip to the ER tonight, because my bowel was spasming like crazy, so I need to get it to calm down. So here we are stuck in a medical prison until Monday the 21st. Anyone wanting to visit....BRING ANNIE CRAFT KITS, and both of us tasty food. Did I mention I HATE CF?

Goodbye Facebook

My husband tried to preach the negatives of Facebook to me, and I fought him with the positives. Yet when I sat back and thought hard and long about it, I realized what was most theraputic for me Facebook tookaway from me. Writing my feelings, without holding back, and worrying about who I hurt in the process....well truthfully was the most healing for my soul. Facebook made it so easy to post about my issues with life and cystic fibrosis, that I stopped posting to this blog. I neglected the one thing that helped me cope. While I relied on false friends who pretended to be sympathetic, and caring....truthfully the friends that really cared took the time to call, write or email me. Even better, those who really cared visited us all those times in the hospital. I have a lot of anger right now, and that anger is bubbling up and invading my life. My husband , kids, family and friends notice I am sure. I am focusing on things outside my family and faith, and have been worrying about what others think of me. When those individuals would never lift a finger to help me. They judge me, expect me to be a sweet, loving individual to them. When behind my back they push the dagger in farther and farther. It breaks me apart at my very soul. I am becoming someone I don't reconize at all. Anger and frustration is eating away at me, little by little. I thought I was the type to bend over backwards to help others. Always calling, lending out my things, teaching for free, providing support. But all the while , as I am struggling to exist, doing 7 IV's a day so our daughter can have a normal life, not one of these individuals have offered to help. Or to call, or to offer a kind word. They know what our family is going through....yet all they offer is critisim, and gossip. I find that Facebook just fuels this. Silly little comments...and you sit back and look at a status line and wonder....Is that directed at me? And how is this benefiting me? or my family? I know who I was, and what I have become. I have lost the real me....the mother, daughter, friend, and wife I want to be. I hate looking in the mirror because I don't like what I see. This isn't about hips, bumps and lumps. This is about how things in my life are hurting me in so many ways. My appearance, my health, my attitude. I have become a person I am not happy with. So full of doubt, and anger. So Facebook is just the first step in many. Facebook is just the beginning to getting the false friends, bad comments, self doubt in the garbage where it belongs.
Tomorrow is a new day. Tomorrow I start my journey in cleaning up my heart. In doing things that truly make me happy. I have enought pain with the struggles of cystic fibrosis. I have enough pain from the past. I need love, and happiness or I will not survive this journey. I will not survive .
So I raise my imaginary glass ( filled with something strong I am sure....lol) to the heavens. I raise a cheer...."Here is to a new day". And to my friends, and family.....have patience with me, I will survive.
And to my God.....forgive me please. I have strayed.