Annika's Make A Wish Party

Well it has come and gone. We had a decent turnout, and some surprises along the way. Family and friends we didn't expect to see. And the dedicate followers of the diva herself.....Princess Annika. Great weather, lots of laughs, swimming, and good food. I am still doing the tally of the coin collected, but I am guessing Annika raised close to $500 for Make A Wish. I am so proud of all my friends and family for donating their spare change. Thanks to all for coming out. Less than 3 weeks till our very own Make A Wish trip to the sunny state! How Exciting!

Day one at London's Children's Hospital

We arrived into London at 1:30pm and got checked into our hotel room . Ronald MacDonald House was full so they put us up at the Best Western, which was greatly appreciated!. Right away we have pre-admission, then on to cf clinic. Her pulmonary function test doesn't go so well and the doctors are surprised to see a double eye infection, fluid in her ears and incredibly swollen tonsils. Annika's eyes are swollen, so she looks very tired. Actually she is tired, she fell asleep in the car for the first time in a long while. We have an ENT appointment at 10:30 am on Monday. The doctors seem very concerned about her ENT infections, lets pray we can get this under control. She is on the schedule for gtube surgery at 5pm tomorrow, but it will all depend on her little body. The cf doctor changed her meds to a really really strong antibiotic, and she has been eating a lot of ice to help with her sore throat. Hopefully our night goes well tonight. I have Ventolin ready just in case. ARRGGHH! Sweet dreams baby girl, sweet dreams all.

Oops there it goes! G-tube today , gone tomorrow.

What an insane day yesterday was. It all started with Annika coming into the living room crying, showing me her stomach. There was the cutest little hole peeping back at me. I guess this should be the time I remind everyone that there shouldn't be a cute little hole looking at me from my daughters stomach. In that cute little hole should be a perfectly functional MIC-KEY button, or some know it as a g-tube button. The MIC-KEY was MIA. Not a factor I was preparing for this fine Saturday morning, just before Canada's holiday civic weekend. GREAT!
So sending Parker back to Grandma's and papa's, we pack Annika up to head towards London Children's Hospital ( YES children's hospital, please keep this in mind for the ending part of this little diddy) Windsor advised us that they were not equipped to handle a re-insertion of a MIC-KEY on a holiday weekend.
We estimate that the tube fell out somewhere between 3 am and 10 am when Annika got up. She was up at 2 am coughing like crazy, so Dave had done a bedside nebulizer treatment to help aid in her cough. He had remembered seeing the cute little MIC-KEY in that cute little hole then.
So 11am in the morning, we are off to London Children's Hospital ( remember this) and once arriving, we get admitted into the pediatric ER.
We are introduced to our nurse, a short sassy, very opinionated lady called Kim. Do we know any other Kim's like this.....lol. Well let me tell you this Kim makes me look like a saint! This chick was a bitch with a capital "B".
We told her about Annika loosing her g-tube and how we tried re-insertion several times at home before venturing in to the ER. We also advised BitchKim ( oh yes this is her name from now on) that Annika has had a chronic ENT infection since October of 2009. She has been on several oral antibiotics  and IV since then. We let BitchKim know that in the last three days Annika has had fevers, night sweats and her cough has been horrible. Did I mentioned that both Dave and I went through this scenario several times with both her and the attending doctor. So this is a check in a report done by 1:15 pm. Great time. How lovely.....wrong
So the doctor looks at her. She checks out her cute little hole, but doesn't try insertion. She listens to her lungs. Checks her ears, nose and throat. She decides to do blood levels , xray and then g-tube. Ok tests done in the wrong order, but does anyone listen to us. NO! I am now being stared at like I am supreme Bitch mom, and I am enemy number one. Why do you ask......well I ask BitchKim if we can place EMLA on Annika's blood sites. EMLA is a product that numbs any skin it comes into contact with, and is used to help children to handle the fear of needles. No pain, no fear, right? I guess BitchKim hasn't put this simple link together. She denies me the EMLA flat out. "We don't use EMLA here, we do IV's all the time and we are good at it" I then reply, "I don't care how good you are, a needle is a needle and she is not an easy pick, so I would like the EMLA" After the attitude from hell she stamps off to talk to the surgical doctor on call in the ER. Fifteen minutes pass and another nurse comes to talk to us. "It is general practice that we don't use EMLA here in the ER, it can take an hour to take effect" So after reminding her that Annika is not an easy pick, and that this ER doesn't seemed to concerned about getting her g-tube in, I agree to a pick.
So we continue to hold my five year daughter down, who is screaming "I want Harry Potter cream!" This is want we call EMLA at the Hasson household , because it has magical powers. First attempt at IV insertion, blown vein, second attempt, blood collection and then blown vein. This was my cut off limit. I told BitchKim get the doctor, we need to give Annika oral sedation so we can get an IV in and g-tube inserted. More foot stomping and hissy fits....lovely.
Within minutes a new pediatric surgeon shows up, looks at Annika's little cute hole and attempts a g-tube insertion with no numbing or sedation. You can imagine how this went. Yeah, lots of screaming, and my daughter looking at me saying " you told me I would be asleep" Imagine hearing this again and again. Yes I was crying. So finally I screamed...." ENOUGH! " Get her some oral sedation. The doctor looks at me puzzled and stats, "Is this what you want , because it will make things easier? "WHAT! This is where I start to realize BitchKim has a total attitude and high than tho syndrome. She has not been relaying on our requests and concerns to the doctors. NICE!
Wait it gets better.
So we give Annika Nebutrol 90mg, and in minutes she is sleeping like a baby. Yep, out cold. Imagine that a simple swallow of a clear medicine and my baby girl is blissfully sleeping.
So the doctor makes an attempt to insert the MIC-KEY. With no luck, so much time has passed since it has come out the cute little hole. So we have to put in a Foley catheter, size 10 a whole 2 sizes smaller than her MIC-KEY. A temporary fix.We are to call Tuesday, after this blessed Civic holiday, to contact xray so the tube can be scheduled to be inserted under sedation and in radiology by experienced technicians and doctors.
Then the doctor proceeds to advised me if we would have brought her in earlier, there would have been a good chance that the MIC-KEY would have been inserted. WHAT!!!!!WHAT!!!!!WHAT!!!! I told her why did it take 5 hours to get to our bedside. WHAT? WHAT? WHAT? She says. You mean you have been here 5 hours and I just got the paged 10 minutes ago......HHHMMMMM, as I
 stare down BitchKim. I told her we weren't sure when the tube fell out, but we have been here since 1:15pm, considering we didn't find the missing tube until 10 am , and we live 2 hours away, I would guess that was pretty good response time, wouldn't you? Well to say the least doctor was pissed, we were pissed, and now BitchKim is pissed because she knows she is in a crap load of trouble. As we continue to talk to the doctor about future plans for Annika's g-tube, and remind her that we have been here since 1:15pm, BitchKim pipes up from across the room "You did state that it was possible that the g-tube had fallen out between 3am and 10 am" Ok this is where I lost it. I proceeded to yell at the nurse"If your attitude had been better, and you actually stopped and listened to concerned parents instead of fighting them 100% on every decision, than maybe the doctors would have been notified when they should have been!"Then I
 proceed to tell her"You aren't even a part of this conversation "I told the doctor this whole experience was horrible and I have never met such medical staff incompetent of getting their shit together. She apologized for others errors and gave us her personal line to call on Tuesday so her secretary could personally handle Annika's admission for the g-tube insertion. Nice Lady!
So BitchKim disappeared for about an hour, which at first I thought was her lunch, but after she returned and she didn't talk to us much, I am assuming the doctor had a conversation with her.
So we are advised that Annika's xray, blood work, and urine are clear and we are just waiting for her to wake from the sedation.
With a little coaxing, we get those baby blue's to open.
BitchKim comes and tells us that we can leave once the ER doctor comes and discharges us.

So we get introduced to a new ER doctor, because I remind you we have been dealing with this mess now 8hrs. She is a nice lady with a warm smile. She continues to remind us to call Tuesday to book the MIC-KEY re-insertion, and that everything is a go. So I ask her " Do I call our cf clinic Tuesday also to deal with the cough and fevers Annika has been having." Wow! Did I get one hell of a surprised look from her. And of course, on cue, Annika starts hacking up a lung. Then this doctor goes on to tell me that she was not advised of a cough, fever, night sweats, and the repeat infections.
I told her Dr. Price was on call and I thought someone already had called her. NOPE! So this wonderful lady goes off to look at xrays and to talk to Dr. Price.No sooner did she disappear around the corner did BitchKim approach us asking" Is there a reason why you are still waiting here?" Ok now my anger with this chick is almost at the breaking limit. So in response, in the most sarcastic and childlike voice I could manage I reply "Well you see, I have a daughter here lying on this hospital bed coughing up a lung, no correction two lungs. And it just so happens that the doctor was never advised about this issue, even though I told you she has been coughing like this for over a week, running a low grade fever, and having night sweats. So this wonderful doctor is actually going to call our respiroligist to get a second opinion, something you should have done hours ago. So let's just wait to see what the doctor has to say OK??" Boy did I get the death stare. But it was so worth it.
This new doctor returns a few minutes later after talking to the doctor, and looking at xray taken that day and the one on her previous cf clinic. She advises us that she is pretty sure by the xrays and her cough that Annika has micro pneumonia. NICE! So if I wouldn't have asked questions, we would have gone home to have Annika's cough get worse, and cause some possible scarring in her lungs. Stupid nurse.
So to say the least BitchKim is being reported, and we are dealing with a 10 inch tube hanging from my daughter's stomach until we can get the MIC-KEY put back in. So for sure a hospital admission for Annika for the MIC-KEY placement and probably for IV treatment for the cough. What a wonderful ER visit. Welcome to my world of cf. I will keep you posted.