When the truth comes out!

Today, I'm in a kind of a bad mood, kind of disappointed again, by the medical staff at McMaster. As I was saying before, about 7 weeks ago, I asked the Dr. to send a requisition to the dermatology department. After the March 1st L.P. I asked Andrea to check and see if a requisition has been sent to the dermatology and the answer was yes, it was sent weeks ago. Today, I asked Andrea where the dermatology department is located in the Hospital, because I would like to go and talk to them personally, because I feel this is ridiculous, it's been 7 weeks since the requisition was sent and they didn't even call to tell us when we had an appointment. She said that actually, after I asked her again on March 2nd, she looked into it, didn't find a requisition and then she sent one 2 weeks ago! I can not believe that they (she) looked us in the eye, time after time and lied to us, telling us that it was sent 7 weeks ago! And now, that she knew we would go there and ask questions, the truth will come out, she decided to finally tell us that nobody even bothered! I asked her a few times who messed up this time and she kept dancing around the answer. I asked her to answer my question and just tell us if the Doctor didn't write the requisition or if the receptionist or the nurse didn't sent it! Well, apparently, it is not the nurse's job to send it, and she didn't find any trace of requisition, so she didn't know what happened. I asked Andrea why she told me 5 weeks ago that the requisition was sent? She said that that was what the receptionist told her. So, I guess by this that the Doctor did write the requisition, since the receptionist knew about it, but she didn't sent it to dermatology! I told Daddy weeks ago that if they did not sent it, they would never tell us. I guess I was right, they only told us when backed up in a corner!

Well, the Doctor that wrote the requisition is the same Doctor who wrote a prescription wrong! You are taking Septra  half a pill 3 times a week, to prevent pneumonia. The bottle Daddy just brought from work had a label on it that said to give it to you twice a day, 3 times a week. Daddy told the pharmacist they made a mistake, but when she took out the prescription, she showed Daddy that it was not her mistake, but the Doctor's. 

Why am I still surprised about all those mistakes? Maybe I am just still hoping that one day, eventually, somebody will actually do their job properly? 

Hypo glycemia scare :(

On Friday, March 9, 2012 I woke you up in the morning and you cried and told me that you were tired of waking up in the middle of the night for corn starch, so I decided that if the glucose level was good at bed time, I will wake up at 3am, check it again and if it is still good, I will let you sleep through the night. We did that for the next 5 nights and everything was great, you woke up smiling, in a good mood, and I was so happy about it.

But then, on Wednesday morning my world came crushing down around me when in the morning your glucose level was 1.8! You were symptomatic, shaky hands, cold sweats. I gave you orange juice and some sugar, while waiting for the pancake. I checked the glucose level again in 10 minutes and it went down to 1.7! That's when I panicked, I called Daddy to tell him to meet us at McMaster and I called 911 and after that I did another check. It went up to 3.4. Oh, the relief! The first paramedic arrived in 10-15 very, very long minutes. When Doug, the paramedic walked in, I was so happy to see him I wanted to cry. I don't think I've ever been so happy to see anybody lately as I was to see this paramedic. I told him that the glucose level is going up and he asked me if I wanted him to give you a shot of glucose. I told him I don't think it's necessary, but to go ahead, if he thinks one is still needed for your safety. He didn't give you one and asked me if I still want to bring you to ER. I said I don't think so and he offered to stay with us for a while to make sure you are ok. Later, 2 other paramedics came and Doug was speaking with them in the living room. When he came in the kitchen, you asked him what are the paramedics' names. He introduced them, Josh and Bill.

I called Daddy, who was on his way and he came home to make sure his Princess is fine. And he remained home for the rest of the day, didn't go back to work.

There were very few times in my life when I felt truly scared and when I think about it, I realize every one of this times is related to your safety. There is nothing more scary in this world than when it comes to a parent's child's life and safety. 

So, since then (it's been a week), I do wake you up every night for the corn starch, regardless of how high your glucose level is. I rather you are tired than not safe. And, besides, there's only four months left of the treatment and then about 2 more until the glucose level stabilizes and we can sleep through the night. 

We love you very much, more than anything in the world and your safety comes first. No matter how tired we all are, we are not going to take another chance. 

L.P.

Yesterday, March 1, 2012 we had a Lumbar Puncture and Dr. Portwine took a sample of Bone Marrow to check it and make sure there are no leukemia cells left. Because of hypo-glycemia, Mommy and Daddy stayed up until mid-night, when we woke you up for corn starch and then we all went to sleep. We woke you up at 6am, did a glucose level check, got dressed and went to the clinic. Last week we asked the nurses about the corn-starch and Zrinka said to give it to you still at 2am, as usual. We didn't take the chance, because we didn't want to get at the clinic at 7am and be told that they can't do the procedure until 10 or so, because of the 2am corn-starch. We also asked that if the glucose level was low, could we go early morning in the ward to have you accessed. She said they won't do that, so we decided that if it was low, we would've went to the ER to have you accessed and then we'd go upstairs. But the glucose level was 4.4, so we just went at the clinic. We were there first, at 7am. We measured and weighed you, you are 12.9 kilos and 93.2 cm. We gave Rena the numbers and a while later Judy came and asked if she could do another height check, because there is a difference of 2 cm since 3 weeks ago. Well, what do you know!? The measurement is correct. You did grow 2 cm in 3 weeks. That is really good, especially since Dr. Jassass said that your growth hormone is a bit low. You were the first to go in the procedure room. It is always so very scary for us when you are put to sleep. When you woke up you didn't want to eat, you just had a spoon full of soup and a couple of sips of water. Vicky came by and sat and talked to us for a bit. Then Lisa de-accessed you and then we came home. As soon as we got home you did eat 2 bowls of won-ton soup that Mommy made for you and then you had a 3 hours nap on the couch. At 7pm you started crying, telling me "Mommy, I'm so tired!", so we did our bed-time routine really quick and by 8:30 the tv was off, lights off and by 9 we were all sleeping! This morning, you woke up really well rested after a long time. Woke up at 8am and spent some time with Daddy, while Mommy went at driving lessons. 

I will stop now, because your dinner is ready, we're having chicken and potatoes in the oven, again, at your request! Your order is my command :) I'd make anything, as long as you eat! And you did ask me once, a few weeks ago "Mommy, how do you make this chicken soooo good?" :) And so would Daddy. Last night he made you hamburger helper again. :) I love you more than anything in the world! And Daddy loves you more than anything in the world.