Friday, January 13, 2012

Fun and scary

First week of January 2012, Daddy took a week off and we went to Niagara. We stayed at the Sheraton and we went at the Fallsview Waterpark. For the first time, I heard you shriek with pleasure and excitement when we got in the pool. You just love the water and the slides! I think we spent a whole hour on the small slide. Then we moved to a bigger slide, and every time you went on it, you said: "Once more, Mommy.' :) 

I told you to go on it as many times as you want, after all, we went there for you to have fun, so do anything you'd like.

At dinner-time, we went on the 13th floor of the Sheraton at the Fallsview Restaurant and we had a very nice dinner and a spectacular view of the falls.
Next day we woke up and you wanted to go at the pool as soon as you had your breakfast. You did wait until about 10, until the pool opened! We spent about 2 hours at the pool, but the one wave pool they had there, wasn't opened yet, so we spent the 2 hours on the slides. Oh, you had so much fun!
The rest of the week we didn't do much, is very cold outside. Just went to clinic on Thursday, and the counts were really low. Neuts were 0.2. It's been a long time since you've been neutropenic, since April 2011, actually. On week one, some sort of a Doctor came in the room to check you and he said that since the counts are good, he will increase the dose of your medication. I asked him and then I told him that I think is too early, because the dose had just been increased the previous cycle. But he increased it anyway. Now you're neutropenic! I'll have to have another talk to everyone at the clinic and I will make it really clear that if they are not qualified doctors, I don't want them in the room to talk to us and much less to make decisions.
On Friday night you did feel a bit warm, but didn't have a fever. At 6am Saturday morning you still didn't have a fever, but at 8am when I checked, your temperature went up to 38.4. I called the Dr. on -call, it was Dr. Portwine and she said that because you were neutropenic we have to go at the Emergency Room to have you checked up. By the time we left the house you had no fever or when we got there. We went in triage and gave the 2 nurses all the information they needed, also saying that you are hypoglycemic. We went to a room very soon and a Resident Doctor came in to talk to us. After we told him what was happening, he asked us what should we do while we wait to see if we go upstairs to the Ward. I told him to take some blood from the port and some from a peripheral vein and send it to the lab and then to phone the results in the ward to Dr. Athaly and she will decide if we were going upstairs or coming home. Leslie, the vein specialist came and accessed your port and got blood from the port, but couldn't get any blood from the peripheral vein. But you were so very good, never moved, never even seemed to be bothered that she was poking you. She then set the IV pump at 20ml/hour and said to Margo (the Child Life Specialists in the ER) that she doesn't remember what Rose, the nurse told her to set it at, but Rose will come in and reset it. 
One nurse came in later and said that all the results were fine, and we can go home. A few minutes later, another nurse came in and said that one of the results were not quite good, because it shows traces of heparin and we should do the test again. They took more blood, and sent the blood to the lab. While waiting you fell asleep laying on me on the bed. The nurse, Matthew came and said that they got the results back and everything is fine, so we can come home. He also asked if he has to put heparin in the port when he will de-access the port.  Ummm... YES! Anyway, he called Leslie in with him and took your arm out of the sweater, and you didn't wake up. I told Daddy right away that you are not OK. Then the nurse took the big sticker off and you still were sleeping. Daddy took your glucose-level and yes, it was down. 2.6. Daddy found a nurse right away and asked for orange juice. You drank 2 small containers and when I sat up with you, you threw up. Probably too much juice too fast. Daddy demanded that the PACE team was called in and the nurse kept saying that she is not allowed to call them and she went and called the ER Doctor. By the time the Doctor came in the room, maybe a couple of minutes later, you began to look better, were a lot more responsive. This was the first time I saw Daddy freak out on anybody! He is the nice one in the family, but I think even Daddy got to the point where he is fed up with them and the fact that we always have to watch them or they will make mistakes!
On Monday morning I e-mailed Dona, the nurse's supervisor in ER and I asked if she would be able to come in 3F Clinic on Thu, because Daddy wanted to talk to her. 
She came upstairs on Thu and we had a long talk to her. We told her all of our concerns, I told her that I have yet to find a Doctor in the ER to impress me. But they are making improvements and slowly hopefully thing are going to get a lot better. We all agreed that the Saturday experience could have had unfortunate consequences and if it didn't it was Daddy's merit for thinking about the glucose level, and not the merit of her nurses. 
Thursday afternoon, around 5 you felt really warm and when I checked your temperature it was 38.6C. I called the Dr. on-call, they paged him twice in 10 minutes and there was no answer. I checked your temperature again, it was 39C already, within 10 minutes. I guess I caught it when it was peeking. I called paging again, they again paged the Dr. and after 10 minutes, the lady at the paging told me that she called his house, cell phone and pager and there is no answer. I even called 3B Ward, but of course there was no Doctor there anymore. I called Daddy and we decided to give you Tylenol ad if the fever doesn't go down, he'd come home from work and we'll go to the ER again. Within half an hour the fever started going down, about 0.1C every 5 minutes. It kept going down until about 11 pm when it was 37.7C again, so Mommy woke you up for some Tylenol and you wouldn't take it from me. Daddy gave it to you and then you were really upset, Daddy walked around the house with you for a few minutes, until you calmed down and then you went to sleep with Mommy. Now you are fine, you're playing with Belle, as I'm writing this. Madrina called today to check, because I texted her last night to tell her about your fever and she was concerned. 
Let's hope the last 6 months of the treatment are going to be smooth, without any of this big scares. We love you very much and we are very, very proud of you. XOXO
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