When I showed up this afternoon for a quick, fly-by visit, Edward couldn't wait to tell me the amazing news: Keith was discharged! Today's neutrophil levels had increased to 0.4, so although we have a ways to go, they felt that he was on an upward swing. We packed up and left before they could change their minds. Keith couldn't believe that he finally got to go in the elevator, and then was overjoyed to be treated to a car ride AND Raffi.
Opa, Grammy and Aunt Pinie arrived at home virtually the same time we did, and Nana was waiting for us with open arms and lasagna in the oven. Keith felt a little overwhelmed to be home, and is still a little pale and wobbly. Our Pumpkin will be thrilled to learn that he can finally eat all the ice cream he wants as we try to regain the weight he's lost. He keeps asking for a bath, and we are only too anxious to accommodate him - he hasn't bathed in a week! We're looking forward to a relaxing evening with everyone at home. What a wonderful, wonderful early Christmas present.
Keith has to go back to CHEO Friday morning for a blood test, and he will continue to be treated as an outpatient by Hematology until they are satisfied that all his levels and liver enzymes are within the normal range. For now, we're avoiding public places, as Keith has virtually no immune system. Hopefully, he'll recover in time to visit with Santa at the mall!
We all remember (Santa too, I'm sure), how that went last year:
Here's Keith, taken this afternoon. We're so very pleased that he's looking this great, and that his hearty appetite is slowly returning. We know that will only improve his situation. The pediatrician wants to see him walking around, as he is wobbly on his feet, and she wants him to start drinking on his own. They decreased his IV fluid intake in the hope that this will encourage him that direction.
The hematology report wasn't as rosy. His neutrophil count didn't drop, but it also didn't improve. As well, there are some underlying liver issues that need to resolve before he's allowed to go home. They're still working to rule out Microphage Activation Syndrome (MAS), for which he meets some of the criteria, but not all. MAS could have been triggered by the viral infection, which still tops the list of their theories as to what befell Keith. In any case, they believe that should his neutrophil levels reach an acceptable level (his is 0.2, and they should be over 1.0), Keith can be seen as an outpatient at the Hematology clinic. In fact, we were given our first glimmer of hope today that Keith would be out before the weekend!
It was wonderful leaving his room with a smile on my face.
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Unfortunately, today's hematology report wasn't any improved on yesterday's. The neutrophil and platelet counts were exactly the same, or lower. Keith is still perking up very nicely, so we know he feels better; but his body is very much still in recovery mode. With a neutrophil level like his, his immune system is almost non-existent, so if they were to send him home, he'd be laid flat by the next little sniffle he caught. If we allow for a few days for the levels to improve, we're now inching closer to the end of the week, and we're worried that a Friday release is becoming a bit of a pipe dream. Looking forward to seeing Keith tonight, and giving him an enormous kiss n hug.
Much to our relief, Keith started to perk up a little yesterday afternoon. Of course, this meant that he had to sample the tubing, press the "Call Nurse" button, watch Shipping Wars (big trucks!) and try to climb the bed rails. And do a lot of screaming when anyone came too close to him, or when Daddy escaped for a 10 second shower. He desperately - and vocally - wants to go home. All very, VERY good signs.
His ultrasound showed an enlarged liver, and a spleen at the upper edge of normal size, but otherwise, nothing of note. This allows the doctors to rule out the immunological disease. They are now almost fully convinced that Keith had an extremely strong reaction to a very nasty virus. They are still working to figure out what that could be, and a Hematologist will be in later to discuss this with Edward, along with the Infectious Disease Specialist who has been part of the team since the beginning.
The only worrying result is that Keith's neutrophil numbers were still dropping as of yesterday's blood panel. They will not discharge Keith until these numbers show a significant jump, and so we're still in that holding pattern. They took another two vials of blood this morning, so hopefully we'll get some good news about those levels later this afternoon.
Edward FINALLY got a chance to leave Keith for a few minutes, other than when I show up for a quick visit/laundry exchange. A volunteer with a basket full of toys (including a police car!) showed up, and Keith didn't even see Edward slip out. He's on the prowl for a few car magazines, which hopefully will keep our increasingly busy little guy out of trouble. But then, you know Keith.....
Thanks everyone for all your well wishes. We'll be sure to keep everyone posted.
I apologize for the radio silence concerning Keith's illness, but at the moment, there is little to report. Otherwise, I'm getting used to having Edward and Keith in the hospital while I manage on the home front. It's actually a real pleasure and comfort for me to be so busy running after Colin and Evelyn. My parents have been phenomenal in helping me get to the hospital twice a day, although with the work day traffic starting up again tomorrow, my afternoon visit won't be practical anymore. Keith is in isolation, so only Edward and I can see him.
As it stands now, the doctors do not know what is ailing Keith. They have run batteries of tests without conclusive results, and they are continuing their diligent efforts to identify what is making him so sick. All the poking and prodding is extremely upsetting for Keith (and Edward), and this morning, he's going for an ultrasound of his spleen and gallbladder to see if that will confirm a few of their suspicions. Currently, they have two front-running theories: a virus, or an autoimmune disease. I won't go into the specifics of each at the moment, because it's very complex and ever-changing.
As for Keith himself, he is clearly feeling worse and his dropping red and white blood cell counts support this. He spends his day cuddled against Edward with his eyes closed - unless he is protesting the latest indignity. Edward managed to get him to say "Hello Mummy" on the telephone last night, but otherwise he is patently disinterested in talking, eating or playing. His IV is causing him a lot of discomfort and he is very restless.
The doctors believe that the next 24 hours will give them a much clearer picture. If it is autoimmune, the disease they have in mind can only be clinically diagnosed, so we have to wait for the disease to continue its tell-tale track, and the virus blood work to come back before they're ready to start any form of treatment. Given that they're currently testing him for "every virus known to man", as his doctor informed us, this can take time. I won't lie, it's very hard to wait. But they will not begin a therapy until they know it will do more good than harm.
Taken this morning... Keith is in shorts and a t-shirt because he's running around with a 39.2 fever. In this video, you wouldn't know it. But this afternoon, he let us know just how miserable he feels... in case we missed yesterday's post-dinner vomit memo. Perhaps Edward and I will be spared. Perhaps not. Oh, the suspense!
However, as you can see, they still LOVE Raffi. And if you think the table doodling demonstrates an interesting abstract design, you should have seen Keith's face. And Colin's tongue. Thank God for non-toxic markers... and a reminder to me that I should make sure the markers are well out of 6-arms-reach when I try to fold the laundry.
Edit #1:Yesterday late afternoon, it became clear to us that Keith was really unwell. While Edward and I finished making dinner, he sat slumped against the living room wall as Colin and Evelyn played around him. He crawled into my lap - Evelyn came by every now and again to pat him and say "Poor Keef", and Colin tried to tempt him with a stuffed caterpillar, but to no avail.
The situation became clear when Edward put Keith in the bath and called me upstairs. A swath of Keith's left arm was bright red, and it hadn't been when I got him dressed that morning. We had seen this before with Colin and we knew not to mess around with cellulitis. Edward had to run (literally) to pick up our van, which was (of course!) at the garage getting the winter tires put on, and I dressed Keith for his Emerg visit. We drew a circle in pen around the redness, and it had already passed the margin by the time he was seen by the doctor. He was also developing the cellulitis on his right arm. We have no idea how he got it, which is unsettling. Edward and Keith got home at around 1:30 this morning; Keith was bright-eyed and ready to tell me all about his visit, but he eventually drifted off for some desperately needed sleep. We have a course of antibiotics to follow, and although Keith is still feeling pretty poor this morning, we're hopeful the medication will kick in fast, as it did with Colin, and he'll be on the mend soon.
Edit #2: After talking to our pediatrician this morning, Edward took Keith back to the Emergency. He still had a fever of 39, and was extremely miserable. In addition, the cellulitis was spreading up to his shoulder on one side and was spreading down his other arm. It would seem that unlike Colin's case, where the infection was introduced via a puncture wound, in Keith's case, it is in his system and exhibiting itself outwards. We'll see what they say, but his pediatrician wants him on IV antibiotics. Stay tuned! Edit #3: Well, 8 hours in Emerg at CHEO later, and they're admitting Keith. The doctors are not pleased with his response to the IV antibiotics, and they're doubting that it is a superficial skin infection. Please, if you can send a positive thought to our Pumpkin, we'd be very grateful.
This is what happens when Edward and I try to have a real, face-to-face conversation whilst the chidlers are playing happily in the next room:
Evelyn came running to get me, because "Keef is on da table". I heard a plaintive "Stuck, stuck" from Colin. Keith was totally unfazed by his near-tragic brush with the laws of gravity. I really do wonder whose idea this was? Wait... let me guess...
