Renee is back at
MSKCC!
She is still weak but feeling much better. She is able to suck the 1st ball to the top of the Incentive
Spirometer now.
Yesterday we hung around most of the day at
NYP waiting for Renee to get transferred to MSKCC. I could not find an internet port there, and they were grumpy about the use of cell phones.
Renee now has her own cell phone, so please call her. She has it lying on her bedside table, just waiting for it to ring! The number is 646-785-4343. She has unlimited evenings (9 pm – 7 am) and weekend plan. The number on her hospital bedside phone is 212-639-4075. She is likely to be here for the next 2 weeks getting over the infection.
That is Ashley in the picture, blessing us with some of her songs when Renee was still in the ICU.
Dr O’Reilly and Dr Steinherz stopped in today. Dr O’Reilly said they were still trying to decide what the next move is including whether or not Martha should still be considered as a possible donor. So far the results of the cousins’ HLA typing has not resulted in a match. They are looking at 10 potential unrelated donors.
Check Renee’s
blog and respond back to her blogs. If you dare you could also check my new
blog. Check out the latest
photos.
I’m hoping to be back in MB next week and my sister Trudy might make it to
NYC to spend some time with Martha and Renee.
------------email from Renee ---------------------------
Hello,
I’m sure many of you, even though you are getting emails from my dad and wondering how I am actually doing. I can’t get into my own email because my room here at New York
Presbyterian does not have internet access. I’ll have to wait to send this until I can access.
I’m at another hospital across the street, and I’m in the pediatric ICU (intensive care unit), which is actually not quite as scary as it sounds. When they told me ICU I was picturing a long sterile white room with unconscious people all lying still, in glass cubicles all hooked up to dozens of machines. It’s actually just a regular hospital room only there’s a nurses station in the corner and you have your own personal nurse at you beck and call.
I went into Urgent Care at Sloan-
Kettering because of (you guessed it!) a fever. In some ways I was almost relieved because now I didn’t have to worry about when or if was going to have to go the hospital. I hate the hospital, but when you know you’re going to have to be there anyway, it is in a way relieving to be there. So I spent the night in urgent care and then they transferred me upstairs to the pediatric observation unit, because not only did I have a fever but my blood pressure was dangerously low. I guess it’s kind of like ICU. I’m not really sure what the difference is.
Anyway, so as they’re checking out my vital signs and attaching monitors and things to me, I get really dizzy and can’t breathe, they told me I had some kind of seizure. I’m not really sure what happened except that I when I woke up there was like 10 doctors in the room pumping oxygen into me and sticking me with needles and stuff. I think I passed out on at least one more occasion that morning. From then on the day was mostly a blur of the same thing.
I had to have an oxygen mask on, and they suspected that my central line was responsible for the infection, and because the situation was so extreme they decided to take it out and put a new one. They also tried to put in something called an arterial line, because it measures blood pressure more accurately than a cuff. Anyway, it took them two tries to get the central line in and many more tries to get the arterial line in (which they never did). But I managed to stable out sort of and keep breathing. Then the doctors decided I would get better care in an ICU ward, mostly because my blood pressure was all over the place and I was needing a lot of oxygen. I guess they’re just more capable at handling a wider variety of problems here or something.
I had to actually physically move to another hospital, but it’s just across the street. I had a short little ambulance ride across the street. I was almost funny the amount of time it took to get me on the stretcher and everything compared to the short time it took to actually drive there.
Like I said, ICU wasn’t nearly as scary as I’d been anticipating, but they did constantly monitor my blood pressure and oxygen, and they had me on a bunch of meds, for my blood pressure, and the inevitable antibiotics. Plus I had to keep wearing this oxygen mask, giving me 100 % oxygen. But I slowly stabilized, and they kept lowering the oxygen levels and the blood pressure meds. Nothing really too dramatic happened here, just slowly recovering from the shock my body had just been through. I mostly slept a lot when not being poked and prodded and asked all kinds of questions. And they seemed to like doing chest X-rays at least once a day. My friend
Ashley was here until Wednesday. Thankfully I had been feeling good and able to do quite a bit for most of her visit, because the last couple days I was so out of it. It was still nice to have her here though. It’s always nice to have at least someone around even if it’s just when you wake up in the night and can see someone sleeping on the chair next to you. It doesn’t feel quite as lonely.
Well, good news, I’m getting out of here today and going to back the regular ped ward at Sloan-Kettering! I’m off the oxygen mask and my blood pressure is stable. I’m feeling a lot better and was even able to get out of bed and sit in a chair for awhile.
On other news…I have finally come out of the dark ages. I am now not only the proud owner of a lap top, (and I have my own
blog), but I also got my very own cell phone, so you will all have a consistent number to get a hold of me. It’s a T-Mobile phone, so sorry all you verizon and cingular users…no mobile to mobile calling. However, evenings and weekends are great, and it had a good long distance plan to Canada. Plus T-mobile was the only cell phone company my dad could find that would sell a phone to a Canadian. Seriously, these people are nuts, even a passport doesn’t count as valid ID unless it’s American. Now, I probably have a lot of your numbers, but knowing me, they’re written on little scraps of paper tucked away somewhere I will never find unless I’m not looking, so I’m going to give you all my number 646-785-4343. I hope to be talking to some of you soon!
Well, that’s it!
Love, Renee
Counts today wbc 0.8 anc 0.2
