Evening

Well, we're still waxing...

Mark was awake all day and they even had him sitting up in bed which takes a lot out of him. He responded corectly to all the usual questions and even waved to me when he heard my voice instead of when I stuck my mug right in front of his. Since it didn't look like he had a bath today, I decided to bath him. It was a lot harder than I thought it would be. This tuckered him out so when we reclined him he went right to sleep and I decided to go home early.

Evening

We're WAXING...

This is the good one folks. Mark went down for an x-ray this morning and the residents decided to increase the flow of his shunts. Bingo! This is non-invasive; they just use a magnate on the outside of the neck from what I remember. When we got to the hospital they said he was doing great. I needed to see this for myself, but they were right. He was awake and aware, giving a thumbs up, showing the correct number of fingers when requested (it's easy to cheat, they always ask for two), nodding his head (ever so slightly) and of course his favorite, giving kisses. He even gave one to his dad.

Then he had some range of motion therapy and physical therapy. They showed him how to roll onto his side, pull himself up, and get his lower legs over the side of the bed. Of course, he had a lot of assistance with this. Can you imagine what it must feel like to sit up for the first time (really the second) in almost seven weeks? He had a difficult time holding his head up and his gaze looked a little strange. I think he was also a little disoriented too. This tuckered him out and he napped on and off the rest of the day. We took a picture of this and I’ll send it to Bill Champ (my technical advisor) to post with the other pictures. Some of you thought the other pictures were a little disturbing, so I’m warning you now.

Oh, and they moved his room again. I know that Philadelphia is a union town, but do you think someone actually makes money when they move patients? This was his fourth room in less than 24 hours.

They’re now talking about rehab on Monday. At least they have FREE PARKING!!

Evening

I was so happy when I got to the hospital and saw that Mark had moved to the 7th floor, but who was in the bed beside him but Evertt, (not to be confused with Ernest)! They moved the Alzheimer’s screamer with him! I wonder if Mark ever got any sleep last night.

Mark seemed okay when I got there, but progressed to a very unresponsive state rather quickly. I paged the resident (bold one that I am) and asked him to come and take a look. I also requested a CAT scan which they performed promptly. It pays to be a bitch; I should have tried it years ago. After the CAT scan they packed up his things and moved him back down to the 6th floor where they would be able to monitor him more closely.

Do you think he likes it there so much that he actually doesn’t want to leave?

All four neuro residents came into the room to do another evaluation around 10 pm. Mark was still unresponsive, but the new head head doctor, the beloved Dr. Pandey (who isn’t nearly as warm and fuzzy now that he thinks I’m the head case) said “remember we talked about waxing and waning”? I didn’t dare tell him that I’m not sure which is the wax and which is the wane, so I just said yes. He said they’ll check some other things tomorrow – like his stomach etc. but that we just have to give it more time.

So, on the way home I called my friend Chris to get a better understanding on this waxing and waning thing. She said waxing was what you did to your floors and when it’s waning you need an umbrella.

It’s a toss up between a drink and a Xanax, and I’m just too lazy to make that damn drink.

Morning

Mark is moving up to the 7th floor this morning. He skipped this step last time, but the 7th floor is where you usually go before discharge. I think they're being a little more conservative this time since he's not quite back to his pre-rehab self.

This is like a regular hospital floor, he won't be hooked up to all those monitors - wires and leads getting in the way of great big hugs!

Thanks for all your kind words. We may be asking for some favors soon.

Evening

Mark was awake again most of the day. His progress is so swift, he's almost back to his baseline prior to transferring to rehab. He has begun to wiggle his fingers (just a little), toes, opening his eyes on command and puckering up for a kiss. The thumbs up and the head nodding should be close behind. His head has been more centered and even his eyes aren’t always looking to the right. Now that he found the TV again (he was watching Law and Order tonight) he seemed to take a lot of interest in it.

I heard someone from Bryn Mawr Rehab was looking over Mark’s chart today. I think a transfer would be good for Mark.

Mark’s newest roommate has Alzheimer’s and is so vocal that I asked Mark’s room be changed. I’m not sure how lucky we’ll be with that one. I told Mark’s nurse that this man’s constant shouting was upsetting Mark, and the nurse looked past me to a serenely sleeping Mark. Glad I was wrong!

Thank you for your donations to the Angioma Alliance. Make sure to mention Mark’s name.

Morning

I talked to Amiee this morning and she told me that Mark got some sleep last night. She even got him to squeeze her hand once. Since he's in the NICU I can't see him till noon. Hoping for continued good news.

Evening

I spent about an hour and a half with Mark tonight. He looks amazingly well for just having had surgery. His eyes were open the whole time and focused for most of the time too. He wasn't able to follow any commands but his nurse said it's probably because his brain was still swollen. At least his shunts are symmetrical!

Early Evening

Mark is out of surgery and back in his room. They didn't feel the need to do the endoscopy but just put in another shunt, and replaced the part of the one that didn't work. I guess they didn't find any locculations to break up, so this surgery was much shorter than the others. His nurse said the anesthesia should have worn off, but I know it takes him a long time to wake up. He's not responding yet but the resident said they'd keep watch tonight to see how he does.

It doesn't matter if you pray, chant, rant or rave, just please do something tonight for Mark.

High Noon

Good News! Mark's blood became thick enough for surgery and he will be going down in 15 minutes for his procedure.

So, instead of going to the hospital, I'm heading home because my younger daughter Maureen was in a car accident this morning. She's fine, just shaken up and needs a little comforting. I just need a drink!

Let's home for some great news tonight.

Mid Morning

Mark has been having a problem with his blood being too thin. He had been getting low doses of Hepirin but I'm hoping they've stopped it by now. He's also been getting blood plasma for days to thicken his blood. They feel his blood is too thin right now to do surgery. And if it does thicken later today, it will be too late to schedule him. Hopefully, tomorrow.

His nurse said he has been opening his eyes when she calls his name.

Evening

This is sort of like whisper down the lane. By the time the information that the doctor gave me gets translated by me to you it may sound nothing like what he told us originally and probably with a lot of inconsistencies. But here goes: They proceeded very conservatively today. Instead of the major operation they originally planed they went through the original hole in his head and put in a ventriculostomy drain (like the procedure they performed that first night-which isn’t as invasive as it sounds). The pressure was only 10, which was very very good. So, that didn't seem to be his problem. Then they injected dye into this tube to see if it would spread to all four quadrants. And it didn't, but it did spread from the front to the back on that one side. So, tomorrow they will go in again and perform the same operation he’s had twice before, which is breaking up the locculations (scar tissue that’s preventing the fluid from draining all four quadrants as one unit) and maybe some fancy plumbing. We know that his shunt isn’t working and they may need to place another on the other side, or they may just run another tube and Y connect it to the present shunt. But first they need to replace the original shunt since it’s clogged. Got that?

I thought he’d be sound asleep tonight after getting anesthesia for his procedure, but when we went in to see him, his eyes were half open. I can always tell (yes I can, Dick) when he is focusing and can see and hear me as he was doing briefly tonight. I told him all was well and that we’re fixing the problem and he’ll be on his way soon. I told him how all his friends have been asking about him and how that you all are out there reading this and that it makes me feel less alone, and keeps me going.

My boss has decided that she can no longer be flexible with my hours and by the end of the week I will have more time to spend with Mark. This will eliminate a lot of stress and I look forward to sleeping in!

Evening

This mornings CAT scan showed increased fluid in the brain. They tried to perform a bedside procedure to inject dye into the spinal fluid in the brain through his shunt and found his shunt not operable. Unless they need to perform the procedure tonight as an emergency, they will operate tomorrow morning. They will do another endoscopy when they perform this to make sure there is no new scar tissue that is preventing the fluid from draining properly. Mark has already had two endoscopies so I expect this to go without a hitch tomorrow. They will also make sure there is no infection in the spinal fluid. This operation takes about 6-8 hours and it’ll probably take him a couple of days to wake up. So don’t expect too much in the next couple of days.

Early Morning

I called Mark's nurse this morning at 4:30 and he had already been down for his CAT scan! I guess it pays to threaten. It wasn't read yet, but we won the most important part of the battle. I think the resident was pissed that we didn't do the procedure he recommended, when he wanted to do it. Oh well.

Mark's nurse last night was Toni, and she saw him a lot last weekend when he was doing so much better so she actually knew what to look for. I probably told you a while ago that Mark would always open his eyes when they suctioned him or when he had a coughing episode.

SO, THE GOOD NEWS IS that Mark was opening his eyes when he coughed throughout the night. And not just a little bit, but wide open. I still don't think he's responding much, but I'll take any grain of hope there is.

Hopefully this is the beginning of a wakeful cycle.