What do you know--2 posts in a week

I'm sure y'all all know I will only post when I have a meaningful update, so knowing there's a new post should be viewed as positive.

Pete had his appointment this morning for the ultrasound of his lower legs and feet. As I mentioned on Saturday, he's had some swelling in his lower left leg and foot. This has been accompanied by skin that is cold to the touch (not regular cold, but cold). The neurologist wanted to make sure he didn't have any DVT, and sent him in for ultrasound this morning.

We got there early, which I'm always excited about and filled out paperwork. There were some odd questions on the paperwork (like what color do you prefer red, blue or black) and a few minutes after I turned it in, some guy comes out with a tote bag (blue) with a little portfolio thing, a banana and a soft drink inside. We're spent how many weeks and half a million in services there and this is our first giv-y.

Anyway, we're sitting there and I'm mulling my good fortune when this huge guy walks up to me and asks if I remember him. I did not, but he reminded me that he was part of Pete's pit crew when he first arrived at Methodist. He had seen Pete's name on the list of patients for the day and it was familiar so he reviewed his chart. He called Dr. Volpi and asked if he wanted a repeat of any of the brain ultrasonography and if I had a little longer to stay at the hospital they could recheck his carotid arteries and some other things. Yup, we can stay as long as you need him! It didn't occur to me until later that the insurance deductible turns over on Thursday, so whatever tests need to be done under the old one would be great!

The extra tests added about an hour to his time there and it was certainly an hour well spent. Dr. G (not the M.E. the pit crew dude whose name I don't recall) came out and told me that the right frontal carotid is still completely blocked, and the left one is still completely clear. He said the ultrasound on the other arteries revealed the large one on top that had been blocked IS now cleared so he has additional blood flow to the part of the brain damaged by the stroke. This might account for some of the increased function in his left leg that was sort of sudden, but I do not know for sure. Any medical people reading this could certainly help me with that. Dr. G definitely found it to be something extremely positive.

The nurse told Pete that the scan on his legs looked just fine too and that he would be faxing reports over to Dr. Volpi. I'll call his office Friday to confirm. Any changes will be reported as appropriate.

Seeing a member of the original medical team that admitted Pete brought back a whole bunch of emotions for me. I'm sure those will come and go as time goes on, but positive thoughts in that regard would be appreciated.

Merry Christmas!

It came and went so quickly! But it was the 4 month mark on Pete's stroke recovery, which in the grand scheme of stroke recovery is a long time.

He's come so far! This week, we had 2 rehab sessions at TOTS and finally got more sessions scheduled for next week. We have been working on his arm and shoulder and they are loosening up a good bit and he's got the ability to move his left elbow out (away from his body) a bit and that will help those muscles get stronger. He's also able to move his left ankle to lift his foot a bit and the wiggling toes are getting more wiggly. On the whole, I take this as excellent progress. He needs to work on his standing balance and work on standing on both legs, which he has not been doing much of, he's using the right leg for almost everything and that is really no way to walk.

We went to the the neurologist on Tuesday and he's quite pleased with Pete's progress. He has prescribed some medicines to help with the pain that is associated with the feeling returning to his left side. Pete is not one to take medication for pain, but that is not really something he has the option for right now. The doc also told him he needs to get out more, so we'll be doing that. There are some issues with intermittent swelling of his left hand and foot and the doctor wants to rule out any sort of blood clot in his leg by doing a test on Tuesday and otherwise, there is a study going on right now about edema and Pete will be enrolled in that study.

One other thing is that Pete's blood pressure and heart rate are completely under control. The BP at the neuro was 120/70 which is about what they say is "perfect" and his heart rate was in the mid 60's, also pretty darn good. Before the stroke, his BP was running in the "Oh my God" range and his heart rate was all over the place. He is taking no medicine to make that happen at all and the only change was quitting smoking. If you need any more encouragement, I'll be happy to give it.

Right now we have the plague in our house, so we're all sort of recovering from that. For all of you who have followed Pete's story, please know you have our many thanks for your support and prayers. His recovery is progressing well, but there is still a long way to go. We will need you all for a good time to come. I'll try to post more often, but know that if there is no post, it means the status quo is in effect.

If I don't post before then, everyone please have a happy and healthy new year.

Now we have outpatient fun

I have been bad again. So, since we came home. . .

We had a wonderful weekend after Thanksgiving! I got the tree up and Anna and I decorated the front yard. She picked out a blow up Santa and wuv's him! We'll see how she likes sitting on his lap this weekend!

We went last Friday (the 5th) back to the neurosurgeon's office to have the stitches/staples taken out and OMGosh, he looks so good! There will be a couple of battle wounds that stay, but mostly, Pete looks like our Pete. I'll try to get a picture and add it to the blog for those who think I'm crazy. After that, we went to the TIRR Kirby Glen facility, this is their outpatient place. They call it TOTS, for Tirr Outpatient Therapy Center, and it looks a whole lot like the gym at the hospital, and the patients there are likewise in varying degrees of rehab. When we were touring the place, there was a man who was walking with very tentative steps and I told Pete to watch him, because that's what he was going to be doing before he knows it.

He has continued to get stronger and to improve in his cognition skills since his surgery. This sounds punny, but having the bone flap put back in has taken a load off his mind. The day after we got home, he was laying in bed and I told him he needed to move his left leg so I could adjust the covers and he lifted the darn thing right off the mattress! And here we were excited he could wiggle his toes, now he's wiggling all 5 of those little dudes and lifting his leg. He said his abs were weak and of course they were, it hurt every time he worked them. So, I've got him working on that too. He's been emailing like crazy and really his typing hasn't lost much only using one hand. The best thing is how much stronger his left arm is getting. I have a little 2 pound weight that I think he could hold. That's not much at all, but considering 2 months ago, he didn't know his arm was there, much less could he move it, that's pretty remarkable.

Today he went to TOTS for an evaluation. The speech therapy folks were much impressed. The recommendations they received was for 5 days of therapy a week, but they don't think it needs to be more than 3 days. The occupational therapist is going to work on reworking cooking skills. Sounds like a plan to me. The physical therapist has been tasked with getting him upright. Over the weekend, I told Pete that once that happens, I'm going to sit on the couch for 3 weeks and he can do everything.

His mom has been here during the week for like 3 weeks, I don't know for sure. It has been a wonderful experience for us all. Pete has enjoyed having her around and Anna sure does love her Oma.

I can't believe Christmas is coming up so fast! More later.

And, we're home again!

Pete called about 8:15 this morning to tell me the doctor had been in and was ready to discharge him. So, I finished breakfast, took a shower and headed up. It's 2:50 and we just got here. Anna did better than should have been expected being cooped up in the hospital all day long, but as always, she's a trooper!

He looks just great but is absolutely wiped out from the trip home. He was going to go to bed, but instead, he wanted to send an email to his PT from TIRR to follow up on his therapy. He has about 7000 unread messages in his email inbox, so we'll be going through those and deleting all but the junk!

Y'all have a great rest of your holiday. I know I will.

He looks like our Pete!

OK, well, the surgeon came into the waiting room at like 3:15 to tell us that the surgery was done and it went great. So, given past experience, it was going to be about 90 minutes to 2 hours before they called me into recovery to see him. When it was 5:30, I saw one of the hospital "guest relations" people and asked her to run it down for me. She looked at the computer and says, "this shows him still in the OR". She asked if I was sure the doctor came in to say the surgery was over or he was just about to go in. I told her I was and she called the surgery secretary who confirms that the surgeon finished his work around 3:00 and that the resident was closing him up, for over 2 hours. It does make sense to some degree. Put your hands in your hair and see how little give your scalp has, so you gotta know it takes some doing to stretch it far enough to be able to staple it, particularly when you are trying to make sure you don't harm him.

Anyway, I was finally able to see him around 6:45. He was coming out of the anesthesia and was nauseated and had a headache but I looked at him straight on and he looked so good, his head is all back to normal. Well, if normal means having probably 150 staples in it (obviously there's a dressing over the incision) and there is of course some swelling under the scalp, but otherwise, it's the very handsome shape he's been for all this time.

They put him into the NICU, but not the one he's been in before, that unit is full. There is a 6 bed overflow unit on the 3rd floor and that's where he is. The nurse that I wanted to bitch slap was there to take care of him. She didn't remember our history, but she remembered me. I have to say that she is an excellent nurse, but a wee bit too married to the rules.

I came home and gave Anna kisses and put her to bed, she's sleeping like an angel.

It really IS brain surgery

and praise the Lord it is over. Pete did very well and is probably moving into recovery. Once he's all awake, I'll be able to go see him. He'll spend at least tonight someplace I really never wanted to go again, the NICU, but that only stands to reason. There is still a possibility of continued accumulation of cervical spine fluid, which would necessitate a shunt being put in. So, they will do a CT in a couple of days (oy) and see how that is doing.

The surgery took right at the estimated 2 hours, but it took way over an hour for him to be prepped for surgery.

The good news is that when he goes up to the NICU he can show off his new toe wiggling trick. I bet a few of the nurses will be surprised at that development.

Pete was up raring to go this morning. I was too, although I could have used another hour of sleep. I had a punch list before I left and still had to go in 3 times for stuff I forgot. Thank heaven I remembered my reading glasses, because this screen is teeny tiny!

Thank you all for your prayers and good thoughts. You cannot imagine how much they mean to me.

This Monday/Next Monday

What a day today! We went to see Pete's PCP first thing this morning, went to see the Cardiologist after that, went into the neurosurgeons office to drop some records off and then went up to the country to get Pete's mom.

That's how many transfers into and out of the car? He's getting really good at it, although he doesn't always aim well the first time and spends a bunch of time getting himself into the car. About the time he's done with that, I've got the wheelchair broken down and in the trunk. Although this afternoon, Pete's mom and I almost collapsed in laughter trying to get it into the trunk. I tried from the wrong end (the side with the wheels) and it ended up spinning away from me. Then she tried, same thing happened.

But, in reality, he's doing the whole deal himself, I'm truly just spotting him. I do think you might get a chuckle if you considered Pete and I in a very small bathroom, with a bath chair, a transfer chair and an addition to the toilet to make it more stable for him, trying to get him through all those transfers. It was pretty funny if I say so myself. We're just working through the bumps and really, he's stronger every day. Tonight, the guy was just worn out, and was in bed pretty early.

Next Monday, we go back in to have his bone flap replaced. I can hardly wait to be honest. He'll be in the hospital probably through Thanksgiving, but who cares! We have so much to be thankful for this year and it doesn't have to be confined to a specific place to celebrate. Besides, the food at Methodist is good and I have to figure the turkey and dressing will be outstanding. And, then starting at the beginning of December, he'll be back in outpatient rehab at the TIRR Kirby Glen facility.

Oh, one more thing, this evening I asked him if he could wiggle his toes. He said he'd try and he sure did wiggle those toes on his left foot. He said he couldn't feel it or see it, but I told him I could both feel and see it. Manipulating his toes is important for eventual walking, which I feel certain is going to happen.

Anna is doing a bunch of acting out. I feel certain she's more than a little mad at both Pete and me. Pete for not being home for so many weeks and then just showing up, and me for casting her aside for daddy. It's kind of like a reverse of the man's reaction to a new baby in the house, except on a 2 year old's level, which depending n the man is either more or less mature.

We're Home!

After much household preparation and cleaning, I got to TIRR to pick Pete up at about noon yesterday. We stopped for a sonic on the way and then got home in time for Anna to have taken a nice long nap and waking up happy to see daddy.

We've had some interesting experiences with transferring into and out of the wheelchair. Recliners are tough to get out of, and the carpet is a little tricky to navigate, but I have to figure in a few days, this will all be second nature to us and Pete's right leg will get very strong! Right now, he's doing laps around the house. We watched some football yesterday and had pizza for dinner. I was absolutely worn out by the time we went to bed last night. But it was the good kind of worn out where you can snuggle in and sleep.

Anna is very glad daddy is home, but she is a little stressed by the whole experience. Today will be mostly hanging around the house and maybe a few short outings. The wheelchair is much less difficult to get into the trunk than I expected, so it shouldn't be a problem at all, again, in a couple of days.

It's a Blue Norther!

Those of you not from the South are probably wondering what in the world a Blue Norther is, it's when a strong front comes through and you can stand in the front yard and feel the temperatures dropping, sometimes 20 degrees in an hour. It's my favorite kind of cold front and may bring a light frost on Sunday morning.

You're probably not as interested in the weather report as all that.

Coming to Missouri City along with the high winds and cold rain tomorrow morning is Mr. Peter! I know he is very excited to be coming home and we are excited to have him there. Anna seems a little confused by the development, but so it is with little ones.

Today we went to see the neurosurgeon, who says we can schedule surgery in the next few weeks. For me, the sooner the better! We'll schedule a CT scan to make sure there are no surprises and then the surgery right after that. He will have no outpatient therapies at all until the boneflap is replaced, which for me is another reason to get that going.

I also asked for his take home prescriptions. This stroke patient who almost died less than 3 months ago, who left Methodist with uncontrolled blood sugars, a necrotic gallbladder, possible pneumonia and an atrial fibrillation, is coming home with Pepcid and Lipitor. No blood pressure meds or heart meds are deemed needed. We do check in with the cardiologist on Monday at noon-time to make sure that's fine and dandy with him. We have discovered the likely cause for the stomach problems he's been having is the amiodarone, the medicine to control his heart rate. This medicine has been discontinued and his heart rate is fine, his blood pressure is low, and he is less tired and nauseated.

I just got off the phone with his mom and she's gonna take a little vacation to Missouri City for a couple of weeks to stay with him during the day. It could be interesting to watch them dance into the bathroom.

Overall, life is good!

Hoping our luck changes

My cold, which I thought I licked has come back full force and is now in my chest. So, I was trying to get some extra sleep this morning. Getting in the way of this was Alyson who kept scratching the doors to Anna's room and the hall way, so I had to get up twice to run her off, Anna screaming because she needed to go potty, and then the doorbell ringing at 7:15.

I thought it was the kid from across the street with her dog, and I could ignore it. Nope, the bell was run again and then knocking was coming through the monitor. The word "crap" went through my head, and then I got up, looked through the blinds see the boyfriend of one of the neighbors kids and a cop behind him. I open the door, in my night gown, and with my hair probably every which-a-way, and find out that the kid ran into the mailbox. So, let me go put on a robe and some slippers, y'all come in I'll be right back. I think it's safe to say there will be no going back to sleep now. This is the mailbox Pete built for me for Christmas 3 years ago, it's made out of cedar and the materials were very expensive. The only part that is still standing is the base, and I remember how deep he put that in, so it's not going anyplace soon.

I guess the good news is that the kid called the police and came to tell me, he didn't drive off like the people who did that to my sister's. But you gotta know, he wanted to get home before his mother noticed he hadn't come home last night.

Sigh.

One thing I forgot to mention

It's just as freezing cold in this waiting room as it was in August. Just thought I'd help the girls remember that little tidbit.

Like Deja Vu all over again

The sisters will remember this place, Main Building, suite 200, Radiology waiting room. This is where we hung out the day Pete had his stroke while they tried in vain to clear the blockage that was causing it.

Today, I'm here because he's in CT having his abdomen imaged. I believe I mentioned there was some concern that the pain Pete was feeling has to do with the bone flap possibly migrating downward a little too far. They want to check it out and make sure nothing else was going on in there. They don't think there is, but they adopt the better safe than sorry approach.

Pete has still been battling nausea and they are working on the cause of that. It's possible it has to do with the various medications they have him taking. They will probably work on rearranging them to get him taking less medicine and check the dosing. It is hard when you have several medical conditions going on at once and need medications for each one to make sure there are no obnoxious side effects.

We're just 8 days from release. Yesterday, finally, I got some input from his therapists about aftercare and what to expect. They will be spending these last days working with him on how to manage at home. I get a little more antsy every day, because of the changes and challenges that are destined to happen once we're there. Continued prayers and kind thoughts are much appreciated as we make the next step in our journey.

A Blonde Moment to Treasure

Pete's nurse is the sweetest lady. I suspect from her accent and demeanor that she's from the Golden Triangle (Beaumont Orange Port Arthur) and she takes a very active interest in Pete's care. She is definitely one of the nurses I will remember with happiness.

But yesterday. . .

Pete has been complaining of abdominal pain and nausea off and on for a while now. The pain itself has been more pronounced over the last several days and he has complained of pain around one of the incisions.

So yesterday, I go up to the hospital and Pete's acting like he's feeling really crappy. One of the nurses comes in and tells me he's been feeling bad and that I should talke to Gerri about what's happened. I can tell it's nothing horrible, so I head out to talk to her and she says they have done a bunch of blood and other tests and were waiting on results. She said that she got him into bed earlier and was feeling around where he said it hurt. To her shock, she feels this huge knot in the area he's complaining about. It's large and round and well defined and so, she gives him the vicodin she's got on order and hurredly calls the doctor to report this development. About this point in her story, I pipe up with, "that's his skull" and she said, "I know that now, Dr. Shah told me". All the blood work and the x-ray came back perfectly normal, so they're treating the pain.

Fast forward to today, I hit the hospital at lunchtime and Pete's not in his room. I'm confused, but within a few minutes, he's located in the bathroom, where he's complaining of severe nausea and says he really wishes he could just throw up. He gets back into bed and Dr. Shah comes in and starts asking questions and talking to me about this situation (the pain, not the nurse). She starts feeling around and it seems the bone flap has migrated a bunch is might just be rubbing against his pelvic bones. Does that not sound like it would hurt like hell? So, she's calling Dr. Zhang about it. She also wants to rule out any sort of heart problem and will probably run cardiac enzymes tomorrow because of the frequency with which people have heart attacks with few classic symptoms, one of which is nausea. I told him he is NOT allowed a heart attack I draw the line there. We'll see with the neurosurgeon has to say when we have family rounds tomorrow.

At midnight it's 17 days until he's scheduled to come home. Yahoo!

It's been brought to my attention

that I've not updated anything for almost a week. Sooooo, let's see what's the update.

Pete has continued to make progress little by little every day. He feels more steady standing and walking although it will be a while before he's doing either under entirely his own steam. He is finding the chair extremely uncomfortable so he fidgets around a good bit trying to find a good position. Of course, the only good position will be standing up and walking around, so he's continuing to work in that direction. The left arm is still stubbornly doing nothing. Hopefully, that will come with time.

He is enjoying the regular diet a great deal. They are still pushing the protein on him, because as we all know, protein is the stuff of which muscle is made, that and hard work. So he has these little protein packs on his trays that he's supposed to sprinkle on his meals and eat. If he has milk, it works better. He had his 7-Up last Friday and enjoyed the heck out of it.

Today, we took the yellow arm band out for a spin. We went outside, and enjoyed the fairly decent weather. It would figure today would be the first day this week that was not a chamber of commerce day. Tomorrow is supposed to be cool and clear, to give us something back for this nasty thunderstorms this evening.

Speaking of tomorrow, Pete and his group are going to the Galleria tomorrow on an outing. This will be a ride on the TIRR bus and a shopping spree. I will miss seeing him during the day tomorrow but will head up tomorrow after work. One of the girls in his group is in high school, she had a spine injury. It's been a tough road for her understanding that things won't ever be the same for her and accepting that the new way things will be just as great.

They have Pete very busy during the day, between therapies and groups, he's busy for 6 hours every day. Needless to say, by the time dinner is done, he is ready for bed.

This weekend, I guess Sunday, I'm going to make pot roast and take it up there with Anna so we can have dinner as a family. I mentioned it to Pete and he agreed that was a great idea. Could be fun getting all that stuff up to the 6th floor, but it will be interesting.

A new wristband color

This one is yellow. That means Pete and I have the run of the hospital. This morning, I went to TIRR while Pete was having PT and got trained on how to transfer him into and out of the wheelchair. Nothing to it! Mostly, nothing to it because his legs are getting so much stronger and his balance is so much better that he doesn't need much more than a spotter. So now, I can do the transfers instead of having to wait for a nurse or a patient care assistant. I can also go to the hospital with him for tests so we're not spending $700 for that.

One thing I do still need is some training about seizure control. I asked the physical therapist this morning and she said they are required to do it for any sort of head injury and it's just a CYA thing. Then we can go outside in the courtyard. This weekend will be the perfect time because the weather is supposed to be amazing!

I think Pete looks good in yellow. All we have to do now is get rid of the orange "High Fall Risk"band and the circus tent and I'll start feeling a bunch better.

One other cool thing that happened today is that they did the new modified barium swallowing test. To recap, he took one on September 8 and didn't do well at all. He aspirated the thin liquids and didn't cough. He did fine with the thickened liquids so he started those that day. The next time was September 16 and he still aspirated the thin liquids but he did cough and he was ready for ground foods, which he's been doing for exactly a month. I wasn't there for the test, but when I called at dinnertime, he said he had regular food on his tray! Pot roast that looked like pot roast and tomorrow, guess what he's getting for lunch. You got it, a 7-Up!

34 Days and counting down

November 15 is gonna be here before we know it, but still it seems like forever from now.

Putting first things first, Pete's dad's funeral yesterday was beautiful. There was an honor guard with a 21 gun salute and Taps and military honors. People who knew him best spoke of him and the chaplain from the funeral home spoke about those things that exemplified his life. His grave site is in a wonderful place, toward the back of the cemetery where he will have shade from the forests close by and there will be wildlife enjoying the area around him. Though there is a sign suggesting nothing may be planted, I fully expect some of that wildlife might just plant a volunteer come Spring.

This afternoon, after listening to the Texans finally win a game this season, Anna and I went to visit. Pete is feeling low about his progress. I told him that he should not be feeling that way at all, that we have to keep our eyes on the prize and that he is making huge progress. On Friday, I was in physical therapy and saw for myself the progress. He is requiring balance assistance to stand, but it is mostly his own strength. He is retraining all of those muscles in his arms, legs and trunk to do things that he's just taken for granted all these years. Anna was a good girl today and we were able to stay for a few hours before I thought I was going to want to gouge my eyes out. She fell asleep in the car on the way home talking about laying in daddy's bed playing. Today, she pushed him in his wheelchair around the floor and everyone commented how strong and cute she is.

So tomorrow it will be 33 days. Yowzers.

An another matter-Pete's Dad

I got a call from Pete's mom this morning at about 6:30 to tell me that Opa had died in his sleep last night.

I don't know how I'm going to tell Pete, and seriously, this is about enough for me too. I had 2 high school friends die, Pete's sister, then Pete's stroke, the storm and now Opa.

I've Been Lazy

It's been 4 days since I updated anyone. Well, let's see, what's new. . .

I took Pete his phone over the weekend and he's been calling people. He talked to his mom on Sunday and to Monica from work on Tuesday. If you get a call from someone who sounds a little like Pedro, just go with it, it's probably him.

His speaking voice is a little quieter than it was, but he's not mumbling nearly as much, so that's a fair trade off. His mind is very sharp and his wit has followed suit, so prepare to be entertained.

TIRR has a new target discharge date, November 15, 2008. That is earlier than the original date I was given by a few days.

Next week, I plan to go for PT so I can get trained on the transferring in and out of the wheelchair. When they have sent him to Methodist for tests or treatment, they have been taking him by ambulance. The insurance company won't pay for that because it's not an "emergency transport" so I need to be able to do the transfers so that he can go by the TIRR van.

The other reason I need to get in with the PT folks is so I can get a handle on what sort of ambling Pete will be doing once he comes home. Is he going to be in the chair or on a walker. Obviously, our house is not ADA complaint and we could have some bathroom issues if he needs the chair to get around. Unfortunately, my carpenter is a little indisposed at the moment. He suggested today that he'd do fine if he had his airgun, and could shoot nails. Maybe not right away.

Yesterday, Pete and I shaved his face, so the David Crosby moustache is history. He looks pretty darn handsome with a smooth face. Hopefully, it will now be easy for him to keep up with it himself.

On I guess it was Tuesday, he went for PT and had lots of trouble with low blood pressure. They are adjusting medications and are planning to get him up more often so that it's not such a huge change to be standing. The only hard thing is that when he's sitting up for a long time, the helmet gets very heavy and hurts his neck. You just can't make the guy happy. I am confident that in time, the neck muscles will get as strong as they were before he took 2 weeks off to lay around doing nothing.

I'm trying to think if there was anything else, but nothing is coming to mind.

A well deserved day off

I went to see Pete today and he was laying in bed, not really sleeping, but not really awake either. He said when the doctor came in today, he said he was very tired and she said he could have the day off today. One of the residents told him he was being lazy and she told him to be quiet.

Anyway, we watched the Texans snatch defeat from the jaws of victory, watched some baseball and generally had a relaxing Sunday afternoon.

Pete's dad got moved into a regular room today, which is amazingly good news.

Saw it with my own 2 eyes!

He stands! Not under his own power entirely, but entirely under his own balance and most of his own strength.

I went up to TIRR with Anna this afternoon, and the goons from PT were in his room getting him up for PT, evidently, they had to bribe him with ice cream (actually, they checked his sugars and they were low and they're not taking a hypoglycemic dude to the gym). I went down with Anna and he was sitting on this large table thing, with a weighted shopping cart in front of him. They were having him push the cart as far as he could forward and then pull it back. I am thinking this is a heck of an ab workout and may try it. Anyway, Anna got restless, so we went into the kitchen area where they do some of the OT (they will teach Pete to do laundry as an extra perk, as long as they teach him to do it right, I'm fine) and when I came out, he's standing up holding onto the cart. One of the goons is standing on the bench behind him and the other one has a knee against his left knee holding him steady. Anna started creating "issues" so we went outside for a minute. He said that they "went shopping" he and the goons walked around, him pushing the cart, them doing balance checks for him.

He told me he did not feel as balanced as it appeared he looked, that he really had to work hard to stand straight and that he was not able to move the left leg to assist his walking, but I feel certain that will come in time.

His appetite has come roaring back, and he's even forcing down the Ensure pudding they are giving him at every meal. Actually, he says it doesn't taste too bad.

My parents came up to see Pete and to pick up Anna, and after they left, I gave Pete a hair cut. This involved taking his helmet off where he could see himself, which he had not done before. He was surprised at the sight. I assured him he's absolutely the handsomest man alive caved in head or not. He didn't want to shave until after a shower, which I hope he had before bed. But even with just the haircut, he looks a hundred percent better.

They still have him on the IV antibiotics from both the gall bladder and whatever that thing on his back is. That will end on Monday, but bless his heart, his veins are just completely pissed off at him. About every other day, I see him, part of his arm or hand is just huge from swelling, and it's all from infiltration (the fluid not going into the veins but just into tissue), because his veins are blowing out. I sure hope after Monday, his IV antibiotic days are over!

If any of the guys from work want to head up to TIRR for a visit, this might be a good time. He has been thinking about all of you a good deal. He is remembering more and more about the stroke itself. He remembered Carl telling him to go sit down, and that Mike Merit was in the office doorway too (I had not heard this before, so I don't know). He remembered the name of the doctor (well, Dr. Z) at the first hospital and trying to tell him about having seen a neurologist and being told that information wasn't needed at all. I get more and more mad about this every time I think about it. So, you know what, I'm not thinking about it.

Standing Practice

I misunderstood exactly what they were doing with the standing thing. I had assumed they were using some sort of contraption that aided his balance and standing up. Nope, he's standing against the back of a chair. Today they worked on some squatting according to the PT's notes in the "red book".

Pete told me that his right leg was tired and hurt from fatigue--woo hoo, they're building muscle on the man! Those who have not seen Pete probably need to know that he has dropped a bunch of weight. He lost about 20 pounds while he was at Methodist. He's lost a few more at TIRR and while getting the gallbladder removed, so he looks pretty thin. I asked the nurses if he looked that way to them because I'm afraid I'm a mother at heart and am just inclined to worry about people's diet. The concurred.

His appetite was down for almost a week I assume because of the gallbladder disease and surgery. On the good side, he is having much less pain from the incision and is now just saying "I can feel it".

This evening I went to see him and was holding his left hand, twirling his wedding ring. He said he could feel me touching his fingers.

One other big event is that he is remembering the stroke. He remembers being confused by the spreadsheet he was working on and going out to talk to Monica. He remembers the safety team coming in and remembers being in the ER at Memorial Hermann South East. I have told him that this was a bad stroke and that I am glad they did the craniotomy, but I have NOT told him that this was actually a fatal stroke, and that he's alive because of the aggressive treatment he received from Methodist. I'll tell him about this later, probably at the point when he's annoyed at the therapy and wants to just stop it all!

September is over

And I can't say I'm sorry to see it go. Let's see, we've had a stroke and a hurricane and Pete's dad being very sick in rapid succession. There are words you should never have in your vocabulary, "what else can happen?". Something else can ALWAYS happen!

So we started the month having come off the respirator just 2 days before and we end the month with Pete in full swing of rehabilitation. It's pretty amazing that much could happen in such a short period of time.

I had a meeting today with all of his therapists, speech, occupational and physical.

The speech therapist is working on several things all at once. His eating/drinking/swallowing skills, which are improving pretty well. She says she wants to do another modified barium swallowing test next week sometime to see if he finally get a 7-Up. Don't think he's forgotten about that! She's working on the mental/visual aspect of the left side neglect. Working with him on sequencing and reading. She said she was AMAZED at his math ability. I told her he is a pipe fitter, and that his ability to understand complex math and calculate formulas is part and parcel of that job. One thing I can do to help is to bring Anna up so Pete can read her some books. It will help with the left side neglect, and his bonding with Anna.

The physical therapist says he is doing very well with the therapy. They are working on balance and standing. He is by no means standing unassisted or even under his own power, but they are working on it. He's doing much better with transitions from bed to chair and chair to whatever and that's very big progress.

The occupational therapist is working on a lot of the same things as the PT, but adding a bunch of self care things he's not been able to do.

Their biggest problem is keeping him on task. I explained that this is really nothing new, I mean, this IS Pete.

They have an initial discharge date set, November 21. That sounds like a good time, doesn't it? Does to me.

Wow! Progress is Sweet

I imagine Pete would not see this as a huge amount of progress, BUT when I went today, he was sitting up very well and holding his head well, even moving it around. Considering that about 3 weeks ago, he could do neither without a great deal of support. His ability to gauge where he is in space has really improved greatly. He's no longer "finding" things with his hand. He's also much better able to adjust himself in his seat or the bed. That is such a big thing. Originally on his board that tells anyone who's there where he is physically and how to assist him, the transfer instruction was Dependent times 2, lift & pivot. That is now Moderate to Maximum, pivot. This is a huge step and means he'll be able to get himself in and out of a wheelchair very soon, so he can have some additional independence. Every bit of independence is a big deal to his mental state.

He is having more feeling in his left arm and leg. I'm trying to maintain cautiously optimistic, expecting less than I think he might be able to do so that I do not get crushed by disappointment.

They have him on some IV and topical antibiotics for the pressure sore and now that he's moving a good bit more that should not be a problem in the future. He is still in a good deal of pain from the surgery. He is getting vicodin for that, although he is really lamenting the loss of the morphine pump! Sorry, they don't have that at TIRR. He told me they were very hard on him yesterday, expecting him to do a full 3 hours of therapy. I told him I'm glad they aren't letting him lay around and that they better be pushing him. I don't think he liked that answer.

I think that's about it. Anything more happens tomorrow, I'll let you know.

Back where he belongs!

Well, not exactly (he belongs at home), but he's back at TIRR where he can get the therapy and rehabilitation he needs. I am so beyond happy about that. He also changed roommates, well, he's in a room all by his lonesome now, so that's even better.

He's healing up pretty well, but the nurse did find a pressure spot on his back. That's not a good thing, but it can be treated. The good news is that he's been on antibiotics for a good while now, so he should have no infection problems.

31 days ago today

Wow, it's the 25th of September. I can't imagine another month that has drug any more slowly nor passed so quickly. There's a timeline off to the right that gives the most meaningful developments.

Pete is doing much better today. No fever at all and his white count is dropping very nicely. He did misunderstand the instruction about the morphine pump. I told him that it was supposed to hurt, he had major surgery, and that's why he has the blue button to push. All he heard was the "it's supposed to hurt" part and disregarded the rest. I'd say that it is stroke related, but we all know, Pete's a man and it's likely he would only have listened to part of the comment anyway.

Poor thing, though, somehow the IV's were messed up and his left arm was so swollen and hard, his arm bands from TIRR were tight around it. (I'm really liking the idea of the central line he had before, very few concerns about it). The nurse had to turn off the happy medicine pump until she could get back and check it out to make sure it wasn't just backing up, and by the time she got back, his pain level went from "maybe a 3" to "6 close to 7". She hooked him right back up and I gave him a hit--he wasn't going to do it himself. She told him that he needed to manage the pain or his healing would be delayed. Maybe that meant something, but I'm thinking probably not because, well, remember, he's a man.

I did not get to see the doctor today because I was at the office all afternoon, but I'm hopeful they'll get him transferred tomorrow afternoon. Regardless, I'll be heading to Dallas for Robert & Laura's reception on Saturday. Hopefully, Anna won't be a pain on the trip or in the hotel, or anywhere else. I could really use a nice quiet little trip. Hey, I can dream, can't I?

Another new word for the Lexicon-Necrotic

Basically, you don't want ANYTHING in your body to be necrotic (probably not spelling it right, but it's phonetic).

Pete had his gallbladder removed this morning/afternoon and it was necrotic. The surgery went very well, and if you're easily grossed out you probably don't want to read this part, but the good news is that though it was enlarged and pretty yucky looking, when they cut it in half, the pus was all inside. That's where you want it, not floating around your stomach cavity looking for something to make sick. Because it was so well contained, the incision was very small and he should recover very quickly. I am probably being overly optimistic thinking he might be back at TIRR by the weekend, but I can do that every now and again.

He is on his way back to his room now, although I expected he would already be here. I will give him a big kiss for everyone. Thank you all very much for your prayers and kind thoughts.

That's a pretty high fever

That's an understatement, but that's what the nurse had to add sometime last night or early this morning, I don't really remember. It was a little over 103, which for a 53 year old is a pretty good fever.

She gave him some Tylenol the "fun" way, and it took a bit, but the fever broke. Since then he's run a very low grade temp, but they have him on some pretty substantial antibiotics. We're back in Methodist, in yet another area, but this time, we have a fancy private room. I spent the night last night because they were unable to deal with the idea of either a passive or active restraint system. The night nurse was a little frazzled, and I have to guess they were short staffed last night. I am pretty sure I got pretty close to 3 hours sleep last night.

It was very much a Groundhog Day type experience. They kept asking the same questions over and over. What is his underlying medical condition? What medications is he taking at home? What is this hard spot in his abdomen? Maybe I'm confused, are we not at the same hospital we just got discharged from 7 days ago? I told the nurse that the reason I insisted we come back to Methodist is that he had just been here and I wouldn't have to repeat his history. I don't have a list of his medications, which were all prescribed by Dr. Volpi or Dr. Li and should be in the discharge summary. Later the nurse practitioner came in to report she had located the list of medications the doctors at TIRR had him on. I threw up my hands and if I wasn't sure if I was suffering irritation because of lack of sleep or if it was because they were being ridiculous, I would have blown right there.

I talked to a friend who's husband works here and she basically said they were being lazy. I am of a mind to ask for a hard copy of the discharge summary so I can just hand it to the dude tonight.

But back to Pete. He is doing better. They have been doing tests on him for about 4 hours now, and I've gotten some work done. The daytime nurse has ordered him a circus tent so he can be safe in bed. The docs are confused, because if he has an infection in his gallbladder, he should be in pain,and he is not in pain, some discomfort, but no pain. The suggestion I got last night was maybe a procedure to drain any fluid on the gall bladder and defer any major surgery until after the bone flap is replaced, so they are not doing surgery in the general area the bone flap is in.

I heard from Pete's boss today and gave him an update. He wants to come visit and I assured him first that he looks a heap better than he did the last time he saw him (while he was having a stroke) and that visitors are encouraged by TIRR and will help Pete keep his mind stimulated. And Gene, you can't have his desk. Pete wanted you to know that.

Going Back to Methodist :(

I went to visit Pete today at lunchtime as I have been doing, and when I got there, I was told he had a little bit of a fever (just over 100) and was not feeling right. The nurse told me he had vomited once this morning and complained that he had an oogy tum tum. They were taking blood and urine to see how that was.

I just got a call from the doctor at TIRR to tell me she needed to send him back to Methodist for acute care. She ordered an ultrasound of his belly and it looks like he has gallbladder disease. His white blood count was like 12,000 or something insane like that, so he obviously has infection too. This combined is not a good thing, so he's headed back to the source for surgery.

I'm feeling a wee bit weary and numb, but I did finish cooking dinner and ate. Now I'll just wait for my sister to come over and keep an eye on Anna for me so I can head out to Methodist again. Not sure when they'll do surgery, but please pray for him, again and still.

Quietly hanging out at TIRR

Pete has really settled in to the routine at TIRR. They are slowly ramping up the amounts of therapy for him on a daily basis.

He's still doing great on the real food and should be getting closer and closer to a regular diet as we go on. I look forward to the first of the "family rounds" on Wednesday afternoon to get a better idea what we're looking at in terms of a timeline to coming home.

Anna and I spent the whole weekend together, not a single sitter took her. She really seemed to enjoy that, even we did do a couple of stints of shopping which is boring as all get out for a 2 year old, I know. We went to "Daddy's hospital" both days and today, she was sitting on my lap on daddy's bed, so we're moving in the right direction.

Pete's going to be really bummed that he missed the last game at Yankee Stadium tonight. I'm no Yankee fan, but you know how I love baseball, and it's sad to see an old stadium closing.

Not much more to add. I do ask for continued prayers for Pete's progress, and for those among us who are still feeling the effects of Hurricane Ike. Most of the greater Houston area remains without power, for the 9th straight day. Yesterday and today the weather started getting a little more seasonable, which means pretty darn hot with no air conditioning.

I'm Tired

Remember the musical scene from Blazing Saddles? I feel like singing it, I'm tired, although obviously NOT for the same reason.

I worked all day yesterday, went to TIRR at lunchtime and had a big family dinner at my sister's. Anna was a terror by the time we got home and didn't go to sleep until almost 10:00. Tonight, I will try to get her back into her routine, so we can get into a routine with the new schedule. Hopefully, school will be back up and running by Monday, so we can get that part back into line. I don't think I could deal with the manic racing hither and yon for long, not to mention the gasoline shortage and traffic caused by not many lights working between here and home and her and the hospital.

At lunchtime, I found out they are working on all kinds of things at once, among them helping him learn to feed himself again. They let no grass grow under their feet over there! Breakfast took a good while to eat and so he wasn't really hungry at lunchtime, although it looked pretty darn good to me! So, we continue to work on getting Pete back and we make more progress every day.

Vacation is Over!

And it's back to work. Time to become a productive member of society again. I got a call this morning that there was power at the office today, so after the early tests at TIRR, I went in.

We tested Pete's swallowing today. He did great, and he's soon to be off liquid foods and onto a regular diet. For dinner, he had tuna casserole, and all kinds of other stuff. He mostly liked the drinks they gave him. He is really thirsty for something to drink. He can have liquids that are thickened, and amazingly, one of the things they gave him was thickened water. Yup, water that's thicker. They are still worried he might not be able to swallow anything too thin, so it's thickened stuff all the way. I don't care, I liked seeing him partaking of one of his favorite things, enjoying food again!

Other than that, he's starting the gamut of therapy sessions that will be the rhythm of his life until he leaves TIRR, and thereafter until he's achieved as much as he is able. I keep mentioning how much stronger he is. I am not making things up. His muscle atrophy is really heartbreaking, but I know he'll get all that back and more, considering his number 1 job is to work out.

Continued well wishes and prayers are, as always, appreciated.

Day 2-Part 2

I got to TIRR this morning a little after 9 and in the middle of an initial session with the neuro-psychologist and speech therapist.

Something I had really noticed was that Pete wasn't always clear what had happened and why he was where he is. He did not really recall the stroke or anything that had happened since then in any detail. He denied that he had had any surgery, despite the reality that he had. I had explained it to him, but it's hard for it all to sink in I suppose, particularly the part about losing a couple of weeks of your life. So, without being at all scary, Pete needs to be reminded of what all he's been through so that he can work on understanding why it is that he's not able to get out of bed.

There was an initial evaluation by the occupational therapist who helped him get dressed and in a wheelchair. He said he felt better being in his own clothes and I liked the TIRR t-shirt that said, "making miracles every day". His own physical control is getting better on a daily basis. Just put yourself mentally on your back for 21 days pretty much and see if you don't feel a little wobbly, and then consider that part of your brain is not sending the right signals to your back and abdomen to work the way they should.

The physical therapists came in to see what his mobility is. One of the things you worry about with any patient that is in bed for a significant length of time is muscle "toning" (not the good kind) where the muscles tense up. Think about the person you've seen who's hand is in a fist drawn to their chest tightly. This is toning and is very hard to reverse. Pete does have some of this on his left side, but not a significant amount. He is still quite limber. He sat for a good while while the speech therapist had her way with him.

The speech therapist will do multiple things, including working with is physical speech, evaluating his mental capacities with regard to short & long term memory, sorting and ordering, and following instructions, and right now very importantly, reteaching his mouth, tongue and esophagus to process food so they can get rid of the need for any sort of tube feeding. She went through a mess of tests and Pete did amazingly well. He is quite oriented to time, knowing it was Tuesday, in September, in 2008. He didn't know what day it is, but that's pretty understandable. She read him a story and asked some questions and he did remarkably well remembering the details. Much of this he would have done the same before as after.

One thing that was quite remarkable to me is the extent of the left side neglect. I had explained it to people only in a physical way. He was neglecting the left side of his body the way you are neglecting your Siamese twin. That person isn't there, so why are you even talking about it. His eyes and head tend to look right. If you ask him to move his left hand, he moves his right hand. it is as though the left side does not exist any more than your Siamese twin exists. However, the syndrome goes farther. The speech therapist had him read some sentences. He did not read anything on the left side of the page. She asked him to sign his name and write a sentence. He did this on the top right of the page of paper she gave him. His signature is very similar to the signature he had before the stroke, if a little less compact. So we'll continue to work on his left side, or else paper will not get very well used.

The sentence he wrote at her request was "arm hurts". He told her that it felt like his funny bone had been hit. I almost fell out of my chair, because that's exactly what he said in the ER during the stroke itself. He did have some small movements with his left arm, and while he was trying to push on it for the occupational therapist doing her work, I could see flexing of his muscles. He's also paying a bunch of physical attention to his left arm and hand, holding onto both a good deal of the time. I take all of this as a very positive reaction, and ask that you all continue to pray for Pete.

Tomorrow, he will have a repeat of the modified barium swallowing evaluation to see if he's ready for "real food", which will be very pureed for a while until he gets better and better. I see good reason for hope.

Also, prayers for all the local people who have been so affected by this hurricane. There are still close to 70% of the 5 million plus Houston area residents still in the dark. We have had a very early cool front giving us very pleasant temperatures, but it could be back into the 100's again quite soon.

The Next Big Step--2 of them actually

We got transferred to TIRR today. Didn't get into a room until almost 6:00, and by that point I was so tired I couldn't see straight. We'll start tomorrow with evaluations by occupational, speech and physical therapists to see what they think he can do in terms of recovering use of the neglected side of his body. I have immense faith in the program and in Pete to work hard to get himself moving.

Of course, that's the secondary thing that happened today. The best part was him complaining of pain and tingling in his left arm. Yup, you read that right, the left arm was having pain and tingling. He said he noticed it when I was working his fingers, hand, arm and shoulder like the PT had told me to do. He also turned his head to me without me saying anything to him. While I was pulling his elbow in and out, he pulled it toward his body a bit. Later, when a nurse came in to draw blood, and decided to take out the IV line, she had to pull the taped dressing off his arm, taking off a good bit of hair with it. He was pulling on that arm, wincing and otherwise going crazy over it. I tried to explain to him what an accomplishment that is, he didn't seem to think so, but I think that's part of the neglect thing.

Because of his fall yesterday, I was very much unable to sit quietly during his OT session this afternoon. So, I went out into the waiting room for a good while to let them do their thing without me hovering and drawing in quick breaths of worry.

I was very emotional at this next phase in Pete's recovery. Three weeks have passed since I got "that" call from Monica that Pete was not himself and it seems like forever ago. How quickly and unexpectedly things change! I could tell Anna tonight that daddy's "boo boo head" was getting better.

Not ready to get out of bed yet. . .

Unfortunately, Pete forgot about that. He has been getting stronger and stronger every day and his mind is working double time. Unfortunately, some of the thoughts are not exactly as rational as they would be otherwise, and he got out of bed today, and tried twice more. I was not there for the first attempt, but was for the second and third and was able to get the nurses in there with the jacket that will keep him in the bed. I hate that they had to do that, but it's the only way to keep him safe. Thankfully, it would not appear he hurt himself, but I don't even want to think about what could have happened.

This does underscore that he is ready ready ready for some rehabilitation, and hopefully, he'll be discharged to TIRR tomorrow or Tuesday at the latest. Of course, he doesn't see any reason to move him anywhere.

I'm a little spent from the weekend, with the hurricane and all--so maybe I'll post some more later. Suffice it to say that the Beins household came through all but unscathed. The wind was scary as all get out, we lost power for just under 24 hours and the yard is a bit of a mess, but nothing bad happened and I am certain Anna knew nothing of the stress. We are truly blessed.

Hopefully, all of you came through with flying colors as well.

TIRR, 7-Up & Ike

Yesterday, I went to visit the facilities at TIRR, which is the Texas Institute for Rehabilitation and Research. This is a place I remember seeing commercials for during the late night news when I was a kid, so knowing how old I am, that's a while ago.

The facility is amazing, they have patients with all sorts of neurological issues, from brain injuries and strokes to spinal chord injuries to neuro illnesses. The patients are at all levels of functioning and their goal is to lead the patient to the greatest level of independence possible, regardless of what that is. They will keep him busy from 9:00 a.m. to 4:00 p.m., so my "vacation" is over, I'll be back to work at least most time until he's out. Then we'll figure out what to do, which will depend entirely on how he does. I feel confident he's going to do great, he's very self motivated, and if he could just get a 7-up he'd be a happy man.

Speaking of the 7-Up, Pete wants one, badly. In fact, he's a little fixated on it. He told his mom and dad yesterday that I wouldn't give him anything to drink. For the record, I wasn't allowed to, he'd had a procedure in the morning and I couldn't sit him up! For the record also, he's not allowed to have anything that thin to drink just yet. I also asked him, in hurricane preparation, if he'd tacked down Dusty's dog house, and he said, yes, with a Styrofoam cup. So, he was pretty worthless in the hurricane preparation yesterday. But he was very cute, and he is progressing on his speech and independence. He's going to do great.

Speaking of Ike, well, it's caused some delays. He would have been transferred to TIRR this afternoon, but obviously, they're not doing any transferring today except on an emergency basis. So, it will be early next week. Pete is in the safest place possible. The hospital is designed to withstand a Cat 5 hurricane, the hospital staff has a well hewn system for hurricanes and they have resolved the serious problems the system encountered during Tropical Storm Allison. There will be no more hand bagging intubated patients while carrying them down the stairs to evacuate them to other hospitals. The staff themselves are as cool as cucumbers, they have been preparing for this for some time. Like I said, Pete is very safe. They would have let me stay with him, but not Anna so I wasn't going to do that. They would probably have let me have Anna, but she would have been awful in a storm, I think it's better that she's here with me.

Keep one of the other patients in your prayers too, she had a baby last week, and a stroke on Monday. There's a note on her door saying that nobody is to mention the hurricane to her because she's so upset.

More later--and I've lost power 3 times tonight, but not recently, and I'm hopeful I'll be ok tonight.

Just another boring day

So happy to have one! I actually even got some office type work done today in addition to sneaking out to the nail place t get a fast fill.

We got a visit from all the therapists today, and Pete sat up without sending his heart into craziness and was able to drink some thickened orange juice without any trouble. See, I told you it was boring. Probably on Thursday, they will replace the NG tube he's got going now with a "Peg", which is a much more efficient feeding system he'll use until he can get all his nutrition orally. They can't do the surgery until Thursday because he needs to be off the blood thinners for at least 36 hours before he can have any surgery. These doctors are so conservative.

Once he's had that for 12 hours, off he'll go to TIRR, so that should happen on Friday. The worst of that is that I'll be doing his laundry again because he'll be in his own stuff there. I guess I can deal with that. TIRR is the most fabulous place ever for severe brain and spinal cord injuries and other neurological illnesses. He'll be inpatient for 4 to 6 weeks there and then come home. Well, not straight home. Dr. Volpi thinks it would be a good idea to have the brain flap returned to it's proper place in Pete's head before he comes home, so he'll have surgery and then probably another couple of days in the hospital before he comes home.

When I got into his room this morning, his right hand was in this weird looking glove, that kind of looked like a boxing glove with finger holes. He's been pushing on the part of his head where he has no skull and evidently, they don't recommend that. Not much they can really do about it, but they will do what they can.

I went to get Anna this evening to take her up to visit and she was still a little standoffish, but Pete does not seem so very upset about it and that's a positive thing. We'll try again maybe Thursday night.

Jones 8--an Update

YAHOOOOOOO!

We're there! Right now it's J809, but I expect that to change as soon as a private room opens up. The staff pointed out my insurance will only pay for a semi-private, which kind of gets a "so" out of me. I want to be able to take Anna to visit her Daddy without her disturbing his room-mate.

They have changed the heart medication to Toprol, which seems to have gotten the heart rate under control. They did the modified barium swallow test today and he did very well sitting up without sending his heart into chaos, but not quite ready for a steak and baked potato just yet. The speech therapist did give some suggestions of how I can work with him and we'll get going on that tomorrow. Just remember with muscles, you don't use em, you lose em.

I spoke also to the rehabilitation doctor who said he thought TIRR would be a perfect fit for Pete and as soon as he's medically able to be moved (probably end of the week or first of next) we're at TIRR.

Can you believe 14 days ago right now, I was waiting for him to come out of surgery and go into the NICU for the first time? I can't. I was every emotional when they told me he was going to the real room today, which I took as an indication that the danger is over. It was a different conversation with God in a different chapel today. Good times are a comin!

Jones 8

This is our interim goal. That would be the 8th floor of the Jones Tower at Methodist, the "regular" neuro rooms. This depends on a couple of thiongs over which only God has control. First and foremost, that he does not go into A-fib when they sit him up to do the modified barium swallow test this morning. He also needs to do fairly well on the swallow test so he can start to get some of his nutrition from food.

It is modified because he's not really doing barium, he'll be swallowing things in sequence, water, thickened juice, jello and then something solid to see what he does on X-Ray. I will be there for that so we'll see how it goes. They have increased the heart medication he's taking so that should do the trick. Fingers crossed and prayers being said.

He drew the "fun" nurse today, and you gotta know when one of the others came in to ask if Anna ever came up over the weekend, there were some crackles in the air! That's fun, I guess.

The Rest of the Story--Saturday

Yesterday afternoon, I went back up to the hospital. His mom, brother, and some cousins were going to go visit and my parents were coming to see Pete and then take Anna for the afternoon.

You should have seen Anna's face when she looked up and saw Oma there. What a pleasant surprise for her! Pete had a nice visit with family and Oma was thrilled at how good he looks. They have completely taken away the special infuser that had the pain medications in it, so he'll be getting those PRN. After they left, I was taking Anna for a little walk, and what do you know, as soon as we get off the elevator on the lobby floor, up walk Granny & Granddaddy. Poor kid must have wondered why all these family members were hanging out at the hospital!

The physical therapy people were there again and sat him up, which sent his heart into fibrillation again. However, it was gotten under control much faster than before and he was much more steady sitting up than he was even earlier this week. No naughty words for the PT either, so things are looking up.

Nurse PITA was in a much better mood in the afternoon. Evidently, Pete used his voice to tell her that pissing ME off was not a wise thing to do and she seemed to take that to heart.

We called before bed last night so Daddy could sing along with us on Anna's night night songs. Both of them seemed to like that so we'll do it again another time or 5.

OK, off to finish cleaning the house for the first time in 3 weeks!

I learned a new word today

An "Intensivist" is the doctor that wanders the ICU taking care of any weirdness that pops up during the day. I had heard it a couple of times and thought they were talking about the character of the doctor who was there (because both of them are pretty intense). So the gentlemen formerly referred to as the "floor docs" will now be known by their actual specialty name, Intensivists.

I reserve the right to be random from time to time.

So Today I'm Mad

I mean, I'm really mad, and if you're from Texas and remember Eddie Chiles, know I'm going through his whole routine right now (Eddie Chiles was an oil man who was offended by wasteful government spending and bought commercial airtime to talk about it.)

Anyway, over the last several days they have been talking about moving Pete to a regular floor but can't do it because they need to get his heart under control first. I have told them I am not at all in a hurry to do that, the only reason I wanted that to happen is that I think it's very important that Anna get to visit her daddy and vise versa. So, yesterday, his nurse told me that it would be just fine if I brought her up for a short visit and that it would do wonders for both of them. So, this morning, at the 8:00 to 9:00 visiting hour, I took Anna up there. I didn't tell her anything of what we were doing until we were in the parking garage.

We do all the elevator button pushing, get to the floor, use the Purel on our hands and walk thorugh the automatic doors, where I'm accosted by his nurse who says no visitors under 12 are allowed. I told her I made arrangements and was told it would be fine to bring her up there, whereupon she informed me that she is the charge nurse (well la ti dah) and that it needed to be cleared with her first and exactly WHO had I talked to. I told her and she starts telling me about how patients can't be gotten upset and I almost blew right there. How dare someone, who has never met me before and who I've never even SEEN on the floor, suggest I'm going to do anything that would not be good for Pete?

She put us out for a minute because I guess, you know, with all the responsibilities of being a bitchy charge nurse, she forgot there's an 8:00 a.m. visiting hour and she hadn't gotten Pete all arranged in his bed. While we're in the hallway, one of the floor docs walked by, said hi to Anna and, "Are you here to visit Daddy? That will be a good thing!". All of the nurses I've gotten to know over 2 weeks come up and are all excited to be able to meet the Anna of whom they have heard so much.

So they're done, we go in and she says, "Five minutes, you can't tire him out". She got "the look" out of me. So we were there for a few minutes, Anna said, "Daddy boo boo head" a few times, she pulled up her shirt so he could tickle her, but was a little standoffish with him. I think it's a combination of her being angry with him for going away for 2 weeks, being a little off put by Daddy being in bed and I'm sure feeling the stress caused by the nurse. We left, and I was so upset when we left, all of the remaining plans for the morning, including taking a ride on the train to Hermann Park on a morning that is beautiful, 68 degrees and and dry, just went by the wayside and I drove home in tears.

Later, there will be lots of visitors and I can bet there will be trouble. Because after everyone leaves, and I want to sit and needlepoint while Pete sleeps, she's going to try to put me out again. When that happens there may be a clash. And, trust me, I've rehearsed what I will say, including a suggestion that she find a CME course on the subject of sensitivity, patient psychological well being, how to handle families and how to basically not be a complete pain in the ass. Yes, today, I'm cussing and when I go up there later, my eyes will still be puffy.

And maybe she needs to re-read the visiting rules. It’s nobody under 14, not 12.

Tachy

Nope, that's not a misspelling, it's one of the 75 different alarms that came up on the monitors today, while Pete was having so many arhythmia's that he ended up using up all the paper that prints them for the chart. Tachy is short for Tachicardia, which happens when the heart rate is 175 or more.

The day started just fine. I walked in and saw that the infuser was down to one attachment and that was just for medications (at one point there were 5 separate ones). They were trying to get him off the infusers altogether so that they could move him to a regular room. All that was just fine until the PT folks came into the room and sat him up for maybe 10 minutes. He had done ok with this just yesterday, but today is after all another day. When they went to lay him down his heart started doing all sorts of weird stuff, that I just figured was false readings because of all the activity associated with getting him sitting up and rearranged on the bed. I thought that until I looked over at his nurse who was standing there watching the monitor screen like a hawk. During the hour or so that we watched it, his rates were between 79 and 180, sometimes going from 79 to 135 with nothing in between. There is a different alarm when it reads Tachy, and it's a little more, well, alarming. Dr. Volpi came into the room to check on him just as the floor doc was working pretty hard to get his heart rate stabalized. It was suggested that he stay in the NICU another couple of days since all that got this going was sitting up for 10 minutes. Dr. Volpi concurred and changed his release order.

When I went this evening, his rates were all back to normal and we had another attachment for the infuser to give him some IV heart medication.

I bought a little bitty recorder that will do a 30 second tape of Anna to take to Pete. She sang her abc's on it and said, "I you daddy" at the end. I played it for him when I got there. Poor baby is running a fever and has some sort of sinus infection. After she's over that, I'm going to see about taking her to the hospital and sneaking her into the NICU to visit Pete. I think he needs to see her and she needs to see him. I have told her that Daddy was at work, but then he got sick and he's getting better. I think she's fine with that.

Continued prayers and well wishes are much appreciated. Barring something else happening with his brain circulation, it would appear the stroke has resolved itself. The hard work now will be rehabilitation, and considering sitting up caused all this havoc today, it will be a good bit of hard work, but worth every second. I believe this will be much like going on a diet, you work really hard for a while before you see any results. We need to keep pulling for Pete to keep working. I told the PT's that I'm not one of those obnoxious spouses who think they are "being mean" to him, I know they need to work him hard in order to bring him back to himself. I have no doubt Mr. Hardhead will not let any of us down. After all, his mind is completely unaffected by all of this, he is still Pete. Now that's a good thing.

It's a Marathon Not a Sprint

I've heard this a time or two. Lest I wear myself out, I decided to spend the day at the hospital today and not go back this evening. I just called the hospital and Pete is sleeping anyway so it's a good deal.

We had all our therapists there today, speech, occupational and physical. The speech and physical therapists have each been branded "a pain in the ass". I suppose so, they are making him work, although the speech therapist did give him a bit to drink today. There was talk of moving him to a "real room", but they thought better of it because of worries about him not being able to swallow. Until that, he is not recovered enough to do so. Patience Kristy!

I am overwhelmed by the well wishes. Keep em coming, Pete and I feel your prayers with us.

Three steps forward, One step back

You gotta expect that things just can't go great everyday, particularly when you're dealing with stroke, but hopes and expectations aren't always in line with each other.

Nothing bad, in the grand scheme of things, but it is a setback. I got into the NICU this morning and he had the oxygen mask on again and this time not for a breathing treatment. The nurse told me that he had some irregular heartbeats last night and that they have increased his oxygen to help him with that. His "stable" situation is no longer stable. The doctor told me it was an atrial fibrillation and that his heart rate was up in the 160's, but that they were fortunately able to get it under control with some medications really fast. Evidently, some patients take a good deal longer to recover from the thing than he did. So, we're probably about 2 days delayed in getting into a regular hospital room, which is disappointing, but considering all the progress of the last several days, I should really not let it affect me at all.

The medications are making him a little subdued, which doesn't make me too happy, but I'm sure it isn't making HIM so happy either.

I talked to a child psychologist this morning about Anna. She assured me that as long as I'm acting like Pete not being there is not a big thing, she'll mirror that, but that I might say that daddy got sick at work and he's staying in the hospital while he gets all better.

There might be more later, you just never know, right?

Like I said, things change fast :)

I got to the hospital today around 11:00 and met Dr. Volpi thre. He tells me that he would like to see Pete in a regular room tomorrow. You read that right.

He's got good intercranial pressure and he had almost no drainage when they clamped off the shunt; his oxygen saturations, with very little support, are in the high 90's to 100% and he's almost done with the pain medications. A week ago tonight I was wondering what I was going to do without him, and now I'm just feeling like I'll be sleeping against His Furriness before I know it.

The only thing he's going to have to work on is speech and swallowing. Until he can swallow, he's not leaving the ICU, so let's pull for something like that tomorrow when the speech therapist goes in. I asked him tonight if he's feeling stiff from just laying there and he said yeah, so I rattled the PT cage too. The gauntlet for a good while now will involve exhausting rehab and therapy.

That's it for now, and I think that's plenty.

Sunday

I really, seriously expected that I would be getting a phone call from the nurse telling me that they put Pete back on the vent overnight on Saturday night. When I got up and there was no such call, I was very pleasantly surprised.

Calling his mom on the way to the hospital was a good experience, since I had good news to share. When I got to the hospital, he was not only no longer intubated, but the oxygen mask was gone and he was getting a supply through a nasal canula. The incision from the craniotomy was starting to droop, which means his brain is shrinking and the cervical spine fluid is getting progressively clearer.

He was snoozing, so I sat down to read my book during the early visiting hour. It was a very relaxing thing to do, almost like a normal morning, except we'd be in the same bed.

The nurse told me he's communicating very well, something happened to his oxygen canulas and he rattled the side of the bed until she came over to fix it. I assured her he said thank you in his head. I went to mass in the chapel (no excuse to miss when all I have to do is get into an elevator!) and when I came back, he was sitting up in a chair. Well, not exactly a chair, but a bed that will make itself into a chair. It's important to get gravity doing its job to help keep clots from developing in his legs. He sat up for a good while, and was ready to get back into bed.

I picked up Anna from Kerry and she had made a little sign for Pete with Anna's handprints. It was very cute and I hung it up on the IV bag holder that is on a track around the bed so he can look at it wherever the move him.

By the late visiting hours, he was able to talk with a little voice behind it. Again, the NICU was quiet, like it always is from 8 to 10. I asked him a couple of questions that had him shaking his head no and then I asked if he wanted me to take all my clothes off and he nodded and smiled.

A little something about Friday

So I skipped Friday and said I would update--if you haven't read the post about Saturday (red letter day), be sure to go check that out, because it was a good one.

Friday morning I walked into Pete's area and his eye was all back to normal. He looked so much better I couldn't believe it. In the afternoon, he got a little more puffiness, but it was not anything like on Thursday. The nurse said that the cooling mattress really did its job and had Pete a little shivery, so she gave him some Demerol. I guess I never considered Demerol over a blanket, but I guess I'm weird that way. The tube feedings, coupled with no exercise and the general shock to the system that a stroke entails, have meant his sugars have been pretty high (well, we all know he's sweet enough, right?) and they are giving him insulin. Once he can get some activity, he'll do better.

On Friday, he was finally pronounced, "stable" and they started weaning his use of the ventilator. He stayed on the lower dose of the Propofol so he was alert for a longer time at a time during the day. Eyes open and making some eye contact with me and that's a good thing.

A Red Letter Day!

I have been writing a day behind, but not tonight. I'll write about Friday after this. Lots and lots of big changes today.

We got rid of some big equipment late this afternoon. The ventilator has been evicted and one of the infusers is gone too. Pete has been mostly breathing on his own since sometime yesterday with the vent only kicking in to make sure he didn't have a problem. And they have been weaning the propofol off since Thursday afternoon.

They sent us out for the extubation and the doc came after it was done. I have to say, what came next was a good bit more traumatic to me than the entire idea of his having a stroke in the first place. Watch them stick a piece of plastic tubing down the nose of the man you love and then do it again, and you'll know what I mean. Obviously, they were doing this to get all the fluid out of his lungs to keep him from getting pneumonia and to be honest, I was glad I was there to hold his hand. It's just tough. This is the part that is way complicated by his being a smoker. So, if you're reading this really fast so you can run outside to have a smoke, quit, now, and do it for your spouse so they don't ever have to watch such a thing.

The propofol has kept him sedated for several days and it is nice to have Pete back. My sisters Nicole and Susan were there and Nicole's husband John was there too. Pete flipped both John and Susan the bird so, he's doing just fine.

After they got the bulk of the yuck out of his chest, he was finally able to say something helpful, you know, "I love you". Gosh darn good thing, you know?

Oh, and his head has a little dent in in right on top. That means the brain swelling is starting to reduce. Dr. Volpi said he might be in a regular room on Tuesday kind of depending on how he does, and based on what I've seen over the last several day, how long it takes to find him a room.

See, I told you it was a good day. Tomorrow may be different, but today was good.

The things they prepare you for & the ones they don't

So, when the Physician's Assistant was taking a history and telling me about the craniotomy, he said that one of the things that regularly happens is serious eye swelling.

Well, I went in to Pete's room (I'm writing this on Friday, but it relates to Thursday, I'm a day behind or so) in the morning and I swear he looks like he pinched a nurse on the behind and she bopped him one. His nurse denies this happened. Sure it didn't. Anyway, his sweet long eye lashes were barely showing his right eye was so swollen. Of all the things I've seen in this process, that's what made my heart hurt more than anything else, it looked like it hurt so badly. But I did know about it in advance so I was not as upset. But something to remember, is tell people stuff!

What I was not prepared for was Pete's foley bag. Emerald green urine? Or maybe like the swimming pool that needs to be shocked. Yowzers. Not to mention the sheer volume of it. They are giving him a mess of medications through the day, so I have to figure it was one of them.

He's been on Propofol which is a drug the nurse called "Milk of Amnesia" and it is used to keep him sedated and also has an amnesiac side-effect. It is white and seems to be a little of a miracle drug. Personally, I'd like for them to figure out how to make it in tablet form and retroactive to Monday, but they don't seem to be going there. He had been getting a really major dose, and chief resident for the floor has the nursing staff reducing the dosage. He's also getting extra sodium in hopes that will help reduce the swelling. And there are about 5 other bags hanging there.

At the end of the day, he picked up a little fever so the nurse called for a cooling blanket. They sent it up, but didn't include the hoses from the cooling unit to the blanket. If that's the only thing that goes wrong, I'm a lucky lady!

No News is Good News

Wednesday was a good status quo day, for Pete anyway. They have increased the amount of sodium they're giving him, sort of trying to dehydrate him, to help keep fluid from continuing to collect in his brain. He started "eating" through his nose and that's some yucky stuff, that he seems to be fine with. I guess now he'll know how the puppies felt when he was feeding them that way.

For Kristy, it was absolute chaos! I had to go rent a car before I could go to the hospital and then deal with a tow truck in the medical center (no easy task although one would think that "Methodist Hospital" would be a good enough direction for the guy to know where to come). As I got a call that the tow guy was downstairs, Pete's mom, dad and sister arrived at the hospital. I wanted to make sure and prepare them for how he looked so nobody was surprised, but even still, there was a long delay before the tow truck dude showed up. About that time, my sister and niece arrived for mass at noon, but I wanted to go let the family know where I was before I disappeared on them. I got to relax during the end of mass and at lunch with Kerry and most of the rest of the day was fairly calm and relaxed.

The doctors again, weren't so positive, not negative, but still just making sure I knew we're not out of the woods yet. I'm fine with that. I am told that no real progress is expected, and anything we would consider progress would be the lack of deterioration. He did not deteriorate and stayed about the same.

The best part of the day for me was around 3:00 when the nurse said they were going to take him off the major sedative and let him come around a bit. It took a while, but he did. He was able to wiggle his right foot and give a thumbs up with his right hand with no problem. He also responded to pain on his left foot and his pupils did react to light. He would not open his eyes for me, and I told him he was being a hard head, but not nearly as hard headed as he was before the surgery. The nurse told me that was not nice and I told her that inside, he got a chuckle out of that. He reacted visibly when I mentioned Anna and then relaxed when I said she was just fine.

I brought a couple of pictures up to the hospital for him and they have been showed off to all the residents and staff on duty. I wanted to make sure they all knew who they are working for. Anna is doing really well, not upset about daddy not being home, and accepting that he's "at work". Uncle John is picking her up each night and she's liking that too.

I came up last night after Anna went to bed. I got to meet Monica from DeJean, which was a good thing, and got some more information about Monday morning. It's always a good thing to put a face with a name.

I think that's about it. I did get the car fixed for a small fortune, now I need to get the rental car back to Enterprise. We'll see how things go tomorrow.

Day 2

And I'm worn out already, this schedule probably needs some adjusting.

Tuesday I got up at the regular time, took Anna to school and then headed for the hospital. I got there just in time to talk to the doctor who said that it looks like the craniotomy needs to be done shortly. He called in Dr. Zhang to consult. Dr. Zhang is a neurosurgeon with a pretty crappy bedside manner. He was explaining the need for the surgery using such pleasantries as, "this is what Richard Nixon died of, he had a stroke and the brain swelling killed him". Ahh, such a good attitude. Um, could you bring Dr. Volpi back, he can give me not so good news in such a way that doesn't sound like Pete's hanging on to life by his fingernails.

Pete was awake and alert when I got there. A physician's assistant came by and asked Pete to say his full name, move his left and right arm and I don't remember something else. Pete was able to do all of it but still could not move his left arm. On the scale the guy was using, he scored a 14 out of a possible 15. Unfortunately, in the grand scale of brain injuries, this can change, and fast, and without notice at all.

He started explaining the procedure in more depth and with a better attitude about him. He said they would be removing a large portion of the skull, pulling the dura (the tough material surrounding the brain) and then suturing the skin back together. Some time later, 6 to 12 months from now, they'll put the bone back. In the meantime, the bone will either be stored in the bone bank at the hospital, or in the subcutaneious layer of fat on his abdomen.

While we're having this conversation, they are putting Pete on a ventilator to support his breathing. As I guess you've figured out, there are big concerns about rapid deterioration, and they don't want to be trying to get him breathing costing precious seconds. It will also help make sure he gets plenty of oxygen to reduce swelling and keep his face a pretty color. The doctor told me he didn't mind if I stayed while they did it, and I was like, um, NO! Good thing, because they ended up pushing meds on him to get him calm enough that he wasn't fighting the doctor.

So, the last words I had from Pete were right before they took me out of there to give his history AGAIN. The words were, "I love you too" so that's ok.

They took him in for surgery at 1:30 and he wasn't back in his room until almost 6:00. It was a blessing they didn't wait any longer. The CT showed not much swelling. The brain had actually swelled quite a bit. If you want to know exactly what they told me, then highlight this, when they removed the dura layer, the brain popped out the portion of the skull cut away.
I went back to the hospital at 8:00 after Anna went to bed. About a mile away, the baseball game cut off. Then I noticed the dash lights were dim and when I turned the headlights off, the radio came back on. Needless to say, once more this week, I was prayin and drivin! The alternator took a nosedive. Like I needed this? Yes?

More later--it's already 11 and I need my beauty sleep. New night nurse tonight he's a cutie.