Tuesday, September 30, 2008

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.

Sunday, September 28, 2008

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.

Friday, September 26, 2008

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.

Thursday, September 25, 2008

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?

Wednesday, September 24, 2008

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.

Tuesday, September 23, 2008

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.

Monday, September 22, 2008

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.

Sunday, September 21, 2008

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.

Friday, September 19, 2008

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.

Wednesday, September 17, 2008

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.

Tuesday, September 16, 2008

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.

Monday, September 15, 2008

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.

Sunday, September 14, 2008

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.

Friday, September 12, 2008

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.

Tuesday, September 9, 2008

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.

Monday, September 8, 2008

Jones 8--an Update


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.

Sunday, September 7, 2008

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!

Saturday, September 6, 2008

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.

Thursday, September 4, 2008


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.

Wednesday, September 3, 2008

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.

Tuesday, September 2, 2008

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?

Monday, September 1, 2008

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.


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.