I've been working on the CBeds project since February 26, 2006, and now its full-on crunch time! We Go-Live with Stage 1 (4 inpatient units and the CRT/Sups, Admitting and the PACU) a week from Tuesday.
With so much to get ready for Stage 1 and all of the other stages to follow weekly from then, there is a TON of work to do. It seems like at least a few days a week I'm finding myself at work for 10-12 hours. Then heading back for 7am the next day.
Its a strange thing for me, because I enjoy the project so much and I like the amount of responsibility I get to aborb, but my body just doesn't want to cooperate. I get so tired at the end of the day-- and my shoulders are so tense that an hour with Sheri this morning barely made a dent in it.
Still the project is fascinating! Of course there will bumps in the road but I think we're in great shape... I can't wait for the rush of energy that will inevitably come on Tuesday 11/7. The infamous day :)
Saturday, October 28, 2006
Thursday, October 12, 2006
Some wedding pictures
A few select images from Jessica and Joel's wedding.
A beautiful day--- and a beautiful bride and groom!
Jeff out and about in Albany! Looking good kid!
A beautiful day--- and a beautiful bride and groom!
Jeff out and about in Albany! Looking good kid!
Monday, October 09, 2006
10 Things I Love
First things that come to mind...
- Medium Caramel Iced Latee with Skim Milk (no sugar)
- V-neck sweaters
- Long hair
- Target
- A new suit, that fits, and is sooo cute
- Ali Edwards blog, newsletter, book.... almost anything from her creative mind
- DVR
- Fall leaves blowing down the street
- Scrapbooking my favorite memories
- Gilmore Girls
Brain Dump
So much has happened over the past couple months that I can barely get my mind around all of it... so here's one big brain dump... hopefully I can add in some pictures to share the story.........
Work
I am not cut out for working 50+ hour weeks. I'm just not. The going in early, staying late, never stopping for lunch, worrying about what else needs to get done. Not sure how people thrive on that. I enjoy being busy, and I love my job- but I don't think I could do it all day every day and love it.....
"All CBeds all the time" is becoming more true by the day. We're getting down to the wire- testing is almost over, we have a million last minute configuration items to push for, the Premise conference coming up (at which George, Ben and I are presenting on a topic yet to be decided), training is difficult to plan because we barely have enough resources & we haven't fully configurated the system, and people just seem to be dropping balls left and right. Its a LOT. I love it... still I love it. I live for my weekends and knowing that for 48 hours my time is all mine.... and then I do look forward to Monday.
I look forward to my routine-- getting coffee to wake me from the sleepiness that fills my whole body (that has kept me in bed far past the first 5:30 alarm).... Reading my emails in the morning - seeing what fires need to be put out-- and then switching over to Ali Edwards' blog or Lifetime Moments (sb website) in an attempt to put those problems aside for just a few more minutes. Then I remember that I need to get back to work and I'm sucked in... meeting after meeting, prepping, copying, shooting off emails and hoping to keep up. For about a week or so I haven't been able to leave before 5:30.... but I love reading my book on the train on the way home (when I can get a seat--- how many people DO ride the train every day!?! grrr)
Looking forward to----
The wedding itself was beautiful. The priest was kind and funny... after Jessica and Joel did their vows and there was a song being sung-- he asked: "Feel any different?" It was cute.
The reception was wonderful. The place looked gorgeous!!! A vision of fall brought indoors and very classy. The food was great. It was wonderful seeing all of the familiar faces from college. We had a blast dancing- the band was great.
Jessica and Joel had a blast, you could tell. They danced every song, and by the end of the night Jessica was more than a little tipsy- but so cute. And so happy.
Looking forward to:
Looking forward to:
Work
I am not cut out for working 50+ hour weeks. I'm just not. The going in early, staying late, never stopping for lunch, worrying about what else needs to get done. Not sure how people thrive on that. I enjoy being busy, and I love my job- but I don't think I could do it all day every day and love it.....
"All CBeds all the time" is becoming more true by the day. We're getting down to the wire- testing is almost over, we have a million last minute configuration items to push for, the Premise conference coming up (at which George, Ben and I are presenting on a topic yet to be decided), training is difficult to plan because we barely have enough resources & we haven't fully configurated the system, and people just seem to be dropping balls left and right. Its a LOT. I love it... still I love it. I live for my weekends and knowing that for 48 hours my time is all mine.... and then I do look forward to Monday.
I look forward to my routine-- getting coffee to wake me from the sleepiness that fills my whole body (that has kept me in bed far past the first 5:30 alarm).... Reading my emails in the morning - seeing what fires need to be put out-- and then switching over to Ali Edwards' blog or Lifetime Moments (sb website) in an attempt to put those problems aside for just a few more minutes. Then I remember that I need to get back to work and I'm sucked in... meeting after meeting, prepping, copying, shooting off emails and hoping to keep up. For about a week or so I haven't been able to leave before 5:30.... but I love reading my book on the train on the way home (when I can get a seat--- how many people DO ride the train every day!?! grrr)
Looking forward to----
- Premise User Conference next Monday 10/15 in Hartford. 3 days there.. taking things in, getting exposure, presenting (and hopefully not freaking out)
- Go Live in November. The chaos, the excitement. Seeing it go live on the unit and seeing how well all of planning works out. Good, bad or just crazy- I'd like to see it all with my own eyes
Jessica's Wedding
So Much Fun! That says it all in a nutshell... but then of course there is so much more. I went there on Wednesday night and it was so much work. Programs, pumpkins, gift bags for the hotel guest, rehearsal dinner t-shirts, running millions of errands.... but even through it all, we had a blast talking and stopping for a bite to eat when we could-- and watching Gilmore Girls at home while doing the craft projects :)The wedding itself was beautiful. The priest was kind and funny... after Jessica and Joel did their vows and there was a song being sung-- he asked: "Feel any different?" It was cute.
The reception was wonderful. The place looked gorgeous!!! A vision of fall brought indoors and very classy. The food was great. It was wonderful seeing all of the familiar faces from college. We had a blast dancing- the band was great.
Jessica and Joel had a blast, you could tell. They danced every song, and by the end of the night Jessica was more than a little tipsy- but so cute. And so happy.
Looking forward to:
- Seeing all the photos from the photographer. She gets them digitally and I get to use them to make her scrapbook!
- Talking to Jessica when she gets back from her honeymoon. Hearing all about St. Lucia.... Reliving the whole wedding. Pure Girl Talk!
Love
I am so in love I can hardly believe it. Not something I normally write about, but I feel like if I don't write anything I might just explode.
Dan is so sweet and wonderful to me. Throughout all of what we went through with Jeff, he was so supportive... cleaning the apartment, doing dozens of loads of laundry, reminding me that coming home to him wasn't as important as doing what I needed to do for Jeff. He offered Jeff his Playstation for when he got home-- and even rode over there one day to drop off video games.
One night I woke up when Dan did, confused (as I had been a lot between sleeping at home and at the hospital), and said out of impulse (as I did when looking after Jeff at night)-- "Do you need anything?" and Dan (probably not knowing that I really didn't mean that for him) simply said "no..." and laid back down. Then a split second later he said "Actually I do" and leaned over and gave me a big kiss before lying back down.
And yesterday was one of the best days I've had in a long time. I got back from NY around 3:00. We laid together and watched the Taladega race.... We cuddled and laughed. We teased eachother all day long, and tickled eachother. Neither one of us wanted to move... we ordered Chinese food to be delivered. Watched the recorded episode of the Office from last Thursday. Then we cuddled in bed, watched the end of Cast Away.... more cuddling, more teasing and tickling- and one great back massage.
I don't know where everything stands but I do know that I love him. That I am so happy.Looking forward to:
- Vacation. Punta Cana in February after I finish the Cbeds project. 7 days of sun and relaxation.
- Fall and winter. More time to cuddle, curl up on the couch with football or a movie or a book. Learning more about him, about us, loving him. Being loved.
Tuesday September 19, 2006
Jeff went home on Tuesday 9/19.... eight days after the whole bizarre thing began.
Sunday morning they clamped Jeff's drain to monitor it for 24 hours in hopes of taking it out on Monday. That was the last major step in his recovery. Luckily things went really well and as of Monday morning the pressure was normal and he was draining spinal fluid normally on his own. They did a CT scan to make sure things were really as they seemed, and that came back normal too.
Monday afternoon Jeff got his drain out. A torturous process from what he told me (I was back at work on Monday). They can't use any anesthetic because the brain is right there, so he just had to hold on to the chair really tight and wait for the stitching to be done. Brave kid. Yet again, took it like a trooper. And then on top of that- it was still bleeding far more than it should have-- and later that night they had to add another stitch.
We went home Monday night thinking Jeff might go to the general care unit Tuesday afternoon and maybe come home on Wednesday. Now that the drain was out, they weren't monitoring anything else (catheter and A-line, everything already taken out)
Monday at 10pm we got a call from Melissa that they were moving Jeff to the general care unit then (Ellison 12). Tuesday morning Dad and I went in early and saw him... slept better without being woken every couple hours.
Jeff called me around 9:30 to ask me for breakfast (his was cold by the time he got it). I brought eggs with cheese, bacon and homefries from the cafeteria. He ate almost all of it!!! Glad to see his appetite coming back. I stayed for a little while, we watched some tv.
His team of doctors came through and told him that things looked ok for him to go home. They'd write him prescriptions for percocet and he needed to take it easy.... The nurse came through around 10:30 and told him whenever he could get his ride home, he was free to go. Mom showed up around 11:00, we got his prescriptions, put him in a wheelchair and led him to the car.
Amazing. 4 days after his second surgery and he was on his way home-- and glad to be going.
Sunday morning they clamped Jeff's drain to monitor it for 24 hours in hopes of taking it out on Monday. That was the last major step in his recovery. Luckily things went really well and as of Monday morning the pressure was normal and he was draining spinal fluid normally on his own. They did a CT scan to make sure things were really as they seemed, and that came back normal too.
Monday afternoon Jeff got his drain out. A torturous process from what he told me (I was back at work on Monday). They can't use any anesthetic because the brain is right there, so he just had to hold on to the chair really tight and wait for the stitching to be done. Brave kid. Yet again, took it like a trooper. And then on top of that- it was still bleeding far more than it should have-- and later that night they had to add another stitch.
We went home Monday night thinking Jeff might go to the general care unit Tuesday afternoon and maybe come home on Wednesday. Now that the drain was out, they weren't monitoring anything else (catheter and A-line, everything already taken out)
Monday at 10pm we got a call from Melissa that they were moving Jeff to the general care unit then (Ellison 12). Tuesday morning Dad and I went in early and saw him... slept better without being woken every couple hours.
Jeff called me around 9:30 to ask me for breakfast (his was cold by the time he got it). I brought eggs with cheese, bacon and homefries from the cafeteria. He ate almost all of it!!! Glad to see his appetite coming back. I stayed for a little while, we watched some tv.
His team of doctors came through and told him that things looked ok for him to go home. They'd write him prescriptions for percocet and he needed to take it easy.... The nurse came through around 10:30 and told him whenever he could get his ride home, he was free to go. Mom showed up around 11:00, we got his prescriptions, put him in a wheelchair and led him to the car.
Amazing. 4 days after his second surgery and he was on his way home-- and glad to be going.
Saturday September 16, 2006
I woke up at 9:30 but probably could have slept all day if I let myself. I got up and checked a few emails, and uploaded pictures from the week to my photobucket account to try to make a filmstrip out of them. Didn’t get that all the way done. I also emailed Kim the pictures of she and Jeff from this week like she asked me too. She’s so nice and has been so great to us! And from what Mom says it sounds like she has a little crush on Jeff too, which is cute.
Mom picked me up around 11:00, we stopped at Dunkin Donuts, and Bed Bath and Beyond (for a new bean bag pillow for Jeff) and came right up to see him.
Dad said he had a pretty good night last night. Got a lot of sleep. His sodium is low, so they’re watching that and his heart rate got high but they’ve since brought that back to normal. The doctors said today would be a tough day for him, so to expect that, but so far Jeff hasn’t been complaining about the pain like he was last night. Lucky for him, he’s still asleep about 99% of the time.
I got here and stayed with Jeff until about 3:00 while Mom and Dad stretched their legs and got something to eat. Jeff slept almost the whole time. When they got back I left to grab a snack and make a few phone calls to catch up with Laura and Jessica. Around 5:30 or so Mark came by to say hello and see how Jeff was doing. Shortly after, Rachel, his nurse for today, came in and got him up and into his recliner where he had dinner. A feast of chicken soup, grilled cheese, peanut butter graham crackers and Gatorade. He ate more than he did for lunch and things seem to be settling well. Now at 7:10 he’s still awake but back in bed. Wanting “less talking” from us and from him… but otherwise ok, lying in bed watching a football game. Gram and Bubba are on their way in.
Gram and Bubba came around 7:30, and we had a few other unexpected visitors- Debbie, Jack and Joannie. Patrick also stopped by. He, Jeff and Melissa watched tv for awhile and the rest of us hung out in the waiting room.
Bubba was so relieved just to see Jeff. He kept saying on the way up “I just want to look at him. I just want to see him with my own eyes and I’ll be happy.” And he was. I stayed in the waiting room for most of the evening. Gram brought us Chicken, Broccoli & Ziti from Abington House of Pizza and we all ate dinner. Everyone left early since we couldn’t really spend much time with Jeff who was just sleeping and taking it easy. Finally around 10:00 Mom and Dad went home. Melissa stayed with Jeff and I went to walk Buffy.
That was an adventure. The poor dog was scared to death of me when I got there, running and hiding anywhere she could. I let her lick me and then just sat and watched tv to try to get her more comfortable… finally about 45 minutes later I got the harness on her and we went outside. Of course she wouldn’t pee, though. Finally we came back in and I let her play some more. I text messaged Melissa who said to try once more and stay by the door. That still didn’t work. Around 11:15 I headed back.
I slept on the cot until 3:30 when Melissa woke me up so she could go home. Shortly after I got in here, they made me leave so they could do an EKG because his heart rate was high. I guess that went well, but the nurse, Tina, (whom we had to basically beg to let us stay in the first place) didn’t call me to tell me I could come back in, so I finally called at 4:30 and she let me back in. Jeff slept straight through until 6:00am. He woke up thirsty and asking for pain meds, so we called in the nurse. He got pain meds, decadron and some blood pressure medicine to even him out. She said he’ll likely go for his CT scan today now that his sodium level has been good the last two times its been checked- meaning he can drink the solution he needs before the scan.
Then a few minutes before 7:00am the rounding surgeon came in. His name is James. He gave Jeff some tests and all went well. Said that they’re just keeping an eye on the drain and that they’ll evaluate tomorrow. They’re hoping that while it is open it, the output will decrease and his pressure will stabilize. If it does, the can take it out. I asked for the results of the MRI. He said he’ll check on it today and give us a preliminary answer but that the radiologist won’t be able to read it until tomorrow.
Mom picked me up around 11:00, we stopped at Dunkin Donuts, and Bed Bath and Beyond (for a new bean bag pillow for Jeff) and came right up to see him.
Dad said he had a pretty good night last night. Got a lot of sleep. His sodium is low, so they’re watching that and his heart rate got high but they’ve since brought that back to normal. The doctors said today would be a tough day for him, so to expect that, but so far Jeff hasn’t been complaining about the pain like he was last night. Lucky for him, he’s still asleep about 99% of the time.
I got here and stayed with Jeff until about 3:00 while Mom and Dad stretched their legs and got something to eat. Jeff slept almost the whole time. When they got back I left to grab a snack and make a few phone calls to catch up with Laura and Jessica. Around 5:30 or so Mark came by to say hello and see how Jeff was doing. Shortly after, Rachel, his nurse for today, came in and got him up and into his recliner where he had dinner. A feast of chicken soup, grilled cheese, peanut butter graham crackers and Gatorade. He ate more than he did for lunch and things seem to be settling well. Now at 7:10 he’s still awake but back in bed. Wanting “less talking” from us and from him… but otherwise ok, lying in bed watching a football game. Gram and Bubba are on their way in.
Gram and Bubba came around 7:30, and we had a few other unexpected visitors- Debbie, Jack and Joannie. Patrick also stopped by. He, Jeff and Melissa watched tv for awhile and the rest of us hung out in the waiting room.
Bubba was so relieved just to see Jeff. He kept saying on the way up “I just want to look at him. I just want to see him with my own eyes and I’ll be happy.” And he was. I stayed in the waiting room for most of the evening. Gram brought us Chicken, Broccoli & Ziti from Abington House of Pizza and we all ate dinner. Everyone left early since we couldn’t really spend much time with Jeff who was just sleeping and taking it easy. Finally around 10:00 Mom and Dad went home. Melissa stayed with Jeff and I went to walk Buffy.
That was an adventure. The poor dog was scared to death of me when I got there, running and hiding anywhere she could. I let her lick me and then just sat and watched tv to try to get her more comfortable… finally about 45 minutes later I got the harness on her and we went outside. Of course she wouldn’t pee, though. Finally we came back in and I let her play some more. I text messaged Melissa who said to try once more and stay by the door. That still didn’t work. Around 11:15 I headed back.
I slept on the cot until 3:30 when Melissa woke me up so she could go home. Shortly after I got in here, they made me leave so they could do an EKG because his heart rate was high. I guess that went well, but the nurse, Tina, (whom we had to basically beg to let us stay in the first place) didn’t call me to tell me I could come back in, so I finally called at 4:30 and she let me back in. Jeff slept straight through until 6:00am. He woke up thirsty and asking for pain meds, so we called in the nurse. He got pain meds, decadron and some blood pressure medicine to even him out. She said he’ll likely go for his CT scan today now that his sodium level has been good the last two times its been checked- meaning he can drink the solution he needs before the scan.
Then a few minutes before 7:00am the rounding surgeon came in. His name is James. He gave Jeff some tests and all went well. Said that they’re just keeping an eye on the drain and that they’ll evaluate tomorrow. They’re hoping that while it is open it, the output will decrease and his pressure will stabilize. If it does, the can take it out. I asked for the results of the MRI. He said he’ll check on it today and give us a preliminary answer but that the radiologist won’t be able to read it until tomorrow.
Friday September 15, 2006
I slept until she woke me at 5:00 to get up and ready in case they came to get him at 6:00. He was still mostly asleep that whole time… Dad got here a few minutes before 6:00 and Melissa had overslept a little and ran here at 6:30 to see him before he went in (poor Buffy not getting her morning walk). And then of course, he didn’t even get taken in right away. Probably after 7:00 they finally came for him.
We each said goodbye and good luck and we’d see him in a couple hours. Not quite as tearful as the first time. We’d all done this before (unfortunately) and we knew he could it again.
Mom, Dad, Melissa and I went to the Gray Family Waiting Area and got a seat. Melissa left shortly after to go home and shower and put the poor dog out to pee. I called Dan, who I hadn’t heard from all day Thursday and was worried he didn’t know Jeff was going into surgery. I got a hold of him and as it turns out he had left his phone at Gillette.
Mom had a tough time for a while because they wouldn’t let her wait with him pre-op like they did last time. But after about a half hour, I got her motivated and we went to get our stuff then went to Melissa’s to shower and change.
We spent a couple hours at Melissa’s, cleaning up and checking some email. Made the morning pass by faster, and made us feel like real people again. I was saying to them that its amazing how a shower can trick you into thinking that you’re rested and fresh, ready for the day.
We went back and met up with Dad. Susan and Joe came by after an appointment Joe had, and then they left to run errands and bring back lunch. Janet stopped in to say hello… and we met Dr. Dahl (Allen’s surgeon for his prostate surgery). Mostly Melissa and I sat at the front of the room and worked on a 1000 piece puzzle we had no chance of finishing.
Dan called around 1:00 to see if we had any updates. I said no, but I’d call and let him know. He said he’d head over soon to meet up with us. No sooner did I hang up than Curry walked into the waiting room with a smile.
Jeff was out of surgery and awake, talking and doing just great on his neuro-functioning exams. He was much more confident that they’d removed everything this time. What they found was actually a hemangioblastoma, which is a tumor of blood vessels. It was hard to find at first, but once he found it, he was very sure he’d gotten it all. They would still do an MRI to check however. They would also need to do a full body CT scan to see if there are any other hemangioblastomas in his body. There is a disease called VHL, which is a genetic disease, in which the body doesn’t have the gene to stop these tumors from forming. If present, they tumors can present in numerous places in the body and thus they need to scan to be sure. Dr. Curry said he thought this was unlikely since neither Mom nor Dad had been diagnosed, but it was still something to consider. One more new obstacle to consider, but at least he’d made it through the surgery well and he was ok.
Around 1:30 Dan showed up; he’d gotten out of work early. We told him that next time he needs to call early because somehow he’s always associated with that moment that Curry walks through the door. Susan and Joe came back shortly after with bags of stuff for lunch. We went back up the waiting room on Blake 12. Mom and Dad went into see Jeff, and then Melissa and I went. He looked much more swollen than he did the first time around. Kim said that was normal because he’d spent so much time face down in surgery the past 3 days and that the swelling would go down. The left side of his top lip is all fat too because of the tube that was there. {Kim said they got into it in the elevator… I told her that was ok. He needs a good punch in the face sometimes J}. He was really sore and they wanted him to rest, so we left him alone.
Came out and ate lunch. Janet stopped up with information and articles about VHL and we started reading up on that. We won’t know until we get the CT scan of him, and genetic testing on us to determine if he/we have this, but in looking through the family history it seems like many of the kidney and other tumor issues may in fact be related to this disease.
I took a nap around 3:00 on the same couch as the day before. Dan sat and played games on the computer and Mom and Dad hung out, probably checking in on Jeff. Melissa went home for a while to put out the dog.
When I woke up Dad was in with Jeff, and Mom wanted to go to the gift shop to shop, and get away for a little bit. We bought Susan a big lime green hat in memory of the crazy lady! Mom also bought a raincoat and leash/collar for Buffy since Jeff and Melissa kept talking about wanting to get her one. She bought me a new alphabet stamp set they had.
When we got back I came in to relieve Dad for awhile- he’d been sitting in with Jeff for a couple hours. I stayed in the room until almost 9:00 when Melissa came to take my place. Mostly he slept the whole time, except to get some ice or rinse his mouth out. Dan came in to check on me and see Jeff around 7:00. Pretty surprising because hospitals freak him out, but he did actually stick around for a few minutes.
I came out at 9:00 hoping that Mom was ready to go home and we could get her to leave and get a good night’s sleep. She wasn’t ready yet… Terri and Doug were still there just visiting, so we talked with them for a while. Then Mom wanted to wait for Susan to arrive. Around 10:00 Susan showed up, all geared up for the night. She’d been joking with my Dad that she’d bring her sexiest nightgown for their night together…. And she wouldn’t disappoint. She stopped at Marshall’s on the way in and got a sexy off-white teddy and also a pair of pj pants and a tank top with lips all over them that say “Kiss Me!” It was a riot!! She was laughing so hard she smashed her head on the door! Oh, and she loved the hat!
Finally around 10:30 we got out of there. We drove the van to Gillette to pick up Dan’s truck and we headed our separate ways. I got home and just crashed. My own bed felt soo good.
We each said goodbye and good luck and we’d see him in a couple hours. Not quite as tearful as the first time. We’d all done this before (unfortunately) and we knew he could it again.
Mom, Dad, Melissa and I went to the Gray Family Waiting Area and got a seat. Melissa left shortly after to go home and shower and put the poor dog out to pee. I called Dan, who I hadn’t heard from all day Thursday and was worried he didn’t know Jeff was going into surgery. I got a hold of him and as it turns out he had left his phone at Gillette.
Mom had a tough time for a while because they wouldn’t let her wait with him pre-op like they did last time. But after about a half hour, I got her motivated and we went to get our stuff then went to Melissa’s to shower and change.
We spent a couple hours at Melissa’s, cleaning up and checking some email. Made the morning pass by faster, and made us feel like real people again. I was saying to them that its amazing how a shower can trick you into thinking that you’re rested and fresh, ready for the day.
We went back and met up with Dad. Susan and Joe came by after an appointment Joe had, and then they left to run errands and bring back lunch. Janet stopped in to say hello… and we met Dr. Dahl (Allen’s surgeon for his prostate surgery). Mostly Melissa and I sat at the front of the room and worked on a 1000 piece puzzle we had no chance of finishing.
Dan called around 1:00 to see if we had any updates. I said no, but I’d call and let him know. He said he’d head over soon to meet up with us. No sooner did I hang up than Curry walked into the waiting room with a smile.
Jeff was out of surgery and awake, talking and doing just great on his neuro-functioning exams. He was much more confident that they’d removed everything this time. What they found was actually a hemangioblastoma, which is a tumor of blood vessels. It was hard to find at first, but once he found it, he was very sure he’d gotten it all. They would still do an MRI to check however. They would also need to do a full body CT scan to see if there are any other hemangioblastomas in his body. There is a disease called VHL, which is a genetic disease, in which the body doesn’t have the gene to stop these tumors from forming. If present, they tumors can present in numerous places in the body and thus they need to scan to be sure. Dr. Curry said he thought this was unlikely since neither Mom nor Dad had been diagnosed, but it was still something to consider. One more new obstacle to consider, but at least he’d made it through the surgery well and he was ok.
Around 1:30 Dan showed up; he’d gotten out of work early. We told him that next time he needs to call early because somehow he’s always associated with that moment that Curry walks through the door. Susan and Joe came back shortly after with bags of stuff for lunch. We went back up the waiting room on Blake 12. Mom and Dad went into see Jeff, and then Melissa and I went. He looked much more swollen than he did the first time around. Kim said that was normal because he’d spent so much time face down in surgery the past 3 days and that the swelling would go down. The left side of his top lip is all fat too because of the tube that was there. {Kim said they got into it in the elevator… I told her that was ok. He needs a good punch in the face sometimes J}. He was really sore and they wanted him to rest, so we left him alone.
Came out and ate lunch. Janet stopped up with information and articles about VHL and we started reading up on that. We won’t know until we get the CT scan of him, and genetic testing on us to determine if he/we have this, but in looking through the family history it seems like many of the kidney and other tumor issues may in fact be related to this disease.
I took a nap around 3:00 on the same couch as the day before. Dan sat and played games on the computer and Mom and Dad hung out, probably checking in on Jeff. Melissa went home for a while to put out the dog.
When I woke up Dad was in with Jeff, and Mom wanted to go to the gift shop to shop, and get away for a little bit. We bought Susan a big lime green hat in memory of the crazy lady! Mom also bought a raincoat and leash/collar for Buffy since Jeff and Melissa kept talking about wanting to get her one. She bought me a new alphabet stamp set they had.
When we got back I came in to relieve Dad for awhile- he’d been sitting in with Jeff for a couple hours. I stayed in the room until almost 9:00 when Melissa came to take my place. Mostly he slept the whole time, except to get some ice or rinse his mouth out. Dan came in to check on me and see Jeff around 7:00. Pretty surprising because hospitals freak him out, but he did actually stick around for a few minutes.
I came out at 9:00 hoping that Mom was ready to go home and we could get her to leave and get a good night’s sleep. She wasn’t ready yet… Terri and Doug were still there just visiting, so we talked with them for a while. Then Mom wanted to wait for Susan to arrive. Around 10:00 Susan showed up, all geared up for the night. She’d been joking with my Dad that she’d bring her sexiest nightgown for their night together…. And she wouldn’t disappoint. She stopped at Marshall’s on the way in and got a sexy off-white teddy and also a pair of pj pants and a tank top with lips all over them that say “Kiss Me!” It was a riot!! She was laughing so hard she smashed her head on the door! Oh, and she loved the hat!
Finally around 10:30 we got out of there. We drove the van to Gillette to pick up Dan’s truck and we headed our separate ways. I got home and just crashed. My own bed felt soo good.
Thursday September 14, 2006
I woke up around 6:20 (alarm went off at 5:30), and showered, packed and headed for MGH. I got in by 8:00am. Jeff was still sort of asleep. I came in and put my bag down and talked to Dad, and as we were talking, my purse fell off the chair and a can of soda fell out. Jeff woke up asking what happened. “Was that a can of soda? I thought I heard a can of soda fall.” I said “Sorry, my bag fell off the chair.” “Was it a can of soda,” he asked again. “Yes, Jeff, a soda fell out of my bag.” The kid doesn’t miss a beat.
I stayed in the room while he continued to sleep, and Dad went out to wash up and change—Mom was still asleep in the pull-out chair in the waiting room. Mom came in probably a half hour later and Jeff had woken up. Kim, his nurse, came in and told him she could take out his catheter and his arterial line. He was very relieved to have that cath out!
Shortly after his physical therapist, Denise, came in to check on him. She asked what he thought about getting out of bed and maybe going to the bathroom. He said ok.
He sat up, steadied himself and stood up on his own! Once he was up, he asked if he had to go right to the bathroom- and Kim said, no he could go for a walk first. So he went out of his room to the right and walked around the whole perimeter of the floor! He had me bring my camera and take pictures of him walking around. After we got around, Denis asked if he wanted to go again. He said sure. Denise suggested that they go the other way that time- that she likes to “unwind” after winding. He did the other loop and we stopped half way to get my dad and show him that Jeff was already up and walking.
When he got back to the room he sat in his chair to eat some breakfast. He didn’t manage to get down more than a few bites of plain bagel, but it was something. Spent the rest of the morning in his chair.
Kim came in later that morning saying she was going to change the dressing on the drain on the right front of his head. I was about to go downstairs to pick up coffee- and batteries for my camera, when she came in… and he says to me (realizing that I’m about to leave) “you’re going to miss all the good shots!” (meaning pictures of his wounds). I told him that my batteries were dead and I had to run for batteries and I could take whatever pictures he wanted as soon as I got back. He was ok with that. It was just funny. He really wants to see what he looks like and what he’s missing. (Later when Kim came back, I did take a few pictures of the back of his head, bandaged, and the front as she was changing the dressing)
Dr. Curry also came in and did some more tests. Jeff did all of them perfectly. Jeff wanted a few pictures with him so I took a shot of them talking, and also of Jeff, Dr. Curry and Kim.
Kim came back to give him another walk later. After the first lap she asked if he wanted to go back to his room- and he said no. She asked which way he wanted to go and he said “I want to unwind”- it took her a minute, but then she too remembered how Denise likes to wind and then unwind. This time we did a longer loop though, and went out towards the elevators and over towards White/Bigelow. He walked down the hall looking at everything out both sets of windows- making us move if we were blocking his view J. Then we went back through the waiting area. He wanted to see where all of us had been hanging out that week.
When he got back to the room around noon, he went into the bathroom to pee. Nothing at first, but with Kim threatening to put the catheter back in if he didn’t go by 3:00, he managed to get it out!
After that it was time for lunch. He managed a decent amount of mashed potatoes and ginger ale, which was more than we expected. He tortured Melissa the whole time telling her that she didn’t know how to spoon-feed him. I think he was having fun just busting her balls.
Not too long after, Mom and Dad came in and he vomited. Up came the lunch. I don’t think it hurt quite as badly as he expected but I think it still felt like a set back. His stomach was hurting, so they gave him some anti-nausea medicine, which made him sleepy, and he stayed that way for the rest of the afternoon.
Around 2:00 or 2:30 Dr. Curry came up to talk with us about the results of the MRI. Not such great news this time. They didn’t get the whole thing in surgery and he’d have to go back in for surgery, probably Friday morning. Because the operation had to begin with puncturing that cist, the tumor shifted and because it is very similar in color to that area of the brain it is not as easy to detect.
It was such a disappointment. We were all fairly confident with what we heard the first time and because Jeff was doing so well all day, we were all relieved. Well, all except Mom. She had a feeling about it, not a good feeling- and was anxiously awaiting the results of that MRI.
Dr. Curry and Dad went in to tell Jeff the news. He was still groggy and in and out of sleep but he heard and understood them. And he wasn’t too happy about it, but he knew it had to be done.
We spent much of the afternoon in the waiting room. I took a 45 minute nap, and Pat wandered around absorbing the news, I think. Jeff was mostly asleep and didn’t want to talk. They kept him fairly high on pain meds so that he’d sleep the day away. It was better that way- he’d waited from Monday to Wednesday for surgery the first time, he didn’t need to spend another whole day waiting.
Theresa and George came by that night to check on me. They stayed for about 20 minutes just listening to the latest of what was going on and asking if needed anything. Really nice of them.
Patrick, Kevin and Doug were here most of Thursday evening. Debbie & Jack stopped by with dinner—they had to drop Aunt Florence off for a sleep study over on Bigelow 12 that night. We all hung out in the lounge and talked.
I also got a call that night from Stephanie Murray. Her mom was keeping her updated on what was going on, but she wanted to call herself and tell me they were thinking about him and praying for him. I gave her the full update on him and she told me a little of what was going on with her (they bought a house in French’s Crossing)… it was nice hearing from her.
Thursday night Dad went home and Mom and I stayed. John Murphy ordered a cot to be set up in the Consultation Room across from the waiting room. Mom went to bed around 10:30 while I came into Jeff’s room. I did manage to get some sleep on and off… getting up when his IV drips ended and the alarms went off, or when he wanted ice or water or something like that. Deb was his nurse that night and she was great.
Around 1:15 he blew out his IV line and Deb had to fix it to give him some more morphine. She couldn’t get it back in, so another nurse came in and did it. But that whole process took about 30-45 minutes so he and I were up for awhile with that going on. Mom came in as that was winding down and we switched off.
I stayed in the room while he continued to sleep, and Dad went out to wash up and change—Mom was still asleep in the pull-out chair in the waiting room. Mom came in probably a half hour later and Jeff had woken up. Kim, his nurse, came in and told him she could take out his catheter and his arterial line. He was very relieved to have that cath out!
Shortly after his physical therapist, Denise, came in to check on him. She asked what he thought about getting out of bed and maybe going to the bathroom. He said ok.
He sat up, steadied himself and stood up on his own! Once he was up, he asked if he had to go right to the bathroom- and Kim said, no he could go for a walk first. So he went out of his room to the right and walked around the whole perimeter of the floor! He had me bring my camera and take pictures of him walking around. After we got around, Denis asked if he wanted to go again. He said sure. Denise suggested that they go the other way that time- that she likes to “unwind” after winding. He did the other loop and we stopped half way to get my dad and show him that Jeff was already up and walking.
When he got back to the room he sat in his chair to eat some breakfast. He didn’t manage to get down more than a few bites of plain bagel, but it was something. Spent the rest of the morning in his chair.
Kim came in later that morning saying she was going to change the dressing on the drain on the right front of his head. I was about to go downstairs to pick up coffee- and batteries for my camera, when she came in… and he says to me (realizing that I’m about to leave) “you’re going to miss all the good shots!” (meaning pictures of his wounds). I told him that my batteries were dead and I had to run for batteries and I could take whatever pictures he wanted as soon as I got back. He was ok with that. It was just funny. He really wants to see what he looks like and what he’s missing. (Later when Kim came back, I did take a few pictures of the back of his head, bandaged, and the front as she was changing the dressing)
Dr. Curry also came in and did some more tests. Jeff did all of them perfectly. Jeff wanted a few pictures with him so I took a shot of them talking, and also of Jeff, Dr. Curry and Kim.
Kim came back to give him another walk later. After the first lap she asked if he wanted to go back to his room- and he said no. She asked which way he wanted to go and he said “I want to unwind”- it took her a minute, but then she too remembered how Denise likes to wind and then unwind. This time we did a longer loop though, and went out towards the elevators and over towards White/Bigelow. He walked down the hall looking at everything out both sets of windows- making us move if we were blocking his view J. Then we went back through the waiting area. He wanted to see where all of us had been hanging out that week.
When he got back to the room around noon, he went into the bathroom to pee. Nothing at first, but with Kim threatening to put the catheter back in if he didn’t go by 3:00, he managed to get it out!
After that it was time for lunch. He managed a decent amount of mashed potatoes and ginger ale, which was more than we expected. He tortured Melissa the whole time telling her that she didn’t know how to spoon-feed him. I think he was having fun just busting her balls.
Not too long after, Mom and Dad came in and he vomited. Up came the lunch. I don’t think it hurt quite as badly as he expected but I think it still felt like a set back. His stomach was hurting, so they gave him some anti-nausea medicine, which made him sleepy, and he stayed that way for the rest of the afternoon.
Around 2:00 or 2:30 Dr. Curry came up to talk with us about the results of the MRI. Not such great news this time. They didn’t get the whole thing in surgery and he’d have to go back in for surgery, probably Friday morning. Because the operation had to begin with puncturing that cist, the tumor shifted and because it is very similar in color to that area of the brain it is not as easy to detect.
It was such a disappointment. We were all fairly confident with what we heard the first time and because Jeff was doing so well all day, we were all relieved. Well, all except Mom. She had a feeling about it, not a good feeling- and was anxiously awaiting the results of that MRI.
Dr. Curry and Dad went in to tell Jeff the news. He was still groggy and in and out of sleep but he heard and understood them. And he wasn’t too happy about it, but he knew it had to be done.
We spent much of the afternoon in the waiting room. I took a 45 minute nap, and Pat wandered around absorbing the news, I think. Jeff was mostly asleep and didn’t want to talk. They kept him fairly high on pain meds so that he’d sleep the day away. It was better that way- he’d waited from Monday to Wednesday for surgery the first time, he didn’t need to spend another whole day waiting.
Theresa and George came by that night to check on me. They stayed for about 20 minutes just listening to the latest of what was going on and asking if needed anything. Really nice of them.
Patrick, Kevin and Doug were here most of Thursday evening. Debbie & Jack stopped by with dinner—they had to drop Aunt Florence off for a sleep study over on Bigelow 12 that night. We all hung out in the lounge and talked.
I also got a call that night from Stephanie Murray. Her mom was keeping her updated on what was going on, but she wanted to call herself and tell me they were thinking about him and praying for him. I gave her the full update on him and she told me a little of what was going on with her (they bought a house in French’s Crossing)… it was nice hearing from her.
Thursday night Dad went home and Mom and I stayed. John Murphy ordered a cot to be set up in the Consultation Room across from the waiting room. Mom went to bed around 10:30 while I came into Jeff’s room. I did manage to get some sleep on and off… getting up when his IV drips ended and the alarms went off, or when he wanted ice or water or something like that. Deb was his nurse that night and she was great.
Around 1:15 he blew out his IV line and Deb had to fix it to give him some more morphine. She couldn’t get it back in, so another nurse came in and did it. But that whole process took about 30-45 minutes so he and I were up for awhile with that going on. Mom came in as that was winding down and we switched off.
Wednesday September 13, 2006
Day of Surgery
Mom, Dad and I got to the hospital around 8:45am. We should have been there earlier except for major traffic we hit on the expressway and the fact that I overslept! They were coming at 7:15 and I woke up at 7:20 to realize I wasn’t yet awake and they’d be on their way. It didn’t help that my phone was on vibrate in my purse. Oops. I got ready in about 10 minutes and we flew out of the house.
Jeff was awake and had done numerous tests before we arrived, but was all ready for surgery. We spent the morning waiting and just talking about other things to pass the time. Mom’s boss, Lisa, came by for awhile and we all talked with her. Jeff joked about playing golf with her since no one else wants to and he can never get my dad to go with him.
Around 11:15 or so they came to take him to surgery. We weren’t quite ready since we were expecting him to leave around noon. We each said good bye and good luck separately. I went first and started crying the second I gave him a kiss and a hug- and his tears were flowing right after mine! I told him I loved him and that I knew he was going to be fine… and that I wasn’t crying because I was scared about the surgery but just that I hated that he had to do it at all… I knew he’d be fine- and to just keep remembering that. We both cried a little more. I said I love you one more time- and then let someone else go next.
They let us ride down in the elevator with him to the 3rd floor (Susan had also come to see him at that point so she was with us in the elevator). We got out and said goodbye again, and then they let Mom go in with him while he was just in prep, putting in lines and the catheter etc. I’m sure he was grateful to have that because that was what he was afraid of- being in the OR before he went under anesthesia.
We came back to the Gray Family Waiting Room where Mom met us shortly after. Terri came in to help us wait things out- crossword puzzles, magazines and candy in hand. Tina also came down for a bit, and then we decided to go get some lunch and kill some time. We went to the Hill and got burgers and sandwiches and showed Terri the slideshow of Jeff’s haircutting party.
Terri had to head out before we finished- and when the 4 of us were done, we went to Melissa’s to hang out and play with Buffy. Figured she’d be lonely since Melissa and Jeff were out of the house all day.
Then we came back to the Gray Family Waiting Room to continue the waiting process. Maureen and Marie were here waiting for us then. We chatted with them, then Melissa and I started working on a crossword puzzle together. Dan came shortly after and we enlisted him to help with the crossword puzzle we couldn’t quite finish. Then since he was ranking on us, we decided that we’d have a challenge- Melissa and I would do one crossword puzzle and he’d do two of them. He beat us! Neither of us finished completely but he did more than we did! Sad, but we had fun doing it!
After 7:15, Dan was getting really hungry and decided to go down to the caf for a slice of pizza. As soon as he got to the door, Curry walked through it (though he didn’t know, never having seen him before).
Dr. Curry brought us into the consultation room and told us that from what he could tell, he thought they got it all. Everything went really well and Jeff was awake and talking, and did well with his neurological functioning tests even right after surgery. They would do an MRI that night to confirm that everything was gone.
We were sooo relieved. We all got on the phone calling everyone with the good news! We still had to wait for at least 1 more of hour of him in recovery before we could go see him back on Blake 12. We went upstairs around 9:00, but they didn’t have him back in bed and settled until after 9:30 and then we could only go in 2 at a time.
Mom and Dad went in first and immediately when they came out, Melissa and I went in. He looked so great it was hard to believe. We all expected all sorts of crazy bandages on his head and that he’d be swollen with all sorts of scars and wound dressings. He had the drain in the front that was covered with about 1 ½ square inches of gauze. Above each ear he was a little swollen, which we later learned was because of the imaging technology that they put on his head to capture the shape and activity of his brain. Otherwise, he was lying down with his head back on the pillow, very similarly to when he went in. He was talking to us, still a little groggy and obviously tired. But sooo much better than we ever imagined. Even still had a little humor left in him. We said we’d let him get back to resting like the nurses wanted and he was quick to say “Adios!”
Most of the rest of the night we didn’t go back in too much. Patrick came and so did Susan. Susan brought dinner from Artu in the North End- all different kinds of pasta, which tasted so good since we were so hungry and finally relieved enough to eat.
Mom and Dad both stayed the night on Wednesday, to take turns being in the room with Jeff so that when he woke up, he’d have a familiar face and someone to get him ice or whatever he needed. I drove the van home around 11:30 to get a good night’s sleep and hopefully stay the next night to relieve Mom and Dad. I called Laura and we chatted all the way home. It was nice to talk with someone outside of the hospital for awhile and I knew she’d be up studying J But by the time I got home I was definitely beat. I was getting settled, unpacking stuff from my purse, while we were wrapping up our conversation and all of a sudden I got panicked. I couldn’t find my cell phone and I was all upset that I left it at the hospital, and I told my parents to call if they needed anything… then I realized “I’m still ON the phone!” Definitely time for bed! Laura was laughing her ass off!
Mom, Dad and I got to the hospital around 8:45am. We should have been there earlier except for major traffic we hit on the expressway and the fact that I overslept! They were coming at 7:15 and I woke up at 7:20 to realize I wasn’t yet awake and they’d be on their way. It didn’t help that my phone was on vibrate in my purse. Oops. I got ready in about 10 minutes and we flew out of the house.
Jeff was awake and had done numerous tests before we arrived, but was all ready for surgery. We spent the morning waiting and just talking about other things to pass the time. Mom’s boss, Lisa, came by for awhile and we all talked with her. Jeff joked about playing golf with her since no one else wants to and he can never get my dad to go with him.
Around 11:15 or so they came to take him to surgery. We weren’t quite ready since we were expecting him to leave around noon. We each said good bye and good luck separately. I went first and started crying the second I gave him a kiss and a hug- and his tears were flowing right after mine! I told him I loved him and that I knew he was going to be fine… and that I wasn’t crying because I was scared about the surgery but just that I hated that he had to do it at all… I knew he’d be fine- and to just keep remembering that. We both cried a little more. I said I love you one more time- and then let someone else go next.
They let us ride down in the elevator with him to the 3rd floor (Susan had also come to see him at that point so she was with us in the elevator). We got out and said goodbye again, and then they let Mom go in with him while he was just in prep, putting in lines and the catheter etc. I’m sure he was grateful to have that because that was what he was afraid of- being in the OR before he went under anesthesia.
We came back to the Gray Family Waiting Room where Mom met us shortly after. Terri came in to help us wait things out- crossword puzzles, magazines and candy in hand. Tina also came down for a bit, and then we decided to go get some lunch and kill some time. We went to the Hill and got burgers and sandwiches and showed Terri the slideshow of Jeff’s haircutting party.
Terri had to head out before we finished- and when the 4 of us were done, we went to Melissa’s to hang out and play with Buffy. Figured she’d be lonely since Melissa and Jeff were out of the house all day.
Then we came back to the Gray Family Waiting Room to continue the waiting process. Maureen and Marie were here waiting for us then. We chatted with them, then Melissa and I started working on a crossword puzzle together. Dan came shortly after and we enlisted him to help with the crossword puzzle we couldn’t quite finish. Then since he was ranking on us, we decided that we’d have a challenge- Melissa and I would do one crossword puzzle and he’d do two of them. He beat us! Neither of us finished completely but he did more than we did! Sad, but we had fun doing it!
After 7:15, Dan was getting really hungry and decided to go down to the caf for a slice of pizza. As soon as he got to the door, Curry walked through it (though he didn’t know, never having seen him before).
Dr. Curry brought us into the consultation room and told us that from what he could tell, he thought they got it all. Everything went really well and Jeff was awake and talking, and did well with his neurological functioning tests even right after surgery. They would do an MRI that night to confirm that everything was gone.
We were sooo relieved. We all got on the phone calling everyone with the good news! We still had to wait for at least 1 more of hour of him in recovery before we could go see him back on Blake 12. We went upstairs around 9:00, but they didn’t have him back in bed and settled until after 9:30 and then we could only go in 2 at a time.
Mom and Dad went in first and immediately when they came out, Melissa and I went in. He looked so great it was hard to believe. We all expected all sorts of crazy bandages on his head and that he’d be swollen with all sorts of scars and wound dressings. He had the drain in the front that was covered with about 1 ½ square inches of gauze. Above each ear he was a little swollen, which we later learned was because of the imaging technology that they put on his head to capture the shape and activity of his brain. Otherwise, he was lying down with his head back on the pillow, very similarly to when he went in. He was talking to us, still a little groggy and obviously tired. But sooo much better than we ever imagined. Even still had a little humor left in him. We said we’d let him get back to resting like the nurses wanted and he was quick to say “Adios!”
Most of the rest of the night we didn’t go back in too much. Patrick came and so did Susan. Susan brought dinner from Artu in the North End- all different kinds of pasta, which tasted so good since we were so hungry and finally relieved enough to eat.
Mom and Dad both stayed the night on Wednesday, to take turns being in the room with Jeff so that when he woke up, he’d have a familiar face and someone to get him ice or whatever he needed. I drove the van home around 11:30 to get a good night’s sleep and hopefully stay the next night to relieve Mom and Dad. I called Laura and we chatted all the way home. It was nice to talk with someone outside of the hospital for awhile and I knew she’d be up studying J But by the time I got home I was definitely beat. I was getting settled, unpacking stuff from my purse, while we were wrapping up our conversation and all of a sudden I got panicked. I couldn’t find my cell phone and I was all upset that I left it at the hospital, and I told my parents to call if they needed anything… then I realized “I’m still ON the phone!” Definitely time for bed! Laura was laughing her ass off!
Tuesday September 12, 2006
I woke up after 7:00am, got ready for Mom and Dad to pick me up. By the time they fielded a million calls at home and packed the car with their stuff and stuff for Jeff, we got into MGH after 10am.
Jeff was anxious for us to get there and was glad to see us when we arrived. Melissa had gotten there early so at least he wasn’t alone.
He said he had a good night before… sleeping when he could. We figured he crashed as soon as we left because he’d had such a long day, but his nurse Kim had him up for a walk, and then when they got back to his room, they stood looking out at the view out his window talking til almost 1:00 in the morning.
Tuesday was the day of waiting. Nothing to do all day unless symptoms got worse and he had to go into surgery—but he was feeling the same as he had on Monday.
We got confirmation that his surgery was scheduled for 12:45 on Wednesday. We saw Dr. Curry and some of the others and Jeff continued to do well on his neuro-functioning exams.
Visitors started coming. Pat took a half day of work and then showed up. Mike Natale came over after school. Susan visited on breaks from work and came by after work too.
Jeff continued talking about wanting to shave his head before surgery- and Dr. Curry said to go for it, that it actually makes it easier for them. He also explained more about the surgery and what Wednesday would be like, and Grammy and Bubba who had come to visit were there for that. They both had a hard time seeing Jeff, but hearing all of the details and being reassured by Curry somehow made it easier, especially for Bubba.
Tuesday night’s visitors were many:
Susan, Patrick and Kara Tighe
Debbie, Jack and Kevin McDermott
Joe Frost
Linda Natale
Eddie, Nancy and Michael Natale
Karen and Steve
Grammy and Bubba
Aunt Florence and Uncle Jack
Richie and Chrissy
Krissy and Matt
Ree Ree and Lindsay
Matt Morrissey, Jared Crowley, Ryan Gaetles, Josh and Kim
So it was fitting that Tuesday night was Jeff’s head-shaving party. Melissa brought in his clippers, and Jeff sat on the stool by his bead, like he was in the barber’s chair. Matt started things off with a big stripe down the middle of his head, back to front. Then we all took turns shaving strips. It was really funny.
Then people started getting creative, going in all sorts of funky directions. We told Jeff he should walk around and freak people out because he probably looked like he had some crazy disease that was eating away at this hair.
When Jeff was not quite finished, he switched and cut Pat’s hair. But Pat’s hair was too long and thick, so I got a pair of scissors from the nurse and cut it shorter, which made it easier for Jeff. He cut it clean, and then Dad finished shaving Jeff’s head and they got a picture together.
Tuesday this crazy lady who was visiting someone she knew on Blake 12 was saying to Mom that the bright green color she was wearing was a crazy color and something about jumping off a bridge if you’re wearing that color. She was nuts! But it became the running joke of the week between Mom and Susan.
We stayed late again Tuesday night, but finally the three of us headed home and hoped to get a good night’s sleep before the day of his surgery. I took a muscle-relaxer Mom had given me, which did the trick and I was up right away.
Jeff was anxious for us to get there and was glad to see us when we arrived. Melissa had gotten there early so at least he wasn’t alone.
He said he had a good night before… sleeping when he could. We figured he crashed as soon as we left because he’d had such a long day, but his nurse Kim had him up for a walk, and then when they got back to his room, they stood looking out at the view out his window talking til almost 1:00 in the morning.
Tuesday was the day of waiting. Nothing to do all day unless symptoms got worse and he had to go into surgery—but he was feeling the same as he had on Monday.
We got confirmation that his surgery was scheduled for 12:45 on Wednesday. We saw Dr. Curry and some of the others and Jeff continued to do well on his neuro-functioning exams.
Visitors started coming. Pat took a half day of work and then showed up. Mike Natale came over after school. Susan visited on breaks from work and came by after work too.
Jeff continued talking about wanting to shave his head before surgery- and Dr. Curry said to go for it, that it actually makes it easier for them. He also explained more about the surgery and what Wednesday would be like, and Grammy and Bubba who had come to visit were there for that. They both had a hard time seeing Jeff, but hearing all of the details and being reassured by Curry somehow made it easier, especially for Bubba.
Tuesday night’s visitors were many:
Susan, Patrick and Kara Tighe
Debbie, Jack and Kevin McDermott
Joe Frost
Linda Natale
Eddie, Nancy and Michael Natale
Karen and Steve
Grammy and Bubba
Aunt Florence and Uncle Jack
Richie and Chrissy
Krissy and Matt
Ree Ree and Lindsay
Matt Morrissey, Jared Crowley, Ryan Gaetles, Josh and Kim
So it was fitting that Tuesday night was Jeff’s head-shaving party. Melissa brought in his clippers, and Jeff sat on the stool by his bead, like he was in the barber’s chair. Matt started things off with a big stripe down the middle of his head, back to front. Then we all took turns shaving strips. It was really funny.
Then people started getting creative, going in all sorts of funky directions. We told Jeff he should walk around and freak people out because he probably looked like he had some crazy disease that was eating away at this hair.
When Jeff was not quite finished, he switched and cut Pat’s hair. But Pat’s hair was too long and thick, so I got a pair of scissors from the nurse and cut it shorter, which made it easier for Jeff. He cut it clean, and then Dad finished shaving Jeff’s head and they got a picture together.
Tuesday this crazy lady who was visiting someone she knew on Blake 12 was saying to Mom that the bright green color she was wearing was a crazy color and something about jumping off a bridge if you’re wearing that color. She was nuts! But it became the running joke of the week between Mom and Susan.
We stayed late again Tuesday night, but finally the three of us headed home and hoped to get a good night’s sleep before the day of his surgery. I took a muscle-relaxer Mom had given me, which did the trick and I was up right away.
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