DEREK'S SUMMER
2006.....
THE MOVIE!!!!
 

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8-17-06
We arrived at 6:00am and were told that Derek may not be able to have the operation
Due to the fact that no room would be available in ICU after the surgery. We had to wait until 8:30 am but they took him.  He was a real trooper and Dad went into the operating room to help him go to sleep by singing to him.  It worked and he was smiling as he went to sleep.  It's 5:00 now and he's still in surgery.  They started by doing some muscle releases in his groin and now they are working on putting the rods in his spine.  So far it's been good.

We'll update later today

8-18-06

We finally got settled and into ICU at 2:30 a.m. and Derek did awesome.  They were able to correct the spine completely and he is now all lined up again.  They had to do a transfusion with extra fluid so his body is very puffy and they did the breathing tube in his nose instead of mouth to allow him to gag.  Seems to be very comfortable in his sleep but startles easily and there's lots of noise.  Had issues with his heart and blood pressure due to extra fluids but they monitored and this morning gave him more fluid and those rates are now better.  His front area bruised from the clamps they used in surgery so he has special bandages on this front side and we'll keep watching them .  They are now able to turn every 2 hours and when they do he gags and vomits so his lungs are staying clear.  (Good thing).  They had the brace dept make a brace to keep his legs spread wide at the knees and he has funny socks on his legs for circulation.  They bathed him today and if he only knew two cute nurses were doing this he would have smiled but he didn't even get to know this.  It's now 6:30 pm and they have changed his medication to remove the morphine and try something that doesn't agitate and will allow him to wake up a little more to try to breathe more on his own to remove the tube either Saturday or Sunday.  Hope then he could leave ICU on Monday.  Very noisy place in ICU so Mom is tired but Derek is comfortable so I don't cry as much.  Ryan and Jim visited just as he was throwing up and being told the Yankees won 12-4 (being a Yankee fan not sure if it was the excitement of seeing family or the Yankee win)!. 
Will update sometime tomorrow
until then we THANK ALL of you for your support and good  wishes :)
 

8-19-06
Not a good night for Derek or Mom.  Derek never went to sleep and was turned every 2 hours which caused him to gag and have to be suctioned out.  It was painful.  This kept me up plus it was a busy helicopter night that woke me in between the 2 hours.  Just when we were settling down the Orthopedic guy decided 5 was a good time to do rounds and throw on the light and talk loudly.  He didn't know we'd be trying to sleep!!  He gave him a good thumbs up on the surgery part and said he was progressing nicely.  At 7:30 when they turned him he started coughing more and gagging more so they called the respiratory team and they made the decision to remove the breathing tube and give him some relief.  That was much better and I was able to swab his mouth out.  He has a breathing mask now which is better and his heart and blood pressure are still in check.  His pain medicine seems to work and they increase it when they turn him which helps.  He's awake more and responding to things but not talking to us or answering any questions.  Occasional winces of pain but it's tolerable for now.  We even got to have one arm full of IV needles removed so he only has the big one in the neck and his right side but his left arm is now free to hold.  I had them leave in the catheter to try to prevent infection and it doesn't bother him yet so it's a good thing to do.It's about 3 now and they say Derek can go to a real room but there aren't any openings so he'll stay here for now.  He's watching TV and watching everything around him.  Jim is here to enjoy the pleasant accommodations while I go home to shower in a real shower with my towels and sleep without helicopters and beeps (I may even make Ashley sleep with Ryan).  We'll let you know when he's in a room with a phone if you want to call and talk to him.
                                                                                       Linda :)

Derek is resting comfortably :)
THANKS  FOR All OF YOUR THOUGHTS AND PRAYERS :)
The Diffs

8-20
Started the night with a slight fever of 100.3 .Was given some Tylenol. And his temp returned to normal
After  that it was fairly uneventful night. Derek had a tough time sleeping. It didn't seem like he was in a great deal of pain He wasn't crying. I think his "body clock" is screwed-up. It's now 7:45 Am. And Derek is resting and watching TV.
Will have an update later today:)
jimmy d

Afternoon update
Again Derek has a fever 100.9
He was given more Tylenol and is responding well .We've been successful at keeping him awake today. In hopes of "resetting his clock "We'll let you know how his night was :)
And hopefully he'll get a good nights rest -. it's now  6:50pm and Linda says that Derek is resting comfortably.
Will update tomorrow
Thanks for all your emails and  calls of support :) !!!!
jimmy d
 

8-21
He finally got some sleep last night - off and on but at least something.  Woke up at 6:30 to the doctor coming in and saying he was doing good but wanted chest PT to check out his lungs causing he was struggling to cough.  Boring morning of just sitting around resting while he waited for others to check.  Then the skin doctor came in and checked his stomach which had some of the wounds blister while others were healing.  That went good and she made some other adjustments.  They were concerned about his swollen stomach and swollen private area.  Around 3 people starting coming and he started going down hill for some reason.  His PT said his lungs are not as clear as yesterday and his respiration rate was dropping so they did some work on that and will be back tomorrow.  Then his fever went up to about 101 so they gave him some Tylenol rectally to relieve that.  Then they brought up the X-ray to take shots of his bloated stomach but that turned out to be OK so they'll now give him something to relieve that issue.  The pain people will try tomorrow to take him off continuous medicine and give it to him as needed instead.  The nutrition people need to now wait again for his stomach to go down so he needs to keep the catheter in at least another couple of days and they are relieving the private area swelling with ice bags.  Hopefully tomorrow we'll be back up again toward recovery - slight setback but nothing out of the ordinary according to surgeon - just like we all know - if there's a chance it could happen - it will happen to Derek.  Luckily though the Yankees took all 5.  He even got to see Portsmouth win a game in the Little League World Series.  
Linda

8-22
The night didn't start out good.  The fever got up to 102 degrees and they thought he might have an infection.  They did a test of urine but that came out OK.  When the ortho doctor got out of surgery she looked at his earlier x-ray and discovered that the base of both lungs was collapsed and that was causing the fever.  Again, she said this was normal and not really anything they needed to fix.  She put him on Tylenol and asked that he have his chest PT every 4 hours.  His fever went down to a mild fever and he actually slept pretty good for several hours.  Today has just been more about ice and medicine for his private area and to give him a B.M.  He's off of the continuous med and only gets as needed.  His temporary brace for his knees is out and replaced by a much more comfortable brace which for now has to stay on all the time.    They fixed the IV in his neck so it doesn't tug as much.    We bathed him and brushed his teeth so his throat and mouth feel better.  Also gave us an opportunity to check all wounds and they all look dry and clean so keep your fingers crossed.   He was even smiling when Jaime was pounding on his lungs since she's pretty cute.  But, the highlight of the day was when Jason Varitek came and visited him. Derek got an autograph picture of him while spending some time with V-Tek luckily we didn't mention that  he was a Yankee fan (:

Pce out - Rdiffy

BTW. RYAN IS THE MAN
btw2.... Ryan is perfectly fine and still getting the babes as usual.

8-23
AM

Derek had a so so night.  He fell asleep at 7:00 and slept until 9 when they starting doing his night routine and put him on his back, did his vitals, etc.  He was pretty gaggy most of the time, but it was a good thing.  Most of the night was off and on sleep in between gagging but other than that the fever is now gone and he's much more comfortable today.  His roommate is leaving so he'll only have one TV to watch and will have to decide what channel to keep it on.

PM
The afternoon went OK.  Derek has now managed two b.m's. and all is fine.
The physical therapy department came in and we sat him in his wheelchair for 15 minutes which hurt but like a trooper he settled down and tolerated it.

Still waiting for the nutrition group to come in and give him the OK to have something other than gatorade and fat which he's still on continuously so that is hopefully the last hurtle we'll have to do and maybe it will be tomorrow.

He doesn't have any fever today and his heart rate is not even on the monitor anymore.  Still watching his lungs but other that the base they think that he is OK in that department.  He's even been smiling and trying to do some flirting with the nurses he sees walk by that catch his eye.  Now that's the Derek we all know.

8-24
Sorry we didn't update but it was hectic cause we actually came home last night.  The morning started as usual at 6:30 when the doctor came in to check how his night was.  She said if he had his usual breakfast then she'd let him home later that day.  So of course he was all for that.  The nurse at 9 was told to start the journey for him to go home.  We gave him a half of his g-tube feed.  So, he saw two of the people who'd just been checking on him from the Insurance company and they said goodbye.  Then his friend from PT came in and checked on him and said he was set to go.  Then around noon they turned down the level of his of gatorade and shut off his fat.  Then a half hour later they turned that off and said in a bit he'd have to have a blood sugar level before he could go home.  In the meantime we were off to the X-ray department to do a final X-ray of his back and hips.  We put him from his bed to a stretcher and me and a pretty clinical assistant took him from his room for the first time to and he enjoyed the ride around the hallways and down the elevator to at least look at some different walls for a while.  Then the X-ray people said he'd have to come off the stretcher and actually sit up for the x-ray.  Oh Oh - I was nervous of the pain for him since he hadn't sat in a week.  But pretty Erin and I managed to sit him in the special chair for not 1 but 4 x-ray which included twisting and turning.  Not only did he not cry (winced a few times), but he was even still smiling.  I noticed how straight he now sits compared to those same position x-rays we did 3 weeks ago.  Then it was back to the stretcher and back to his room and back to his bed where the nurse came in and pricked his finger for the blood test.  Yes that was fine.  So now we had to have lunch and see if his blood test remained fine.  OK we can do that and just hang out some more.  So we did and then she did the finger test again and he was still fine.  So now he can have two of the IV's taken out and two more bandages added to his body collection.  I called Jim and said he's almost ready so come on in.  Around 5 the doctor came in to remove the central line from his neck.  She was so great to him all week and he was smiling now so she was happy to see him like this.  She discovered that he had 3 stitches in the central line so it took a little longer than she thought but again he was a trooper while I held him on his side and she removed the stitches and stopped the bleeding.  Then she gave him an even bigger bandage on his neck for his collection.  Finally she wanted just 1 little look at his back to make sure that looked good.  But no, she thought it needed more tape in several places.  Well, let's just begin again she said.  So, we called in a nurse and the three of us removed every bandage and tape from his back and then the doctor reapplied some medicine and rebandaged the entire section of his spine.  What team work we had and once again Derek was a trooper while everyone did this!!!!!  Finally he was put back on his back and declared good to go.  Dad walked into the room within 1 minute of him finishing and then was able to even remove Derek from bed, put him in his wheelchair, put him in the car by himself with no complaints from Derek.  We noticed how tall Derek got when we see him sitting straight in the car.  SO WE ARE HOME AND DEREK IS THE MOST AWESOME TROOPER IN THE WORLD.  

8-25
AM
The fist day home :)Derek slept great as did mom. There's  no place like home!!!
We plan on getting Derek to increase his "sit time ".Also we are awaiting a call/delivery of a new hospital type bed
PM
Well as luck would hold true for the Diffenbacher family we went to change Derek and Jim checked out the wound in his groin and sure enough it had opened up and was bleeding.  For those that know Derek had this happen about 2 years ago and ended up back in the hospital with a nasty infection.  So, not taking any chances we immediately called his surgeon's office at Children's and said what had happened and that we wanted it looked at.  They said bring him in and so when Jim said aloud we need to bring him back to Boston, Derek burst into tears.  Well of course those that know me know that then I burst into tears.  After everything we'd just been through and how brave he was the thought for either of us to go back was not sitting well.   I dried my eyes though and said that we needed to get the wound checked and that he'd be home right after that.  We finished getting him dressed and Jim made the trek into Boston to see the wound care team.  Since our handicap van is in the repair shop now I was left to be nervous while Ryan was playing football.  Once in Boston they notice that it did have the beginning of a small infection that they think we caught just in time.  Since he was there they again rechecked all his wounds and now Jim is back to wound care at home parenting by changing his groin bandages and treating this two times a day as well as the one on the neck and monitoring the one on his back.  He's on an antibiotic today and not as comfortable since he's been in a sitting position for so long so we actually gave him some pain medicine for the first time in 2 days.  But, the good news of the day was that he did get a bed that is much more comfortable for him and has some cushion for his weary body.  Jim and Linda are trying to convince him to stay on the couch for a few hours while they borrow the comfy bed for some much needed rest. (NOT).  : )
Stay tuned now for Derek's Road to Recovery

8-26
Not the best of times again.  Derek slept OK and Jim slept on the couch to get up often and turn him so that he'd stay as comfortable as possible. We had given him all the medicines that we were suppose to.  Luckily Ryan had to get up at 7 a.m. for football so while I was waiting for my coffee to finish I decided to check on Derek before I left.  Good thing I did because one of his medicines had worked too well and Derek had gotten his bandages soiled.  Panic set in and I screamed for Jim to wake up and Ryan ran down stairs as well.  A very quick call to Boston again who advised us to take all bandages off and bathe him as best we could.  That was not easy for Derek and his pain was very bad but there wasn't any way we could stop.  Once bathed we had to make sure everything got as dry as possible and then Jim had to reapply all bandages.  Special thanks to Ryan who not only helped but accepted that he'd be late for football and maybe have to run an extra lap or two.  It was not an easy morning and all this before Jim could even have a cigarette or a sip or two of coffee which we all know was hard on him as well.  We are now settled for the morning and Derek is more comfortable and watching a movie.  Just another day on his road to recovery which is taking too many turns.  All in all just another day in paradise with the Diffenbacher Family.  :)
 

8-27
It was an uncomfortable day for Derek as the pain was frequent at first.  We finally told him he could go back to his new comfortable bed and we wouldn't move him at all.  That put a smile on his face.  From then on we moved him from side to side whenever he got uncomfortable and did our best to keep the changing and touching to a minimum.  He seemed to be able to settle better after that and accepted a lot of visitors to the house who came to see him and see how he was doing.  We all caught up on sleep last night and the amount of times he needed to be turned was a little less than the night before.  It's 11 a.m. now and no emergency calls to Boston and he's still in his bed being turned only when needed.

  Click to see Derek pic

8-28
Today wasn't too bad a day.  Still in pain but we left him in his bed and didn't attempt any removal.  Just did the turning back and forth from side to side and on his back as needed.  Had to change all bandages but he didn't seem to mind this at all.

9-1
 

We are now back in the hospital for at least a week with a set back in Derek's recovery.  When he spiked the fever of 103 we went to the Emergency Room at Children's and he continued to have his fever and so they took some blood tests but then really wanted the orthopedic department to make the call on what to do cause they felt it had to do with his surgery.  They were delayed and time went on and on for all four of us while we waited from 7:00 till Ryan and Jim had to leave at 2:00 a.m.  When the orthopedic person came in he agreed something was going on but wasn't sure what and wanted to admit Derek and do some tests to see the source of the infection.  After Jim and Ryan left Derek endured a catheter inserted for a urine test, the doctor probing his back, and about 6 x-rays.  We finally got to a room around 4:00 a.m. with the knowledge that they would look at everything the next day (which was already today for us).

I woke up around 7 a.m. to the nurses coming in to see what the plan was.  Derek woke up but then fell back asleep.  I think I then dosed off again till 8 and then got coffee.  

The doctor came in and said that everything was looking good and they would do an ultrasound to see if they saw any fluid buildup but he didn't have a fever anymore and maybe that was it and it was just a virus.  Of course I got my hopes up and called Jim with the good news.   We'd go home when they did the ultrasound and found nothing and he no longer had a fever.  Ya hoo!!!.

So down we went to ultrasound and were met by another doctor from ortho who wanted to look at his back.  I gladly showed him expecting him to say "this looks good".  But no, he couldn't do that cause he immediately saw a puffiness around the middle of the back that I guess is not normal and he put his fingers on around the spine and basically said the ultrasound was going to show the fluid he knew was there and that was not good.  He needed to see if the fluid was infected by extracting some.  If it was he said he'd open him up again.  I was floored and upset but kept my fingers crossed.  We ended the ultrasound and went back to our room where he came in immediately and took a large needle and inserted it into Derek's back.  He said since Derek was still recovering the nerves hadn't returned so Derek would only feel pressure and not the needle.  Derek never cried while I watched him insert this needle and removed lots of fluid from the back and inserted it into test tubes and containers.  He looked and said from him experience it was not good and was infected.  He'd rush it but Derek would probable go to surgery that day to open the back and remove the infection.  I called Jim back in tears and said to come as quick as he could.  I was tired and very depressed. 

We waited most of the day but the doctor was sure enough that he booked an OR while he waited.  By 4:00 we were down in the pre-op room awaiting surgery again.  The anesthesiologist came in to give Derek some medicine and brushed up against him and was concerned at how very hot his skin was.  Of course, the fever came back with a vengeance.

Surgery lasted 2 hours and the doctor explained as soon as he opened him it was nasty and if we hadn't come in at the first indication we would have been in within the next 3-5 days with something worse cause it was about to get worse real quick.  For once we had good timing.  They removed the infection and did what they call a packing which is some sponges vacuum sealed into his back and attached to a pump that will draw out any more that is in there.  He is then sealed up with bandage but the back is left open with these sponges.  He's in ICU tonight since he was so very sick as they took him in and they want extra precautions monitored so Jim and I are home to get some sleep for the long road.  He will stay like this till probably Tuesday just getting medicine and letting the pump work.  Then they will bring him back in the OR and put a new IV into him more securely and remove the sponge and either stitch his back or staple it shut.  Then he will be on IV for a few more days in the hospital with the hope to release him home after that for 4-6 weeks (yes weeks) of IV medicine that he can take at home.  For those that know us, it sounds familiar to us and so we know the drill but feel we're better prepared this time.

When we left he looked so much better than we had seen him on Wednesday and Thursday and all his numbers were at the right level.  They said he might spike a fever for a few days as his body fights the infection and then should settle down on the new antibiotic they will give him which will be strong. 

To Jim I say I couldn't do this without him as he is my rock when I fall apart he lets me and then tells me how it will all be good soon.  To Ryan I say thank you and we love how supportive you have been and how accommodating of our new schedule.  Derek is lucky to have you as his twin brother.  To Derek I say you are the greatest trooper in the world to endure what you have been enduring with a smile as often as you can.  When I cry you cry so I also now feel your pain and your strength.  You are so strong and you will feel so much better when this is all over.  To our friends and family we say thank you all so much for the kind words and help you have all given us.  We are truly blessed to have each and every one of you and we know you are all behind us wishing Derek luck
Our journey begins again and we will take it one procedure and day at a time.
Linda
 

9-2
It's now 9:00 am.
And were headed back in .And will have an update on how he is doing post-op

PM Update
 

9-3
AM
Derek slept good after getting all settled on the 10th floor by 10:00 p.m.  The nurse came in every 2 hours to move him and check him but we'd both go back to sleep when he was done.  The pumps from the back had to be changed for the first time and I, of course, was sort of sick seeing it at first but then got used to it so I'm OK now moving him and seeing his back.  The technology is wild and how they are doing this sponge pump thing.  The orthopaedic person came in around 6:00 a.m. to review his night and said it still looks good for the next procedure on Tuesday.  No fever and no reaction to the medicines.  Around 7:30 I woke up again for the day and felt pretty good and had coffee before Derek woke at 8 and watched TV until his sponge bath time and then he had visitors - Dad, Ryan and Grandma Jo.  He was all smiles.  So we remain doing what we're doing and things still look better than before.
linda
PM
It's now 7:30.And we're settled in watching the Red Sox game. We're hoping for orthopedics to make evening rounds
So that we can find out what time Derek is scheduled on Tuesday to remove all the dressings from his spine.
Also we hope to have Derek back to getting "real food "by tomorrow. We'll let you b know as soon as we do:)
Derek is doing awesome!!!...Considering all  he's been through of late.
THANKS for all your support :)
jimmy

9-4
AM
Derek had a very quiet night
Derek has started back on regular feeds.
He had a whole container of choc. pudding plus his Ensure last night. We 're still awaiting word on when his surgery is scheduled for tomorrow. We'll keep you posted :)

(Click on pictures for larger view)
 

9-5
Derek had an OK night after making us nervous with a higher than normal temperature. Think it was just being overtired and nerves cause as I got him relaxed and quiet for the night the temp went down. Slept a lot but woke a lot when people come in, noises happen. Typical now that he's feeling better and aware of everything.

Doctors came in at 6 and said he was a go for his surgical procedure. Looked forward to one more step home. Then they came in around 9 and said that they now know that his bowel incident over the first weekend home was the cause of the infection and this takes longer to cure and they need to be more aggressive. So, instead of closing him up today they just removed the sponges, did another clean and put new sponges in for 3 more days. They also had to give him two new IV lines since the one in his neck and arm collapsed this morning. Started a new antibiotic that will help but it may be causing a rash so they need to give him medicine before the medicine. Derek was very agitated going into this procedure cause he knows it's no fun going under anesthesia and then trying to recover again. Now we'll wait till at least Friday to do this procedure again and again until the infection is gone. Then it's longer on the IV antibiotics and now they've added several months on an oral one after that. Again, we need to take one procedure at a time so for now he's comfortable again till tomorrow and see what that brings. Jim and I are now going to try alternating being with him. Ryan is starting school and his schedule is picking up and Derek gets agitated when no one is there during the night. He's OK as long as he's awake and no we come back to the room, but don't want to leave either child alone so we will do tag team with both boys.

9-6
AM
Good morning everyone !!!!
Derek had an OK night.
Today we'll be working on getting Derek back on his regular eating schedule in order to get him ready for his next round of operations. Also we've been given the go ahead to get Derek back in his wheelchair today.
Will let you know how things go later today.. until then have a nice day:)
jimmy
PM
It's now 12:45 and Derek has already been sitting up in his wheelchair.
Thanks to the help of these awesome people ...
Click on pics for larger view

9-7
AM
Had a routine night.  Derek is able to sleep when he's in his room by himself, but wakes when anyone comes in to check him or do a procedure.  They continue to just monitor everything and try to figure out how much antibiotic his body needs.

This morning he lost another IV so he's gone from 3 to 1 so they'll have to add more today or tomorrow again.  His arm is swollen from it and when she removed it they actually saw liquid come out which was good they saw that now cause his body doesn't need any extra fluid in it.   He's still scheduled for another wash and check of his back tomorrow but not sure of the time. This time they'll try a different type of sponge that has some medicine on it that they said is brand new to the hospital.  They were able to wash his hair finally with a special cap that they use with no water.  He loved the head massage from the pretty nurse! 
Today they'll get him out of his bed again into a chair and he'll try a normal day of feeding.  Nutrition group checked him out and he was fine with what we're doing and he'll even get his carnation breakfast that has added protein to help him heal as well.  Today will be just like home for once!  Occupational Therapy arrived and checked out his hands and arms and were very impressed with what he could do.  He moved them and stretched them on her command for both sides.
PM
Not too bad an afternoon.  He sat in his wheelchair for about 1 hour and was mildly uncomfortable but not crying.  He did a regular feed for once.  The only bad thing is he has no IV's left and they've now tried about 7 times sticking him and losing it before it sets.  They'll wait a few more hours and then another person from the IV department will try.  He's all bruised.
We hope to get him to have a quiet night so he's well rested for his surgery tomorrow .
 

9-8
AM
The day started out early. Derek was just going back to sleep after the usual wake up of activity for the rolling from side to side, the temp taken, etc, when at around 6:30 they came in and said he was ready to go down for his procedure. Needed to take blood first and of course they stuck him 4 times before calling in some help and then stuck him 2 more times before giving up. Went in for his procedure around 7:30 a.m. and they also put 3 more IV lines in and gave him a small transfusion of blood. The infection is better but not gone enough that they want to take the chance of closing his back yet. They cleaned him again and partially closed it but they want to leave it like this now until next Friday at which time they'll check again. They were concerned also about the placement of Derek's baclofen pump that's in his lower abdomen. The infection is near it and if it gets on the tubing for the baclofen pump he could get worse so they made the decision it was best to remove just the tubing attached to the pump which connected to his spine until the infection is all clear. They will give him this medicine via his g-tube instead for the time being. They also tried to put in his central line but couldn't so general surgery will have to do that one again some other time. They don't feel that spot is in danger of infection so he can have that anytime when they are running out of places for the IV in his arm and hands since that's what he needs for his antibiotic. He'll now get that antibiotic every 12 hours for the next few months. He was back in his room around 12:30 - 1:00 where he was shivering from everything but trying to relax at the same time. Will start to increase his fluids again and try to get some type of feeding schedule back again to get him ready for the next procedure. No getting out of bed today.
All in all... a rather disappointing day....We were hoping he could have his back closed up and perhaps go home sometime next week .

PM
Derek is feeling better, he's resting and having a tube feed. And watchin the Red Sox game.
THANKS TO ALL OF YOU WHO HAVE BEEN WALKING THE ROAD WITH US!!! :)

9-9
AM
Well guys... sorry to report that Derek had a not- so- good night.
It all began when one of the tubes that drain the infection away became clogged on the inside of his back making it unusable. And then around 11ish the other pump that pulls the infection out began to malfunction as well. Every ten minutes it would start beeping saying it was clogged (but it wasn't). So we had to keep resetting it. We spent a good portion of the night trying to contact the Ortho resident -on -call to see what we could do -but they were very busy with  emergencies last night. So that weren't able to see him until 4 this am. They're going to contact main  Derek's Ortho Dr. this am  to see what could be done. Will  keep you posted.
Derek was also very uncomfortable from the surgery so the Pain Dept. was called in around 3am to see what they could to make him feel better. They increased his Baclaphin which helped. He finally got to sleep at 4:30 this am.
As of the time this was written Derek is awake and watching TV.
Will have another update later today
9-9
PM
The ortho department came in around 8 p.m. and took all of Derek's tape off his back cause some of the blood was "pooling" causing a large section at the bottom to be uncomfortable. They put a type of sponge that goes on the outside of the wound and reapplied a pump to this and then retaped him. Again he was a trooper while they did all of this and his back looks a little red from all the tape. They still think the issue is the muscle spasms he's getting and need to resolve that. Derek was able to get a bit of sleep off and on during the night but clearly was uncomfortable. When they'd give him his relaxant he'd sleep and then wake when it was time for more.
 

9-10
The pain department and his doctor for his medicine both checked him this morning and they agree that it's the muscle spasms they need to deal with. When they had to tie off the baclofen pump they now need to figure out how much he needs to replace it. They have upped the dosage he gets of baclofen and put him on a stronger pain medicine till he gets past this and then they'll go down on the pain medicine. Keep monitoring him as needed. A little more comfortable but the nurses that deal with him know how hard it is cause he's not smiling as much any more and you can see he's uncomfortable. They try to cheer him up but he's not talking much. It will take time. He is having his normal routine for feeding and such so we'll do what we can to help.
Click on pic for larger view

Mighty Mike and Derek

9-11
AM
Good morning all. Derek had a fairly good night. We're still dealing with spasm issues from when his pump was disconnected. His baclofen  has been increased again as well as his valium .He is now on Methadone  and Adavar to help him with the pain. The Adavar is the one that seems to offer the most benefit to Derek .He finally got a better nights sleep The best night since last Thursday. He is still sleeping :)
Will let you know how the rest of the day goes in the PM update.
jimmy
PM
It was decided to let Derek remain sleeping as long as he could in order to make him stronger for the next cleaning of his back on Friday.  So, Linda and I are sleeping at home to make us stronger as well.  Derek was resting comfortably when I left and when I called later to check they said he had woken up briefly around medicine time and when given he was back sleeping comfortably.  We are hoping this long rest will make him stronger for his fight. :)
Jimmy
 

9-12
AM
Well, what we thought was a good night sleep for Derek and his family has now turned into another road block.
It seems that Derek is sleeping too good now and they don't know why and cannot seem to wake him up properly. They decided maybe he had too many medications in him so around 4 a.m. they stopped everything but some of his baclofen. That didn't seem to work so they called us and told us we should come in. It was a very long ride into Boston and of course we hit traffic which made it worse. When we came in Derek was still sleeping and two nurses were trying to wake him to no avail. Then when they left something startled him and he woke up and Jim and I were glad. But, it didn't last long and it didn't appear he really knew what was happening. They told us to just wait and see how he did in a little while. So, we did and relaxed a little. Then suddenly after Jim left 4 doctors walked in and the head said that it wasn't a good idea to just let him wait it out and he wanted to give him some medicine that should wake him. It must be strong cause 4 doctors had to keep checking what they were doing and recording it. It appeared to open his eyes but again not focus him. Gave him a little more. Sweat starts and he becomes agitated. Good sign. Then he relaxed back to what he was with his eyes shut. Time to call in Neurology now. They have now done some quick tests which he did good on by their standard and they too are leaning towards too much medicine and want to reverse that with other medicine before they try any other testing he doesn't appear to need. They are running some blood tests first to get more signs and his oxygen level is down a little now so they are giving him oxygen via the nose tube and a mask in front of him. He has a tube going through his nose to his stomach to relieve some of that fluid.

Will update later when they run more tests.

Linda

 

9-13
AM
Through the night was not good. He appeared to be stabilizing and showing signs of more reaction so they left him on the 10th floor. Then all of a sudden he spiked a fever, lost all IV's and seemed more agitated. They even packed him in ice for the fever. Lots of people in and out all night and now he seems to just be making the noise all the time and not resting in between. Not liking that. Have now gone back to giving him methadone to see if this relieves him, but need to do it slow. Managed one IV in him and removed the foley. New people in this morning now say his kidneys may not be working right as a result of the antibiotic and they need to resolve those. That's why his feet are swollen but his mouth seems dry? They are requesting at 7 am from Dr. Graef to remove him for ortho as the primary team and put him on medical to address all the issues and then ortho can just treat his back but they wouldn't be primary to have to contact. They say they have it under control they just have to find the right mixes.  He has now had another chest x-ray, ultrasound on his bladder and kidneys, more blood test, urine test.  We are waiting for them to put all of this data together and see if they know what's wrong with him and how to fix it.  The neuro team doesn't think he had a stroke based on their results.  The renal team is concerned with his swollen feet as long as he's putting out some fluid but they will check the ultrasound as well.  Very frustrating letting it now be another waiting game when this time we dont' know what's wrong and anxiously want them to know and have a path to get better again.
PM
Well it's been quite a day!!!
At about 3:30 Derek's new General Med team paid us a visit. And discussed new strategy for dealing with the situation. First  of all as was stated before due to the fact that his kidneys have suffered some damage due to the antibiotics. They want to stop the treatment to allow his kidneys time to recover . there is still enough antibiotic in  his system due do this with out jeopardizing the infection recovery. It was also stated that the damage was also affecting his ability to get rid of the other meds as well- hence his slow recovery time !!!
After the Gen team left Neurology paid us a visit . And after a conversation with me it was decided that he should have a catscan to rule out the possibility of brain abnormality brought about by all he's been through. We brought him downstairs to get it done. But while there  Derek started responding to requests  for cooperation. When he needed to keep his head still for the scan. I had him make eye contact with me witch he was able to do !!!:)
Then while on the way beck up to his room ..both Mighty Mike (his nurse) and me noticed he seemed much more responsive to his surroundings. Then  when Bumpy called to tell him the Yankees had won today .He managed a small smile shortly after that one...nurse Kathryn came paid him a visit. And then it happened ..A REAL DEREK SMILE !!!!! :)
It's now about 9:45 pm  and Derek is sleeping and having his first 2 can tube feed in a few days :)
We've ended the day with some very positive signs. It looks like it's going to be a bit longer recovery than what was hoped for. But we are now very very hopeful he will recover :)
Tomorrows a new day stay tuned:)!!!

THANKS TO ALL OF YOU !!!--------------- FOR YOUR WORDS /THOUGHTS OF SUPPORT !!!
jimmy d

P.S. As of the time i finished writing this,his catscan results weren't available-should have it for you tomorrow

9-14
AM
We had a good night went to sleep around 12 ish .And Derek and I slept  straight through till 6:00 am :)
His vital signs are all back to normal and and he back to flirting with the nurses. Almost BACK TO NORMAL !!!!
We got some of his test results back...catscan came back showing no issues, the kidney function test showed some decrease in function-but the say it should heal in time. Also some of his blood work showed that he is some malnutrition issues .So nutrition is going to pay us another visit.
Also had Derek in his wheel chair for about 45 mins this am- He did AWESOME !!!.
Still not sure if they'll still do his sponge change tomorrow. Ortho doc got back to town today and has not stopped in to see us today.
Will update you later :)
jimmy

PM
Uneventful afternoon for a change. He rested comfortably and they have decided to do the sponge change tomorrow morning at 7:30.
His afternoon fever is back but that's expected so he was a little uncomfortable but not bad. He's had a full day of feeds to prepare for tomorrow and it's 7 p.m. now and he's starting to get very sleepy.
Keep your fingers crossed for no surprises tomorrow.
Good night.
Linda :)

9-15
Derek is now back in his room at 4:00 after a long day. His procedure started around 7:30 and they said he's making progress and they can even see some new tissue which is a good sign. In recovery he had some issues with his heart rate and a high fever so they had to keep him longer. He now has gone up to 4 pumps in his back but a medicated sponge as well. Tonight's activity is rest and rest. Hopefully tomorrow they want to address his nutrition needs now that his med needs are in place. Derek is now sleeping .Lets hope he gets a good nights sleep :)
Thanks for all your support :)

9-16

Well what an awesome start to the the day...Derek laughing!!!!
He was flirting with the night crew...

Click on pic for larger view
We had a good night .All his stats are back to normal We hope to get him up in his wheel chair today .
Other than that not much else is planned for today. Derek is doing much better recovering form this surgery verses his last one :)
Will have another update later today .
jimmy
PM
Derek had a quiet afternoon of watching TV. Seems to be comfortable for now and is getting sleepy but watching the Red Sox/Yankees game so won't go to sleep.
His pumps are still working fine and so they have decided when they empty a full cartridge from the pumps they will now increase his IV fluids to keep his heart rate in a better number and to not let him get behind in fluids.
Other than that, it's just business as usual and the healing is still taking place. Boring is kind of nice for a while!!!!
linda

9-17
AM
Derek had a good night. Slept between the visits from the nurses and didn't seem to be in pain so they didn't need to give him the extra pain medicine which they will now stop and remove today. He's now resting and watching TV and waiting for them to come in and put in a new IV to replace the two he lost yesterday and draw blood at the same time for his daily testing. No fevers through the night which is a good sign.

Click on pics for larger view

9-18
AM
Was a good night all slept well... it's now about 6:45 am and were relaxing and getting ready for another fun day.
We hope to get Derek up in his chair for  a longer time today. Also we hope to find out when Derek goes in for another back clean-out. Will let you know :)

Click on pics for larger view

9-19
AM
A quiet night for Derek. Just staying in a routine of being turned through the night and having his medicines. In between he manages to sleep. Fever is up a little but not as high as it had been.
Woke up this morning uncomfortable with the fever but has now been bathed and is resting again and the fever is now down. No plan to change anything yet or do anything today.
PM
Doctors came in and want to find the source of the infection, so he'll have more blood tests today to compare to yesterdays which aren't in yet and more urine test and a chest x-ray.
It's now 4:00pm and Derek is resting. We hope to get him up in his chair later.
Will let you know when we get any test results.
 

9-20
AM
A so-so night. Still having fever issues? This AM's temp was 102.
All of his blood work came back ok as did his chest x-ray There trying to rule out possible causes Bacterial/Viral etc...
Then upon inspection of the surgical site in his back this around 8:00 am .We noticed some redness at the stitch sites and some discharge coming from the lower part of the wound. We have a page/call placed to have the Ortho Dept . come up and have a look and decide what they'll do .Possible wound  re-entry for cleaning could be on tap for today ?
Will keep you posted.
Derek is resting and watching a Star Wars movie.
jimmy
PM-1
We've had better better days...
Here's the scoop as of 1:20...A different bacteria was discovered in one of his cultures from this AM. Were  waiting for the Infectious Disease dept to assess what would be the best antibiotic for Derek at this time. Ortho Dept. also paid us a visit to look at the drainage in his back. And it was decided that since he is scheduled for a clean out /sponge change tomorrow morning that additional dressings be applied to limit drainage.
Derek has also just lost the only "IV" that was being used to administer his antibiotics. At this time we are working on getting it replaced.
jimmy
PM-2
Good news... They got a new "IV" in Derek so now he can continue with his antibiotic treatment. And  the Infectious Disease dept was in to see Derek as well, And it was determined that a sample of the infection will be taken during tomorrows clean-out to better assess just what bacteri are causing the infection. And together with the kidney people, determine what  antibiotic will work best, And that will be the least harmful to his kidneys.
His surgery is scheduled for 1:00 pm tomorrow (moved from the am ).
Will keep you posted.
I want to take this time to say THANK  YOU ALL for  everything.
We couldn't  have made it this far  without all the support we've received from each and everyone of you
THANKS !!!!!!
Derek ,Ryan, Linda, Jim

9-21
AM
Derek had a busy evening. The infectious disease people came in and changed his antibiotic to give him 2 now until they figure out the new infection that is draining in his back. Then he lost another IV and they put a new one in which lasted 6 hours so then he had another put in. His fever remains constant at around 102 deg. F so they give him tylenol to make him comfortable. He sleeps when he can. The orthopedic doctors came in and have scheduled another back clean for today around 1 or so. They'll clean it out again and get some samples for testing to determine the best antibiotic. They think the drainage is due to the pump not working properly anymore and they'll try to fix that. In the meantime, they need to keep his antibiotic strong and monitor his kidneys for any effect. To do that, he'll need to have blood tests every day (sometimes 2X per day) while they resolve this. His arms are bruised but he keeps managing to give them blood and not cry. He makes us strong for him.
The plan is after his procedure they'll give him some pain medicine through the night and hope he has a better day tomorrow.
PM-1
Well it's now 3:30pm and were still in a holding pattern. Will have an update later this evening.
PM-2
It's now 6:30 and Derek is now in the "OR"
Will let you know as soon as we get back to his room.
PM-3
Well it's now 12:30 am on the 22nd.And were back in the ICU again (room #24), and Derek is resting comfortably
The surgery took a bit longer than anticipated. As there was a substantial amount of infection was encountered. Dr.Snyder decided not to close the wound and he still has 2 vac-pumps attached. A number of cultures were taken and were sent off to the lab to be analyzed we should have some results in a few days .In the meantime the Infectious Disease dept has decided to keep on the new antibiotic regimen he started yesterday pending the results from the new cultures. Looks like were here at Children's for at least another week or two --back to square one!!!
Will let you know when we get culture results..

9-22
AM
Was a tough night. Derek was in some pain. We finally got it under control at around 3ish and from then on he was sleeping on and off. But the good news is his temp is down to 99 .We're hoping to to get out of ICU at some point today as all his vitals are where that should be and holding :).
Will have an update later today.
jimmy

PM
Looks like Derek will be in ICU for the balance of the day so that can monitor him on a 1to1 basis.
He is awake and watching football :)
He also had a "PIC LINE" installed today as well.
It's a more durable version of an IV line.
So for now he is stable with no fevers to speak of :)
jimmy

9-23
Derek is in some pain now and I think getting tired of everything so more irritable at times.  They are giving him a few transfusions to replace what comes out of the back and he seems to tolerate that and his skin color looks better as well.  Finally was able to get some relief from the pain when they got him enough medicine and suctioned him out to breathe better.  He fell asleep finally around 10 only to be woken up when the baby in the next room was having issues and the alarms and lights all went on.  Settled down again and then the same thing happened around 2.  Got up for the day around 7 when the doctors came in and checked his back which looks good so far.  No fevers which is a good sign.  They say he might be able to leave ICU today but they are waiting for a room on one of the floors for him and none are available.  Ryan is in for a visit and Derek seems very happy to see him.  Next plan is to get another back cleaning probably around Tuesday.  Hoping to give him some nutrition before then.

Click on pics for larger view

WE'VE MOVED!!!!
Room 9117 
on 9 south
phone # 1-617-355-3938

9-24
AM
We had a great night all slept well.
It's now about 8:00 and Derek is still sleeping :)We are working on getting his feeds back up to speed .In order to pump him up for his next clean out on Mon or Tues..? Will let you know when. When we find out.
All his stats are great with no fevers :)!!!!
Plans for today... football,football and football-GO-PATS !!!

Check out the new cards page-click here
PM
It's been a quiet day Derek slept through most of it.
Not to worry though there have been no changes in any meds that would cause this. Given the fact that he's not slept well since his last surgery , I think that now that the pain has subsided his body has decided to do some catch-up on sleep. As of this writing Derek is awake -just in time for the Pats game :).We also got him on his regular feeds even had some mashed potatoes and gravy for super :)Still waiting for word on if he has his next clean out tomorrow.
Will keep you posted
Futures so bright we gotta wear shades... :)
 

9-25
AM
A so-so night. Had some issues with the vac pumps. Derek developed a case of diarrhea overnight most likely caused by the antibiotics. Also has a yeast infection in his groin area cause by antibiotics. Wound care is coming up to advise on how best to treat the yeast infec.
We currently treating it with Nystatin cream. Also we are still awaiting word on when his next clean-out will be.
We know it's not today...Will keep you posted... :)
Jimmy

Click on pics for larger view

9-27
AM
Had an ok night -the usual nightly activity...)
Derek has been scheduled for his  next clean -out at 1:00pm today
Will keep you posted :)
PM-1
Well it's now 5:20 and Derek went in around 3:30 but was delayed for something in the OR so they are just starting.  It'll be a long night and they have him as a ? for ICU so not sure where we'll end up but we'll update you later tonight with the news when we know how he is and where he is.
PM-2
Derek did very well ;)
GOOD NEWS!!!
Doc says there was very little in the way of infected  material present .In fact the doctor said that there even signs of his body repairing itself :).,So the plan as of tonight is do another clean out sometime early next week. And based on we the doc sees then ,may even begin to start closing the wound . He still has no fevers. As of 10:00 pm he was resting comfortably back in his room on 9 south-not in ICU :).
Sorry about the late update...been a crazy day :)
Will have more tomorrow.

Thanks for your thoughts and prayers.... they're  working !!!! :)
jimmy

9-28
The news gets better and better. Derek had a good day today. He's a little uncomfortable but he's tolerating it well. Had a nice sponge bath today and I washed his hair so he looks better again. He tolerated having his leg braces on to keep his hips in line for short periods of time. Eating again. Even enjoyed a cupcake today. Nutrition came in and said even those tests are coming back showing some improvement so we make no changes. No fevers as well.
Keeping fingers crossed that he just gets better and better waiting for his next back wash which is right now scheduled for Tuesday.
 

9-29
Derek's had an OK day so far.  Even got out of bed for a little while and sat in a chair watching TV.  They weighed him and of course he's lost weight but we're working on helping to put that back on.  Had his usual PT and did good for her.  Just to help him, his cousin Jaime has come back to the hospital as well and is on our floor a few doors down.  Maybe the family power can work on both of them for now.  They put him back on his antibiotic that they thought they get rid of, just to not rock the boat and keep him heading in the right direction.  They will now give him something for the diarrhea.  Other than all the medicines he now gets and the noises of all the machines he's attached he sleeps when he can and even now takes day naps.  He looks better though - has retained his coloring.
Linda

9-30
Had an OK night.
Ortho came in and had to do a quick repair of his back dressing. Also the plan is to get him up in the chair for as long as possible. Other than that the days activities are to relax get his nutrition back up .in preparation for the next "OR" visit. OH! and watch football, football and football !!!! :)
 
Click on pics for larger view
jimmy

10 -1
Good Morning everyone....
We had an awesome night. Derek and I had a good nights sleep (we must have been tired from all the football yesterday). Had a low-grade fever last evening (99) but has since gone away -was a small scare :).As of the time of this writing we are waiting to see if  Derek will have another transfusion to help replace all the blood that he is losing through the vac-pumps.
Also had an IV removed  this AM .from his left arm :)all that's left in his arm is the Pik- line :)
The plan for today... is get him up in his chair for as long as he can do it (was sitting yesterday for about 45 mins )
Will try to sit longer to today :)
Get him as much to eat as possible... OH and don't forget.... FOOTBALL!!!! :)
Thanks to everyone for checkn' in on us :)  :) :)
jimmy

Click on pics for larger view
 

10-2
Another quiet night, slept well. Derek had an other transfusion to replace all the blood he's losing through the vac-pumps. Today's plan to get him nutritionally pumped up in prepped up for his next clean out. Also  get him in is chair as well.
jimmy

10-3
Sorry we haven't updated till now....It's been a day of waiting .Derek finally went to the "OR" around 7:00 pm.
Will have an update after the procedure.
STAY TUNED :)

10-4
AM
Well it's been quite a night...Were back in ICU just as a precaution. For some reason Derek's after surgery pain has been difficult to control .So given his past history with pain meds. it was decided that he could be better managed with some one-one attention  here in ICU. As of this writing Derek is resting comfortably though still having some spasms witch should subside as the day progresses. As for the the clean out procedure- it went  extremely well !!! In fact this is the first time Dr. Snyder  has been smiling when he walked into the room to say how it went . No more infection and the doc has even begun the process of closing up the deep muscle tissue :) The plan is to have another surgery next week. And perhaps begin  to start closing the wound. So the plan for today is to get back into another room out of ICU.( We are no longer on the ninth floor!!!). Once it was decided that he was going to icu. His room on 9 south (9117) was needed for someone else. So at 2:30 this AM I had to clean out all Derek's stuff. Will keep you posted on the Dudes new digs' :)

10-5
NEW  ROOM INFO.
 9 south Room 9121
Phone number is 617-355-3952
Well at 11 last night we made it out of ICU and back to 9S . The view isn't as nice but he's happy to be here. Started out in pain and trying to sleep with everyone new now having to check him out. Managed some hours together and woke up this morning and is smiling a little at the nurses he knows. Had some low grade fevers through the night but we'll see how he does when we are able to get him moving and washed up and feeling better.
Linda

10-6
Derek had an OK night. Some minor pain issues but seemed to be able to sleep more after they shifted his position. They changed his pain dosage and increased his valium. Woke up today and now his feet are swollen again so I'm waiting for them to come take a look. Had a nice bath and he's sitting in the chair while they change his bed sheets. Drew more blood for testing and he may be getting another transfusion later today. The order for the week is let him rest and eat and be ready for more checking of his back next Thursday.
Linda

10-7
AM
It was an interesting night...for some reason Derek's left leg and foot have swollen to about twice the normal size.
So last night at around 11:00 pm we took him downstairs for an ultra sound to check for a possible blood clot but none was noted. Also had an x-ray done to check for a possible bone fracture caused by his malnourishment -no breaks were detected. Got back upstairs around 1:00 pm . It wasn't until 2 ish  before we all got settled. Woke up around 7:30 am . As of this writing Derek has had his morning feed ,been bathed , and is feeling good and flirting with the staff. His leg doesn't appear to be to uncomfortable for him. No fevers. So now we are waiting for the doc's to make rounds so we can quiz them  about his leg. Will let you know .So the plan for today is eat, eat, and eat to get him ready for next week .Also we are going to get him up in his chair for as long as he can tolerate it. And watch sports all day.
Will have an update later today when we find out about his leg issue.
jimmy d
PM
Was a quiet day worked on his nutritional needs had some egg salad for supper and some vanilla cake with choc. ice cream for dessert. As for the swelling in his left leg. It seems to be going down :) the docs say it was probably due his protein count being so out of order .As of now we are watching baseball and chillin':)
Have a good night :)!!!!
jimmy d

10-8
Sorry for the late up date....We had an awesome night went to bed around 10 pm. And got up at 7:30 am :)
Derek had his usual morning feed plus some choc. cake for break fast . then we got him up in his wheelchair .We drove around the block on the ninth floor a couple times. Then decided it was boring so we drove down to the lobby downstairs. Once there Derek saw the Au-Bon-pan coffee shop and got very exited soI asked if he  want to go "shopping" he said yes so we went in and he picked out a blueberry yogurt for later. I gave him the money to pay for it and went to the register -He was so proud of himself !!! :)
By the time we got back up to the 9th floor it was time for lunch. He had some blueberry yogurt ,and his usual tube feed as well as some Carnation instant breakfast drink. This afternoon we just hung out and watched the Pats game.
All in all Derek was in his chair for about an hour today :)
The focus this week will be on his nutrition!!! The nutrition dept should be coming by tomorrow to offer suggestions on how we can boost his protein intake.


Click on pics for larger view

10-9
AM
We had a good night ,all slept well...Today's plan is to continue working on his nutritional needs. And getting him back up in his chair. The nutrition folks are suppose to come by today to offer ideas for pumping him up more. Will let you know as swoon as we do:) As for his leg issue from the other day it seems to be resolving it's self though ever so slowly... his leg is most back to normal.
Thanks for checkn' in with us this AM :)

Click on pics for larger version
jimmy d

10-10
AM
Nutrition saw Derek a couple times last night and it was decided the best plan might be to keep his number of feeds the same but change the formula to something that’s 100 calories per can more. Started him last night and he seemed to sleep OK. Very hard waking up this a.m. and seemed to sleep more. Then as he was waking he vomited a bit. Called in the doctors who said to try to feed him slower – it will take about 3 hours now per feed. This may mean Derek is now eating all day (wouldn’t we all like to try this), but we’ll see what happens. Pain people stopped by and I mentioned I thought he just slept a lot so we’ll decrease his methadone and see how that works (but keep it ready for Thursday’s procedure). They took blood for pre op and he did fine. Slow morning getting things resolved but hope to get him out of bed in the afternoon and make him just feel better not being in bed all day.
linda
PM
Derek got up in his wheelchair this afternoon for an hour and had a blast cruise' around the 9th floor :) .
Had a blast!!!
jimmy d

10-11
AM
Well guys. We had another good night :)
Today's plan is to continue working on getting him ready for tomorrow. (We don't know what time he's scheduled for will let you know when we do .) Also word on the street here ,is there is some kind of a show going on today downstairs-so we plan on getting him in his wheelchair  to go see it .It's at 11 am .Derek is very exited about it :)
Will let you know how it was later today ;)
Have a GREAT DAY!!!!
jimmy d

10-12
AM
Derek went into surgery about 8:00 a.m. after an OK night. Lots of beeps from his IV machine but he did OK sleeping.
Surgery completed around 11:30 and the good news is that it still looked good and clean and so they have now stapled his back shut with many, many staples. They put in some drains for now as well. Needed more blood so I haven't gone into post op yet to see him but should within the hour and see where he goes from there.
Will let you know later where we end up.
PM
We are back in our room on the 9th floor. Derek is doing OK. The pain is coming as he wakes but they are giving him the medicine and he seems to relax after and sleep in between. Will just stay quiet for the night and hope to feel better in the a.m.

10-13
Derek did OK through the night. Lots of turning and uncomfortable but the nurses kept up with the turning and giving him some pain medicine. This morning we got up around 7 and the doctors came in and pain is removing the pump machine and putting him on a set dose which lasts longer in his system. His methadone will be reduced to 1X per day again. The skin team will be in later to look at his back from the removal of the tape and see what they can do to help his skin heal and keep those from getting infected. Also want to make sure the bandage on his back stays in tact but not too low on his skin. He's back to normal feeding and so the plan is to just continue to let his body heal itself now that the back is closed and watch everything closely.
Also ..Derek was in his wheelchair  for an hour  this afternoon :)

10-14
AM
We had a great night all slept well.
Today we'll get Derek up in his wheelchair and perhaps see if we can take a walk outside once it warms-up a bit .
As for his skin issues we are working on it  with the tried-n-true Nystatin ointment.
So also today it's eat, eat, eat... and football !!! :)

10-15
AM
It was a crazy yesterday afternoon and night...
Derek started  fevers again-102ish. So they took more blood work as well as a urine sample in an effort to determine the cause. Also the dressings on his back were beginning to peel off and leak. So the Otho. dept was contacted to come have a look .But weren't able to address it until 3:00 this am  -due to a heavy "ER" night.
As of this posting Derek has been fever free with no aid from Tylenol since midnight :)Lets hope that it was  your basic run-of -the -mill viral thing. And not a bacterial issue-so far the results that we have are showing not thing bacterial. Will keep you posted.
As for the plan to day...Watch for temps, get him up in his wheelchair. And work on his nutrition stuff...choc. cake, puddings, and anything else we can pump him up with :)
Oh!!! and FOOTBALL!!!!
jimmy d  And the smiley guy...
PM
Well it turned out to be an ok day. Still running low grade temp. So far nothing has shown up on his blood work.
Then the back dressings started leaking at the top as well as the bottom part. So we put some temporary dressings on and Ortho will be by tomorrow to redress his whole back. And the "PIC Line" (pic line-a more permanent intravenous line) people came by to take care of some line issues.
On the lighter side...
We did go for a walk around the hospital today even went outside to the garden area .Derek loved it-just to see/feel the sun :).Also we went to the Au-Bon-pan coffee shop to go "shopping" so we went in and he picked out a vanilla yogurt for later. I gave him the money to pay for it and went to the register -He was so proud of himself
 !!! :).The rest of today we just hung out and watched football

Click on pics for a larger view

10-16
AM
We had a good night. All slept well. Still having low-grade temps? So the plans for today are: Hopefully get some results from the blood work from this weekend, to see when Orto. is going to come by to change the back dressings.  And get him up in his chair.
Thanks for checkn' in on us :)!!!!
PM
A set back...
So far this afternoon his fever is back up to around 102 and they have taken blood from his arm, blood from both ports off the pic line and more urine to see if anything comes back with these as to the reason for the infection.
They have ice packs under both arms to bring the fever down and have given Tylenol and still wait for ortho team to change his dressing and maybe take a sample of that and see if they see anything
 

10-17
Ortho changed his dressing last night and could not see any leakage from any spot which is a good thing maybe.
No results on his blood work but the chest x-ray came back fine. The fever went down to a low grade temp of around 99 starting around 9 last night so this morning the infectious disease group was in to see what they thought. We think we've checked everything we can check to see the source of the temp. No changes yet. Need ortho back again to secure the new bandages which are coming off already.
So far today they took more blood again to see how that is doing. Gave him a really nice oatmeal bath for his spa treatment. Will get up in his chair later this afternoon with Dad cause he's watching a movie now and everyone keeps coming in to check him.

10-18
Derek's roller coaster ride continues...Good news!!! he hasn't had a fever since yesterday :)
His temps have been holding steady through the night at 98ish...
The Ortho doc. and the Chief of Infectious Disease stopped by last evening to say that so far nothing is growing in his cultures. And that they think that Derek's past fevers and low white cell count can be attributed to the antibiotic he was on.
The plan for to day is to have his back dressings changed. Get him up in his chair for as long as he can tolerate it.
So now the longer term plan is to monitor his temp. And if he stays fever free. Dr.Snyder will take out every other staple on tomorrow  and go from there as to when he may be able to (dare I say) come home.

10-19
Derek slept OK through the night. In some pain when they have to lay him flat to change everything and put on his medicine and he screams but is able to relax when they are finished.
The decision is still to remove every other staple today and will probably do that this afternoon, but will not remove the drains as they are still putting out too much liquid. Then we just wait and see again what the next step is.

10-20
The night didn't start out good. Derek got his flu shot around 8:30 p.m. and around 9 started to vomit for about 20 minutes. His body was very sweaty and clammy and he was very uncomfortable. The nurses and I cleaned him up just as his favorite doctor Matt came in to check him and all was fine after that. He slept pretty good after that and they left him alone to keep his stomach settled.
This morning we got up and Derek had his daily spa treatment and then we got him out of bed and we were cruising around for a while. His drains are still putting out too much for them to want him home, but his blood levels are on the up as well as no fevers now again for 48 hours. He's cruising for the day with no tests at this time scheduled.
Sad news - Doctor Matt is finished his rotation today and must say goodbye. Derek and I made him a card but it's sad to see him go cause he is so good with Derek and we will miss him every day!!! Now he won't have anyone who wants to fight with him:).

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10-21
AM
We had a good night :)
The plan today is to get him up. There is a dog show taking place down stairs this Am . W e plan on going to check it out (maybe we'll have some pics ). and watch the Baseball game this afternoon :)-GO TIGERS !!!!
No fevers. All his blood work says he's on the upswing !!!!:)
Will have an update later today.
Thanks for checkin' in on us today.
jimmy d


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10-22
Had a great night...accept for the Tigers game!!
No fevers. We plan on getting the Dude up in his chair today and just hang out and watch the Pat's game.
Sundays are so lazy around here :)
Derek is doing GREAT !!!:)
HAVE A GOOD DAY !!!

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10-23
Sorry I didn't update. Everything is OK )
By the time I got home from Ryan's football game. After being with Derek for the weekend .
I just crashed....
Derek had a good day :) Got some PT from his friend Katie

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jimmy d

10-24
Derek had a good day today. He got up in his chair twice today.
As of this writing we a waiting for the Ortho Dept to come up to remove the staples from his back. Should make him more comfortable ...plus it's more step closer to home. Not sure when it will be though .
jimmy d

10-25
We had a good night. No temps:)
Still waiting for Ortho to come up to remove the staples from his back.
So the plan for today is to hang out  and work on pumping him up. He has the diet we can only dream about:)
Choc. cake ...ice cream etc...
Well that's about it for now- Thanks for checkin' in with us today
If any thing else happens we'll be sure to let you know.

10-26
Ortho came up and removed all staples and as usual Derek was a trooper.  They left the drains in since they are still putting out.  They decided we could go home like this and finish our journey from Dracut.  We were very excited but it took a long time for the paperwork to finish and we never left Boston till 4:30.  Joyous homecoming at home by Ryan and Ashley and Derek was so happy to see them both and be in his own home.  Had some visitors last night and Derek made some phone calls.  Very busy night for Jim learning to give Derek his medicine with the help of the Lowell VNA.  They will come over 1 time per day for about a week to make sure everything is OK with his medicine and then come 1 timer per week to do his blood test and change his pic dressing.  He needs to go back to the doctor next week to see if we can remove the drains and in the meantime we just record per drain how much comes out.  The nurse left around 10 p.m. and Derek quickly fell asleep in his own room and slept till about 9 a.m.  I was so good to see my family all home and Ryan loves him so much he wanted to spend the day with him and sacrifice going to school.  Isn't that so nice!!!!  Today was a quiet day getting use to the routine and Jim got up at 4 to start the medicine process.  We tried to organize our house again with all the new medical stuff we have for now and will need to figure out our schedule but it's worth it to have him home.  THANK YOU TO EVERYONE FOR ALL YOUR GOOD THOUGHTS.  KEEP THEM COMING AS WE TAKE THE NEXT PHASE OF THE JOURNEY.


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10-29
Sorry it's been a few days since we've updated...
Were working on getting him all settled into a daily home routine. He's doing awesome!!!
He is spending a good part of the day sitting in his chair.
We've had plenty of visitors as well 

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11-4
On Wednesday 11-1 we brought Derek in for a planned visit to Boston  to have his dressings changed (the upper dressings were removed but the lower one was changed) and drains removed. All went well. He was all cleared to return to school on Monday:) On Thurs the VNA came out to check on his wounds now all closed-up (or -so-we-thought) and we noticed he was running a low grade temp-100ish. Upon inspection of his lower back we noticed that the first 2-3 inches of the wound appeared to be a little reddish in color with some miner discharge so we made contact Boston to get their opinion .And they wanted to see him so we brought him in on Friday 11-3. The nurse there, as well as us, suspected the beginning's  of another infection . Dr Snyder was contacted and sadly- he too agreed. So Derek was re-admitted in preparation for yet another surgery this AM .
Derek went in for his surgery at around 7:30 this AM. It took approx. 3 hours. Dr Snyder was very happy with what he saw. The infection was only superficial:). So Derek now has a wound-vac attached to him -just like before. The plan is to keep that in until this Thursday then at witch time (depending on the infection) have the vac removed. And re-close him.
Stay Tuned the Saga continues....:)

Room 1020 (1-617-355-3157)

11-5
Derek had an OK night after his procedure. He is not suppose to be on his back at all so the nurses came and turned him every few hours from one side to the other and he seems to prefer one side to the other so for part of the time he isn’t very comfortable. He’s trying to get back into the hospital routine and let the nurses check him but not actually wake up and talk to them as he did around 3 this morning. He wanted them to know he was awake if they wanted to chit chat with him and pass the time. He is such a flirt. He still has a fever so they’re watching that and giving him Tylenol which brings it down. He had some pain medicine to fall asleep but when he awoke today he didn’t seem to need it. He is really not allowed out of bed yet so we just hung out and watched TV. The nurse gave him his bath and changed his bed and he is back to his regular feeding schedule already. He took a nap and waited for Dad and Ryan to visit.

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11-6
Had a good night :)
Still having small fevers-100ish .Had Pic line dressing changed this AM .Still waiting for results from some blood cultures to see what's causing the temps. Otherwise Derek is doing awesome :)

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11-7
Hi. The update for today is that he had an OK night of sleep. Lots of pain during changing time but not sure if that’s the drain he is one when he’s on his back or the soreness of his butt. They are trying a different medicine for the temperatures and discontinuing the one they started when he was admitted since it gives him a rash each time. We spent the day with some very special visitors – Dr. Laura stopped by with a Patriots balloon and Dr. Matt stopped by as well. He was very happy to see them both as his friend and not as his doctor and was all smiles for both of them. They are very special doctors who Derek loves a lot now.
linda

11-8
Derek had a busy day getting ready for his procedure tomorrow afternoon.
The doctor said it would be good to have him on his stomach which he hates but Nurse Mike figured out a comfortable way for him to do this and he even fell asleep while in this position.
His IV line isn't working right so he had to have an x-ray in the middle of the night to verify that and tomorrow they will fix it but for now they can use it as a regular IV.
He gets out of bed a few times into his wheelchair for some different scenery and enjoys that.
Keep your fingers crossed for tomorrow in the hopes that they close him up again.

11-10
Derek finally went down around 5:30 for his procedure. He was nervous when he got there and immediately started to gag, but now everyone knows him and calmed him down as best they could. Dr. Nimec was there to greet him so she drained his baclofen pump and replaced it with saline while we wait for him to totally heal before attaching it again. Then Dr. Snyder took over and removed the sponge and stapled his back up. No drains this time. We were back in our room by 10:00 that night and the pain was there but they knew what he needed and gave it to him. He slept OK through the night. A few moans and groans but he was able to go back to sleep after. Slept till around 8 and then woke up smiling. His blood levels may be low and he may need some blood later so the blood people came and took some for testing and we await the results now. He's smiling and happy and all clean for the day so we just have to keep him quiet and keep his temperature down today. Quiet day of bed rest.

11-11
Derek had a great night slept well. And woke up in a good mood :)No fevers :)
He had his 2 transfusions yesterday and is doing much better.The plan today is to get him up and about in his wheelchair. And watch football :)
THANK YOU for checkin' in on us!

Derek went outside today :)

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11-12
We had an uneventful night- no fevers :) Watched football till 10pm as primer for today's Pats game:)
The plan today is to remove the "Foley bag". get him up and about. Watch the Pats game-GO PATS!!!
We have noticed that Derek is having an issue with his smile...It's been so big were having trouble getting him out the door!!!!! :)
Still no word on when we'll be coming home hopefully soon!!!
jimmy d

11-13
The Dude's back!!!!
We got out late yesterday.!!!Were still under fever watch though. So far he's good :)
He still has some staples in his lower back. We'll need to go back to Children's, sometime soon to get them out
Just a day thing though....
Felt great to sleep in our own beds last night... Derek is so pumped to be home!!!
The plan is to work on his "sit time" and work on getting some meat on his bones :)
WE CAN'T THANK EVERYONE ENOUGH FOR ALL THE SUPPORT WE'VE RECEIVED THOUGH OUT THIS LONG JOURNEY. Lets hope that's it's finally nearing an end...


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11-14
Derek had a great night, still no fevers :)!!!!
Still has some pain during transfers-but that should subside as time goes by.
We have to go back to Boston tomorrow to get the staples removed .Will keep you posted.
Derek made it outside today!!!

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11-16
Sorry we've not updated until now. it's been kinda crazy.. here's what's been happening.
We went to the appn't in Boston yesterday .It  went very good :) no fevers and his lower back is finally healing. We still need to wait till the 24th to have the staples removed.
We hope to send him back to school on Monday!!!!:)
Then last knight Linda and I had to go parent teacher night at the high school and we didn't get back till late last night. WE WAS POOPED!!!
Derek had a good day today we had visits today from the VNA to check on his wound .And PT came by to work on him.
jimmy d

11-26
It's been a busy time for Derek but he's progressing as expected.  Gave him some time at home to adjust to things and then he finally got his haircut .  He was glad to see his girl Melissa and was all smiles.  Then it was back to school part time.  He seemed nervous at first when we dropped him off.  Made some faces like stay away and don't hug too hard or hurt my back but then he was all smiles.  As we left him he was a little teary eyed but then recovered when we were out the door.  He did great the two and a half days he went. 
 Had a great Thanksgiving at Auntie Deb's house and got to hold a new baby that was there and she was adorable!  He even held the dog Carter.  Ate lots of food and watched football all day with the men.  Seems to tolerate being in his chair more.  Then on Friday it was more good news that we had expected.  His back looked good so they removed all staples from his back and treated his wound he has on his butt which seems to be getting better little by little.  Then they gave us unexpected news - it seems he's finished his 8 weeks of IV antibiotics and he's on to his new regime of two antibiotics via g-tube so they removed his IV and he was very happy about that. 
Selfishly Jim and I were just thinking what it was going to be like on Saturday to not wake at 4 and 5 for medicine.  Yahoo!!!!  We went home and undid the alarm clock for the first time in a long time and looked forward to a quiet evening.  For once our plan worked and we actually slept till around 8:30.  So, we need to watch now while he's on this new routine to see that it's working but we have our fingers crossed.
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