Big Surprise...NOT

Colonoscopy postponed until tomorrow morning at 9!

Dad has his chair positioned exactly in the near proximity to the throne so he doesn't have to go far. The colonoscopy scheduled for today did not happen...big surprise there, but this time it was because he wasn't cleaned out enough. I don't know how this can even be possible seeing that he hasn't eaten anything since SUNDAY!

I drove in today which was another hour and a half commute thanks to construction season. How do you know you are at a red light in Boston...with one second left on the crosswalk 20 people cross the street at the same time!

 It's Shark Week on the Discovery Channel. Dad and I watched this little shark guy go around Sea World and talk to people. My brother Joe who loves sharks definitly needs to look into this costume for next halloween!

Dad and I played cards for a bit while Mom went to Walgreens to do some shopping for a few things. It was so nice out and she really was happy to just get out and walk.

We had to interrupt our game for the IV nurse to put in a new IV which has to be changed every four days Dad was winning anyway :)

The renal doctor came in to let us know his renal number are continuing to drop they are now at 2.9. We are hoping to get back into normal range in the 1's They were 3.5 and above so at least they are improving!

Cousins Vickie and Gabby spent the day in the North End and visited Dad and Mom with some treats from Mike's Pastry!  Dad is probably going to eat all of this tomorrow because he hasn't eaten in so long!!!

Gabby sampled the "mini" lobster claw! If this is mini I would hate to see how big the "big one" is :) As my grandmother and Gabby's grandmother would say "God Bless her she eats good"

I have been watching this house for the last year out of the various rooms that Dad has been in. The roof was in such a state of dis-repair that I did not know how they heck they weren't getting soaked inside. Well I am very happy for them because they are getting a new roof! Mom said to me "I knew you would be happy they were finally getting their roof" She was right.

I went to work after my visit. I am pretty sure I could never commute to and from Boston everyday for work without wrecking my health and sanity! I am sad to say I yell like truckdriver and get very agitated. Mom always asks me when I yell at the other drivers if I think they can hear me. Well I hope they can't because I usually do not have anything nice to say to them :)

At work tonight we had a band play. They were really good. The lead singer was Crystal Livingston and she use to work in admissions at UNH and a few other schools. It was funny because they listed all of her schools and degrees and she is an incredible singer and could easily make her living with her voice alone. She has toured with several famous singers worldwide. The mic check they did was one of the most entertaining mic checks I have ever been involved in... " we're testin the mic, test 1,2,3...we're testin the mic, test 1,2,3, we're testin the mic...test 1,2,3. This was with the back up singers singing the reverb in the background and the band joining in! I asked if that was the song they always checked the mic with. She said they just made it up just now! Wow now that's improve talent!

Tomorrow the colonoscopy is suppose to take place at 9 a.m. we will see if it really happens! They have decided to remover the defib/pacemaker at some point next week but they are waiting hoping his kidney function will improve...Phew!

Thanks to everyone who continues to support us. Now more than ever the cards and visits really help Dad take his mind off things for a while. It may be difficult to top Lilly's card :)  He is in room 701 in the Shapiro Center of Brigham and Women's in case anyone is in the neighborhood and wants to swing by. 

Until tomorrow,

Laurie

A Few Tough Decisions

Today they came in to tell us that they think Dad's defibrillator/pacemaker should come out :(

Today started off as pretty routine. Blood work and the fun everyday stuff. He was going to just prepare to prep for the colonoscopy which was suppose to happen tomorrow. Then the bad news bear came in. This Dr. came in with the machine that interrogates the defib. unit Dad is using. He not only interrogated it he paced Dad's heart at a very fast rate to see what the unit would do. Dad said it was a workout! After that UN-FUN test they told him they didn't think he really needed the unit anyway and because there was a good chance that the unit is infected it should be removed...tomorrow! 

WAIT... tomorrow? Tomorrow is suppose to be the colonoscopy. After talking with this bad news Dr. I asked him why they would put someone in Dad's condition, with his kidney's struggling, in to a surgery involving anesthesia when that is very harsh on the kidneys? After I said it he said that's a very good question...well thanks but I am no doctor, why didn't anyone else ask this. His kidneys are just starting to recover why would you jeopardize this progress by taxing the organ further? Would you not reintroduce renal failure? 

So they make Dad sign a consent form then decide that because of the kidney situation that they need to have more discussions so go forth with the colonoscopy! SERIOUSLY they give you a migraine just trying to follow what is going on and keep everything straight. You have to be your own advocate for everything!

So supposedly they are doing the colonoscopy in the room at 9:00 a.m. I will believe it when it happens! Nothing is ever on time!

After this news I ate a gluten free chocolate cupcake and Mom and Auntie Janet split a pastry from Au Bon Pan. Lunch of champions. Nothing better than chocolate and sugar when you are knocked down!

Then the best part of the day happened. Kerry and the kids came!

Kerry, Lilly and Kylie picked some flowers from the yard at their new house to give to Papa. He loved them! 

What he really loved was the beautiful card that Lilly picked out at Target for him because it had a beautiful flower on it and was all sparkles! She said "Papa will love this" 

Yesterday she colored the whole inside and signed her name :)

Why the grin from ear to ear you may ask...

Now you know! 

Good thing she can't read yet!

Later... Julie told Auntie Janet and Grammy about her day

Then she joined Kylie on the couch for a big hug

Lilly jumped in too :)

Wait a minute...what do you mean we are watching the Lorax...again! Yes folks the Lorax is still on the  free movies on demand channel. It's been almost a year! They have added some more and taken others away but the Lorax seems to make the cut every time!

I left and went to work in the whirlwind that was my Day. I am slightly worried that the school year is three weeks away and I spent three weeks out of service because of my stupid fall.

I did have a appointment to day with a sports medicine specialist. She was awesome and I am looking forward to working more with her. She was able to get some of the joints and muscles to move pain free after a bit of time which was incredible to me. I only hope I can continue to strengthen and build my back back up quickly. 

Thanks to everyone for all the cards ( even ones for Mom and I ), calls, texts, e-mails, blog responses, food, rides, visits etc. I can never say it enough, without all of you there would be no strong us!

I am happy to report the blog had 88 views yesterday which means 88 people are able to check in on Dad and see how things are going. It's easier than making 88 phone calls. There simply are not enough hours in the day. This blog has been a Godsend and I am thankful to my professor Lynn Simmons who was instrumental in making this happen by teaching us how to blog in our Graphic Design classes.  A teacher never knows just how influential they are! 

Until tomorrow,

Laurie

Hurry Up...and WAIT

Today Dad was suppose to have his tooth extracted at 9:00 a.m.

That's how the day of waiting started

Because Dad was suppose to have the tooth pulled then go on the awful cleanse we had planned not to visit today. 

When I called Mom said he had been bumped to 11:00. So they waited...

Meanwhile back at the homestead...

Lilly and Kylie worked on the back of their placemats with washable crayons. Lilly traced the whole alphabet and counted the shapes and drew lines to the corresponding numbers! She was a wiz! Kylie watched Lilly trace her stuff then she colored in all her shapes :)

After we finished the placemats we decided it was a nice day out we should fill up the little pool...

...I couldn't find the frekin little pool anywhere no matter how hard I tried! Kids were all ready in their suits ready to go sunscreened up and Auntie Laurie couldn't find the pool. Now, I ask you what kind of Aunt would I be if I disappointed them?...

So I Improvised!

 Lilly in the toy bucket..Kylie in the baby bathtub! 

Lilly asked me if we were going to use "real water, or just pretend" When I told her we were going to use real water...she looked at me and said..."In the toy bucket?" I said "yeah",  "ok" she said, and the rest was history, in she went.

Julie got in on the fun too. She kicked her little feet in the water and had a great time :)

Julie looked all Suave in her hat :)

She looked so cute in her beach cover-up

So after lunch we called to see if Papa had his tooth out...

...they were still waiting!

The kids took naps and I did laundry that I have been neglecting for a while. I no longer look like a Hawaiian vacation. I hung up the Luau dress for another year :(

Kerry was very busy today painting their new kitchen, buying and picking up a new piece of furniture for the new house. Brendan went to Maine to pick up Kerry's car and work on a few things at the Maine house. They are making great progress on the new house and I know they can't wait until it's all done and they are moved in. I will miss having them all here. The kids make my day and are the best at taking your mind off stuff. 

Kerry came back and I went to work.  I called Mom a little while later at 3:30...

...they were still waiting! 

They were on their way downstairs to where they would pull the tooth and Mom had to go to because they didn't know how long he would have to wait once he got into the room!

OMG I would have pulled my own tooth at this point!

I called her at 7:00. She said the extraction was uneventful and the tooth came out pretty easily. Unfortunately it is one of his front teeth so that kinda stinks. 

THE GOOD NEWS TODAY

His renal function did improve...yay kidneys!  I think the prayers and good thoughts are working the miracles we are asking for. If they continue to improve over the next three days they are not going to do the kidney biopsy!!! WooHoo!!!! Cross your fingers and let's hope this is one positive outcome of his visit. Here's to hoping that his kidneys will function normally again. 

Thanks to everyone who has been calling, texting, writing, sending cards, visiting offering to help in whatever way they can. You are all so invaluable to us. We could never get through this without all of you! I pray every day that each blog entry gets us closer to a new heart and a new life, one with a lot less worry and a lot more happy days ahead.

I saw this quote a while ago on the internet:

"What a wonderful thought it is that some of the best days of our lives haven't happened yet." 

I don't know who said it but it's something to look forward to!

Until tomorrow,

Laurie

Ups and Downs

I know I usually say nothing happens on the weekends but we had all kinds of doctors in today!

This is what the street looked like on my way to Dad's room. Just another sunny summer day.

Today was full of ups and downs. 5 or 6 doctors visited with Dad today. The electrophysiologist fellow came back in and said that they were still in contact with his cardiology team and they were still discussing the possible removal of the defib/pacemaker. I thought yesterday we were over that and we were not going to do it. Ultimately Dad will be the one who makes the final decision. He doesn't want it out and I don't think it is wise to take it out and think about putting another one in to also get infected by the infection that will remain in the pump. I did some research and there are not too many cases where someone gets infection in these devices 10 years after they have been implanted. They said they are not familiar with this scenario themselves so they are still talking about and discussing it.

After this not awesome news Dad took a snooze and Mom and I went to the gift shop just to get out and about and out of the room for a bit. My friendly neighborhood gift shop did not disappoint and made us laugh and smile for a little bit.

                                 

There were some great new soaps! Soaprah Winfrey Soap ( you get a bubble, you get a bubble, you get a bubble...everyone gets a bubble!) It's a pun on her "you get a car, you get a car, everyone gets a car" giveaway.

The other new soap will be great for everyone. It kills all sins on contact! Imagine a soap like this!

I also managed to pick up a Bell bicycle helmet for the small price of $7.50! I thought it was a typo! I needed a new helmet and the price was right, so I bought it!

When we got back up to the room Dad had the Red Sox game on and we watched some of the game until the next doctor came in. This one did not have great news. He said Dad's kidney's are stable but bad. They have not turned around and they want to do a kidney biopsy to see if the acute renal failure is irreversible. Right now we need a whole lot of prayers, if the kidney biopsy on Wednesday or Thursday shows his kidneys are incapable of recovery he will also need a kidney transplant! We were very discouraged by this new news. 

THE GOOD NEWS

Dad is taking it one day at a time. His white blood cell count is at 10.3 so that is on it's way back to normal which is great and the real important thing is his blood cultures came back negative which signifies no significant source of the superbug they are trying to kill!

Tomorrow he is scheduled for a tooth extraction to pull the infected broken tooth of which does not ache at all. Then he will start the dreaded cleanse or (colon blow as he calls it) drink which will clean out his system for the colonoscopy on Tuesday. The type of superbug they found is commonly found in the gut and intestines. They are still trying to find the source of the infection. They may never find it they said in which case they will assume it came from the gut and/or intestinal region. 

After the game Mom and I looked out the window to see a rainbow! This was the helicoptor taking off from the building next door under the rainbow!

This has to be a good sign!

Lastly we were greeted with a beautiful sunset after the rainbow. The one good thing about the hospital rooms are the great views. It makes it a little nicer place to be in with a view like these.

So that's all the news I have for today. Stay tuned for tomorrow's entry where I will fill everyone in on the latest news that's fit to print.

Thanks to everyone who has visited, called, sent cards, brought food, texted, offered to help and all the little things in between. We can't thank all of you enough!

Please Keep Praying!

Until Tomorrow,

Laurie

Weekends

Another day in the hospital and it's the dreaded weekend!

Weekends in the hospital are bad. Summer weekends in the hospital are worse. Yesterday we had to wait 37 minutes for someone to come after we rang the call button three times!

At least there is nice artwork to look at on the walls. This time Dad is in the Jasper John Hallway.  I actually saw Jasper John's work when I visited MoMA this past Spring. 

Dad had no significant updates today. It's the weekend after all and unless something critical needs to be done, nothing gets done. It makes for a very boring day. 

My cousin Steve drove my Mom back in to Boston this morning and visited with Dad. I caught up on a little sleep then did a little laundry. 

Today was a day I was looking forward to all summer. My friends Marci and Brian have a BIG Luau every year and I haven't been able to go for the past few years. This year I was determined to make it by hook or by crook. It was so great to see everyone. There are so many people who I hung out with in our CYC group growing up and it is always fun to catch up with everyone. It's fun to see how big their kids get and how grown up they all are. I wore my Hawaiian dress that I wore at the Luau I went to in Hawaii!

This is the pattern on the dress :)

Michael "Toby" Tobas is a steel drum and percussionist that they hire to play authentic calypso music every year for the Luau. He is awesome. He played with Harry Belafonte and toured internationally with Mr. Belafonte for five years (1972-1977). Toby appeared on two recordings with Harry Belafonte: "Turn the World around" and "Belafonte live in Japan". Here's a video clip of him playing.

Toby is such a nice guy and hung out for a little bit afterwards with us for the festivities.

They had contests, games and prizes all day long. They also had three huge blow up houses, a bounce house, water park and baseball pitching tent. In the back of the barn they have a basketball court that the kids played on all day too. Their dog Murphy (in the middle of the corn hole game) wanted to play too. Mostly he just lounged :)

The food was amazing and very creative too! These were two parrots made from pineapples!

I just got home a little while ago and Kerry and the kids are having a sleepover again tonight. I love waking up in the morning with the kids, having breakfast, making coffee and playing the morning away :) 

Tomorrow I am going to head into Boston to visit so I will have more updates if there are any. 

Thanks so much to everyone who continues to support us and keeps Dad in their thoughts and prayers. He still needs them so keep 'em comin'

Until tomorrow,

Laurie

Late Summer Staycation

Familiar View

 Here's the view from Dad's room. It's room 701 and it's an isolation room which he doesn't need but it was the only one available. Basically it mean a HUGE room with a separate room for the nursing stuff.

Today was a crazy busy day for Dad. He had another whole round of tests and procedures. So they have figured out that the infection is in his heart valves as well as the rest of the body. Originally they were thinking of removing his defib/pacemaker so that it could be eliminated from infection but as of today they are not thinking of doing that now.

He will be on antibiotics until transplant now. He will not be rid of the infection per say in the LVAD pump or the pacemaker/defib because they are foreign bodies and will remain coated in the "bug". By constant administration of suppressing antibiotics it will keep the infection away from the rest of his body and at the time of transplant the foreign stuff will be removed.

After this "bug" is gone he will move up on the list. Everyone always asks what number he is. He is not any number, there are no numbers. Every two weeks the transplant team meets to discuss the critical cases. They decide from day to day minute to minute who will get the organ when one becomes available. So there really is no number, you can only move up and down. He will be at status 1A/B because of the infection. So if there is any sign of infection present when the organ becomes available he will not be able to receive the heart.

Mom has been staying with Dad at the hospital and today the "aunt squad" came to rescue her and take her out for dinner. Thanks Aunties :)

I have to say I have the best group of Aunties a girl could ever want! We couldn't ask for a more supportive family than the one we have! Auntie Mary came to visit after her appointment at Dana Farber which went very well and she is doing AWESOME! I was glad she was there when the team came in to go over a few things. She is a nurse and has a ton of knowledge about all of the drugs and procedures for infection. She was able to explain things and tell us why they were thinking what they were. She also helped us get a nurse to come in when it was change of shift and his IV alarm went off for 37 minutes and he needed more of the drug! We hate shift change!

They are covering all bases. This is a brilliant doctor who is an M.D. and a PhD. She is an opthomologist for one and has a whole bunch of letters after her name stating her credentials! She found a few things in his eyes that are not uncommon with infection and he knows he has macular degeneration and a slight cataract in one eye. There was no signs of raging infection on the optic nerve which was a very good sign.

His white cell count was at 14 ( pretty bad ) on Tuesday. Normal levels are between 6-10. As of today he was at an 11 so he is heading in the right direction. He is responding very well to the antibiotics because he has not been on antibiotics in almost 30 years other than in January and last week! SO there's a giant advantage that I myself would not have. His kidney's are still not recovered. They are not getting worse which is a good sign that they stopped the progression of renal failure. So they are just waiting for that to turn around and then they may add in another antibiotic if they have to.

The good thing about the Brigham is that they always have stuff to look at. They are running a nursing series right now in one of the lobbies. There are a bunch of antique nursing uniforms and a history of each uniform. Did you know that nurses did not start wearing all white until after WWII?

Lastly I need to give a shout out to my Goddaughter Adele. Today was her very last day of preschool! She loved, loved, loved "Little Beginnings Preschool" she will miss all of her friends from school. I can't believe she is already going to kindergarden! Where does the time go?

That's all for today. Thanks to everyone for all the calls, texts, visits, cards, meals, rides etc. We are very lucky to have such wonderful family and friends.

Until tomorrow,

Laurie

Wish We Had Another Day In Paradise

Where I spent the last few days before I came home to the bad news :(

Sanibel Harbor Hotel, Sanibel Harbor, FL

The daytime view from our room

 The night time spectacular sunset

The Harbor

I went to Florida to help my cousin Tina move home to Massachusetts. My Auntie Madeline and My Auntie Mary flew down on Friday and I flew down Sunday afternoon. I thought we were staying in Ft. Myers at a hotel close to wear Tina's apartment was. When I arrived Auntie Mary picked me up at the airport and said she had a surprise for me. Now when I called to ask if I should bring a beach towel, Auntie Madeline said I wouldn't need one that they had a surprise for me. So I thought the surprise was a beach towel. You should have seen me when I found out the surprise was that we were staying at a resort on Sanibel Island!

It was a great few days away with a lot of laughs and fun

                             

Auntie Madeline, Tina and I at The island cow breakfast place and Auntie Mary and I under the rainbow at the Mucky Duck where we went for dinner and the beautiful sunset one night.

We ate some great food, saw some beautiful sunsets and went to the lighthouse beach to collect some shells

This was my sand dollar. He was still living so I took his picture amongst the shells and put him back in the water. There were a MILLION shells! I brought home a huge bag full.

THEN I GOT THE PHONE CALL

Mom called me on Tuesday with the bad news. We were flying out late Wednesday afternoon so at least I had a few days of RandR.

Today was more tests...after that...more tests...followed by and x-ray, followed by a cat scan, followed by a dental x-ray etc. etc. etc. 

From what they figure Dad has not only a blood infection but an infected root under one of his teeth. They are going to pull it on Monday.

The whole things just seems so strange to me. He has no signs or symptoms only that he is tired. They said his defibrillator/pacemaker has to come out to rule out infection from there. If they need to they can put it back in. If not they are leaving it out???

He has been on continuous IV antibiotics and they also think that when this LONG visit is over he will go home on antibiotics.

Because of the infection he has been removed from the transplant list. When he goes back on he will be bumped up to 1A/B which means he goes back up to the top but will have to be monitored constantly to make sure he has no infection. 

Tomorrow will be more tests and scans and then the dreaded weekend is upon us. The weekends are TERRIBLE! The staff is short and the wait time for everything is eternal, not to mention that most departments run on a skeleton crew. I hope they can get everything he needs done tomorrow.

Brendan, Kerry and the gang are staying at our house while work on their house continues. It was great having the kids there today to keep my mind off things.

Lilly found an old bear of mine that Mom gave to her and Kylie. One had a pink shirt and one a purple shirt. They have magnet noses so they can kiss. Lilly figured out that the bears nose stuck to the fridge...Then she tried to stick her nose to it too!

Kylie and Lilly played with the old McDonald's happy meal toys which we have had forever and they love them. Julie did a little light reading and worked out with her little gym.

Lilly had a head to head instead of a heart to heart with Julie.

They all were so good today and a lot of fun to have around

Kylie and Lilly are keeping Papa's chair warm for him while he is in the hospital getting better. 

Julie likes the couch so Auntie and her will be waiting on the couch instead :)

That's all the news I have for today folks. The good news is at least Dad is not in any pain and is relatively comfortable even with an infection. 

I am going up to the hospital tomorrow after work and hope to have some better news to report tomorrow.

Thanks to everyone for all of your offerings, calls, cards, txts and e-mails. We really appreciate everything!

Until tomorrow,

Laurie