anyone left?

Well hello avid readers!  Is there anyone left out there in cyberspace to chat with me? I would certainly not be surprised if you have have erased the web address and have decided to continue on with your day to day lives.  Well, here I am, to update you on a few odds and ends that might be of interest.

 Matt is back home in Cleveland, safe and sound.  We are both finally sleeping again now that our family is together.  Matt feels great, just a little pain when he sneezes or coughs, but that is to be expected with the stress on his stomach muscles.  He plans to go see his primary care physician tomorrow to set up the follow up appointment so that he can get back to work.  His scars are healing up nicely and Abi checks on them every day.  She is quite the little nurse and enjoys taking care of daddy.

Andrew.  Well his story is always better.  Comes with the territory.  Andrew is doing well.  He still sees the doctor twice a week but is now staple free!  His energy level is increasing every day and he was recently surprised by two new visitors.  On the day that Matt left, Grandpa Dever and Aunt Di showed up in Andrews’ living room.  Big surprise.  Well, big surprise to Andrew and Rachelle.  The rest of world knew they were heading to PA. 

The family spent Labor Day weekend as guests of the Zieglers at their Poconos mountian house.  Matt and I were sad to have missed a trip, but in talking with Eileen this afternoon, she said it was wonderful and they all had a great time. 

The upshot today is that Frank and Stein are doing very very well.  This has been our own little miracle.  Continued proof that this family really loves each other and that even through fear and anxiety (equal on everyones part), they can laugh and joke and stay strong for each other.  It was a blessing to watch and an honor ot be a part of. 

I am proud of my husband for doing something that he was terrified of doing because he loves his brother.  I am proud of Andrew for staying strong for 10 very long, painful and scary months and for facing his new life head on and taking advantage of the gift that he has been given.  Their lives are forever woven together in a way that none of us will ever understand.  And I am a better person for having been a part of it. 

Thank you to all of you, who read the blog, commented, made us laugh and supported us with comments and phone calls.  Andrew and I have not decided what is to become of this blog.  It would be really cool to see it keep going and we have toyed with the idea of making it a blog for living donors.  Andrew gave a moments thought to maintaining it himself.  We are both challenged with the time and effort that it takes to maintain this the way it ought to be maintained, but check back.  It might just survive!

enter at your own risk

Here are the promised pictures.  I, officially, have no photo editing/publishing skills!  Use the back button to get back to the blog so that you can see the next picture.  If you close the window, you will lose the blog.

This is Andrew at his dialysis, the day before the surgery.  Andrew at Dialysys

Here we are making our way to surgical admitting at 5am on Wednesday. We all wore our Andrew’s angels shirt’s. On our way

Why on earth would Chris take a picture of a banner at Lehigh? Well, clearly he wanted us all to see the faces of the men who cut his brothers open.  Duh.  The Doctor second from the left is Dr. Moritz.  He worked on Matt.  The Doctor third from the right is Dr. Chakarbarti.  He is the surgeon who worked on Andrew and is continuing his follow-up care.  Banner of Transplant Excellence at Lehigh Valley Hospital

This is a picture of Andrew’s left arm, the one with the fistula.  Becuase of the fistula, this arm can’t be cut into or ever used to draw blood.  The red bracelet was to remind everyone in the room not to mess with it.  Andrew will have to wear a bracelet that indicates that he is a transplant patient and that he has this fistula.  Andrew’s DO NOT USE arm

Here is Matt’s stomach right after the surgery.  Pretty huh? Matt’s Belly

Here is the 7 1/2 inch, stapled incision on Andrew’s stomach.  Just as pretty!  Andrew’s half smile

This one is only for those with a stomach of steel.  This is a picture of the neck IV’s that Andrew received during surgery.  These tubes were administering the anti rejection meds for the first few days.  Everytime I see this, I shudder.  Andrew’s neck

And last but not least.  Pee.  The money shot

Thanks to Chris, our amazing photographer, for finding this process worthy of photo documentation.  The rest of us completely forgot our cameras!  You saved the day.

To forgive, divine

I am sure that I am just moments from being fired from my blog job, but I ask your forgiveness as I have decided that this adventure would not be complete without me getting sick too.

My mom  reminds me that when I was little, I would go to great lengths to be the center of attention.  Apparently, I have not matured much in 37 years and I felt compelled to get some horrendous mix of food poisoning/stomach virus/alien intestinal takeover that has knocked me on my butt since Monday.  Monday. Monday early in the day.  God forbid I let Matt and Andrew get all the nursemaiding. No No No.  That won’t do.  Someone has to pay attention to me too!  Oy!

We were fairly convinced that it was food poisoning but at some point Wednesday afternoon, Matt decided that food poisoning would be gone and that clearly, I had something else going on.  I have decided on the alien intestinal invasion.  It is the only logical explanation.

So the guys are good.  Yesterday, we spent the entire day in Quakerstown with Andrew and Rachelle.  We hung out for a bit, Rachelle’s grandparents came by for a visit, we made a run to Target (again) and then a run to Michael’s.  Note to those entertaining the idea of caring for recuperating patients for long periods of time-BRING YOUR KNITTING.  We were desperate for something to do with our hands (not one single comment from you Christopher Michael Lynette!) so we went to Michael’s to find something crafty to do.  We found a few things and then headed back to Andrew and Rachelles’ for dinner.  We had a considerable debate on the merits of seasoning the ground beef for tacos versus leaving it plain and then finally, decided to leave it plain lest we all starve while the debate raged on. 

After dinner, we played a short game of SCENE IT which I absolutely loved.  That is my kinda game.  Eileen and I were tied for the win when she got a phone call, disappeared outside and well, basically we skipped over her and I won.  I am not proud, but family board games are not for the weak!

Matt is recovering very well.  He is tiring of sleeping in a recliner and will tonight, for the first time, try a bed.  Sleeping in the prone position scares him a bit, as he still has some coughing spells that cause him great amounts of pain.  When he is in the recliner, he can sit himself up quickly, grab his abdominal pillow and apply pressure to ease the pain.  We fear that wont be as easy when he is lying down.  We’ll see how tonight goes.

He continues to take the Percocet at night.  Sometimes it helps, sometimes not so much.

Andrew continues to do very well.  Despite our high hopes for that recliner, he is still not sleeping well.  I believe I mentioned in a previous post that he has some nerve damage in his left leg.  This nerve damage causes the sensation of a strong vibration that keeps him wide awake.  No matter what position he moves to in the recliner, he feels constant movement in that left leg.  It is driving him nuts.  Not sleeping is not helpful in healing.  The doctors have assured him that one of two things will happen.  The nerve damage will repair itself or he will get used to it and not notice it after a time.  We can only continue praying for the option A.

Eileen met Andrew at the doctor this morning.  Andrew is able to get his blood drawn in Quakerstown and then have the results available for Dr. C. when he goes for his visits.  Saves that two hour processing time that we thought we would be up against twice a week.  His creatin level is still great (yeah kidney), but his magnesium level is down.  He is also not drinking enough.  He needs to take in 64 oz of fluid a day and he is having a hard time.  All this time, while he was on dialysis, his liquid intake was severly limited.  Becuase of that, the bladder sort of shrinks and the brain thinks, ‘ok, less liquid, less bladder function’.  So now, when the expectation is to drink lots, the bladder and the brain are saying, ‘excuse me one moment while I freak out’.  This is a time of retraining some organs to get used to a more normal routine.  His weight is 154 as of yesterday.  So one week after surgery, he lost all 20 pounds.  Every woman reading this post is jealous, but remember ladies, he was pumped full of fluid and was able to pee it all out!

Andrew was planning on coming back to Jenn’s house to hang out with us for a bit, but my stomach ailment concerns him.  It is probably smart.  Yesterday I was still convinced it was food poisoning but I kept my distance. Today, not so much.  He can’t take any chances so I will have to blow him a kiss from afar tomorrow when I leave.

So I sign off here and will go back to the picture post.  The first night I tried to do it, I felt AWFUL and I worked on it for an hour with no success.  I wish I had the smallest amount of my sisters talent in photo editing, cause I am sure that she would have had that post out in a flash.

picture post

Well, I have spent the last hour trying to post pictures and I think I need to work on it some more.  Tomorrow morning, I will update all the photos.

We did not have the internet all day, so we were stuck like chuck.

Good night Irene!

Goldilocks & the Three Chairs

So one of the things that Andrew asked Dr. Moritz about today was sleeping pills.  He could not sleep at all last night and he was at the end of his rapidly fraying rope.  Dr. Moritz decided not to prescribe him anything because of his age.  He said that Andrew was too young to be taking anything and that he should really try to sleep without it.

For the past two nights, Matt has been sleeping in the recliner that we have in our room.  His rest last night was less than peaceful, but that was due more to the fact that he did not take a percocet, than anything else.  Dr. Moritz told him today that he should take the percocet and that he wont get addicted to it and if it helps him get some comfortable sleep than that is what he should do.  Thank you Dr. Moritz.  Now, why can Matt have something and Andrew can not? Who knows.  Andrew is more vulnerable and has a lot of stuff running through his system right now, so I can only guess that there is a concern about layering something else atop all the necessary medications.

While Andrew was here at Jenn’s House this afternoon, he took two naps.  The first one he took was in the recliner in our room.  He slept about 45 minutes and was feeling good when he woke up.  A few hours later, Matt went up for a nap in our room, so we set up Andrew in another bedroom, in a more cushy recliner.  He slept for an hour and a half.  He felt even better!  Are we all on the same page here? Andrew needs a recliner!

The local furniture store, Ashley’s, has a store very close to A&R’s.  We started looking around on the internet and pricing various chairs that looked comfortable.  Rachelle called the store and asked about prices and delivery and while they had plenty of chairs, they would not be able to deliver tonight.  Andrew and Rachelle decided to check it out anyway.

About an hour ago, A & R bought a chair!  One that was just right.  They explained  that Andrew had just had surgery and that they were looking for something to get home tonight.  The salesman, Matt (irony, love it), talked to his manager and they gave A&R a really good deal on the chair.  They still would not be able to arrange delivery on such short notice, but they would wrap it up well and do whatever they could to help them get it out of the store.  Rachelle made a few phone calls and viola! arrangements were made.  Jonathan and Jason, Rachelle’s brothers to the rescue.  They met them at the store and got that chair home.  There is a theme here.  Brothers rock**.

I have a philosphy.  Ready, cause I just love this philosophy.  I think that most people are just waiting to be able to do something good.  I think a lot of the worlds focus is on the bad stuff and we find it too easy to forget about the good stuff.  I think, that anytime you hand someone the opportunity to do something helpful and good, they’ll take it.  People are inherently good when given the chance.  It is so amazing.  And, the best part is,  not only does it benefit the recipient but it benefits the donor.  That’s it.  I just had to put it out there.  The sales guy wanted to do something good (great price), the brothers did something good (speedy delivery) and everyone gets something good in return. 

So Goldilocks found his perfect chair and good feelings abound.  Who needs Dr. Moritz’s sleeping pills?!?

**Alright sisters.  We rock too.  There are a lot of sisters reading this blog and you know I love my sisters!!**

Daniel

Rachelle and Andrew met a young man this morning named Daniel and we have decided, in the hopes that he reads this, to dedicate an entire post to him.  The hope is that he can see how much support and love that Matt and Andrew have received and realize that this situation does suck, but support is out there!

Daniel is 20 and was diagnosed with a form of kidney failure when he was born.  The doctors knew that dialysis was in his future and that it was only a matter of time.  The prognosis was that Daniel would probably need dialysis beginning at the age of 12.  His kidneys hung strong until this year, and now, at 20, he is beginning the dialysis process.  Daniel’s dialysis center is in Pottstown, PA at a small hospital.  Like Andrew, he is getting hemodialysis.  This type of dialysis is administered in the hospital via a machine.  Daniel is currently getting treatment a few times a week for 2 1/2 hours at a time.  He just had a fistula (Andrew has one too) placed in his arm and there is a period of time that it needs to develop to be strong enough to be used as an access. 

He has A+ blood, just like Andrew.  He is going through the pre-screening process to be listed on the transplant list.  I think we all know how lucky Andrew was to have Matt ready to donate, but most people on the list wait for a very long time.  3 years is the average. 

Daniel has a very supportive family.  He has a close relationship with his brother and his mom.  He is outgoing, positive and friendly.  He had many many questions for Andrew, and of course, Andrew was willing to answer every single one of them.  He was given Andrew’s email address and the address to the blog so that he could keep in contact.

Daniel,

We hope that you will read this and know that you can contact us at anytime.  We wish you the best of luck and we really want to know what is going on with you.  Please comment, email, or whatever you want to do.  Good luck!

Frank and Stein

Thanks to Uncle Dan Hoynes, the guys officially have their new names.  Frank and Stein.  We sent him a phone picture of Matt and Andrew’s stomachs and he replied with ‘Good morning to u frank and stein’.  It was PERFECT.  100% credit to Danny.  We figure that Matt is Frank and Andrew is Stein.  So this years Christmas gift theme has been established.  Have fun!!!

Ok, so Andrew had a doctors appointment today so we have lots of fun stuff to report.  Andrew and Rachelle were back at good ole’ Lehigh Valley Hospital Diagnostic Center at 8am.  Andrew had 5 vials of blood drawn and then he was summarily dismissed.  They put a STAT on his blood work, but they still had a few hours to kill, so they came over to Jenn’s house to hang out.  We took a few pictures of the guys’ stomachs and sent them to Uncle Danny, Momma Robin (what’s up?!), and Mr. Z.  Danny came up with the name, Robin thought they were sexy and Mr. Z. offered to show his stomach to anyone interested. 

Ok, so for anyone keping score, we have lots of information on Andrew’s blood work.  Get your pencils, there will be a quiz.

His white blood count is high today, but that is because they gave him that shot yesterday. Not to worry.  His phosphoraus was low, but that is easily corrected with ample amounts of Coke, ice cream, cheese and potatoes.  Poor thing gets to eat all the stuff the rest of us are trying to avoid.  Did I mention he was a lucky bastard?!  His H&H is low.  Anyone? Anyone? Ok, I will explain.  H&H is Hemocrit and Hemoglobin..basically his red blood count.  In about a month, the new kidney (still nameless) will regulate the counts and all will be well.  No reason for concern on that one either.  His creatine level is 1.2.  What does this number mean you might well ask.  It means, drumroll please, that Andrew has a perfectly functioning kidney.   Go back and read it again!  PERFECTLY FUNCTIONING KIDNEY!!! 

The staples will come out in 10 days so Andrew will lose the zipper effect on his stomach.  Currently, he has 25 staples running along the left side of his abdomen and the scar measures 7 1/2 inches long.   It is, as Robin put it, really sexy.  Apparently, Robin and I are not the only ones who think Andrew has a sexy midsection.  The nurses, who so lovingly shaved all of his hair off, also told him that his stomach was sexy. 

Andrew does have some nerve damage in his left leg.  He feels like his leg is vibrating so today’s adventure out of the house is to the local Target to buy Andrew a wedged pillow to go between his legs.  This damage is apparently common with kidney transplant recipients.  It either becomes something that he will get used to, or it will just repair itself.

Andrew also ran into his anesthesiologist in the cafeteria, who, no kidding, did not recosnize him until he started singing ‘Spider Pig’.  She apparently kept looking at him and finally he started singing and she knew exactly who he was!  The song is now legendary!

So that is all for now.  The guys are both taking power naps and us nursemaids are sitting around waiting for them to wake so we can do their bidding!

Oh…by the way.  Matt pooped.

A cherry on the top of our Sunday

Andrew is HOME!  Rachelle sprung him this afternoon after blood draws, doctors visits and promises to take it easy.

This morning, Andrew had a low white blood cell count but the doctors gave him a shot and said that he would still be able to go home.  He has to haul all the kidneys back to the doctor tomorrow at 8am for yet another blood draw and to be checked out by Dr. C. and a slew of others I am sure. 

As for the rest of us Lynette’s, we were officially lumps on a log.  Matt took a percocet last night and blissfully slept from 10pm until 5am.  He got up to go to the bathroom (No cartwheels yet kids, still no bowel movement.  You signed up for the blog, you get the dirty details!) and was still able to come back into the room and get a few more hours of sleep.  We all got up at about 7:30am and have been sitting in the common room flipping through channels for about 12 hours now.  We learned a great deal about Dubai and the Correctional System of California.  I think we watched some guy cook and eat tarantulas so that was really exciting. 

Lest anyone think we weren’t interested in seeing Andrew leave the hospital, we all discussed it at length and decided that he really needed to take it easy and just get the hell out of there.  Much of Rachelle’s family has been very eager to see Andrew and has been respecting the hospital rules and our visitation so they were planning on meeting Andrew and Rachelle back at their house.  We decided to let them have their time.  Matt did not really enjoy the short drive home yesterday so we also thought it might be too soon to put him back in the car. 

Andrew’s drive home was not so bad.  The guys have their scars in very different places.  Matt has a 3 inch incision vertically through his belly button with two smaller holes on his left side.  Andrew has a smiley face scar on his left side but much  lower on his abdomen.  Find Chris, he has pictures!  We didn’t have a way to get them on the blog, but we might be able to fix that when i get home.  I will work on it, but will be sure to make them links for anyone who is faint of heart.  They are a bit gnarly!

So Matt is home and Andrew is home.  This is still a surreal experience and far from over.  The guys will be seeing doctors next week and the week after.  They will also be together quite a bit next week so the blog ought to be chock full of Mandrewisms for all to enjoy. 

Ok–another HUGE FORGOTTEN HELLO to Mrs. Z. and Ms. Robin. (who I wanna call Momma Robin but I don’t know if she’ll like it-she’s is expecting a baby girl right around Christmas. Yeah!) Almost the entire Ziegler clan was at the hospital on Wednesday for support.  Brad was not able to make it but called a few times to check on Andrew.  The Zielgers brought a great lunch and were excellent company.  They all love Andrew so much and having them there was comforting not only for Rachelle, but for me and Eileen.  Andrew is loved equally in PA and OH.  Lucky bastard.

So, here we are having a quiet night doing Sudoko and watching a Food Channel cake competition.  We should have another bionic kidney update tomorrow late morning and then sadly, you will have to put up with more boring details of how we spend our day.  Cowboy up! 

Table Manners

God is good, God is great, Jesus thank you for this food…

 Matt farted at the kitchen table during dinner.

Amen.

Afternoon Delight

Matt is HOME.  He was released earlier this afternoon, just after lunch. 

Eileen and I got to the hospital about 10:45am and Matt & Andrew were both in Andrew’s room sitting up and talking to one of Andrew’s doctors.  One of many.  This particular doctor was explaining, in some detail, that all of Andrew’s ’levels’ were looking very good and once again, Matt’s kidney stood up and took a bow.  I will get the name of the something….but there is something that the kidney naturally produces that Andrew will have to get shots for until the new kidney kicks in and does it.  This is 100% normal and apparently, the new kidney is already starting to produce this something, just not in the amounts that it needs to be to operate at full function.  Even still, the doctor does not expect that Andrew will have to get these shots for very long, which is very good news.  The doctor also explained that Andrew would have to be seen twice a week for a few weeks, then once a week for a few weeks, then once every two weeks, then once a month until he hits 6 months.  At 6 months, he will need to be seen every six months for 2 1/2 years and then once a year forever.  The doctor also said that typicaly, anything that will go wrong typically goes wrong in the first 6 months.  So we have another milestone to conquer.

When the doctor left, Matt told us that he had been discharged and was just waiting for Dr. C (it’s just easier that way) to stop in and write the perscriptions and go over any last instructions before they sent him home.  Dr. C showed up about ten minutes later and said that Andrew could be released TODAY.  Today.  Released to go home from the major surgery that he had on Wednesday!  Andrew passed.  He said that he would feel better staying for one more day and we all agreed, but we were all pretty pleased with the news that he could go home if he wanted to.  Andrew still had the IV in his neck (yeah..it hurt just to read that didn’t it?????) that was used to administer his anti-rejection drugs and Dr. C. said that could come out right away.  Andrew’s catheter came out early this morning. Matt watched, held his hand and acted as his breathing coach. 

Dr. C said he would come by in the morning to release Andrew so we will have more good news tomorrow early on.

 When the nurse came by to remove Andrew’s neck jewelry, we all had to leave since he had to be in a prone position with no talking, moving or laughing for at least a half an hour.  Eileen and Chelle went to eat lunch while Matt and I went back to his room to see if they brought him lunch and wait for his ’scrips and discharge instructions.  He got lunch, I ran to the pharmacy and we waited.  Finally, Nurse Ratchett (her name for herself, not mine) came in and went over everything.  No lifting, no driving, take your percocet, eat soft foods for a few days and live your life.  CAN DO!

Andrew was pretty tired after all of the commotion of the neck IV and since Matt was ready to see the sun, we decided to leave. 

So here we are, back at Jenn’s house.  Matt is able to negotiate the stairs so we are down in the TV room.  He took a short nap in a reclining chair and was sound asleep until he had a coughing fit which woke him up in extreme pain.  The coughing can easily bring him to tears and the gas bubbles are still unbearable.  But other than that, he is really just fine.  It is amazing.   I am very thankful.

Rachelle is going to visit Andrew a little later tonight before she heads home.  Andrew really wants a good night rest before all the hustle and bustle of tomorow so we will likely hang out here with Matt and kee an eye on him.

We need to name to kidney.  Seriously.  We have all been joking for days about what to call it.  So far, we have 4Real (click name to get the story behond that one), Plus One and Harley.  Post your suggestions in the comments (Chris, you are limited to 5 a day) and we will pick our top three and let everyone vote.  A little interactive love!

And finally…..a BIG UPS TO MR. ZIEGLER “DAWG”. He came by to visit yesterday and I just left him right out of the blog post!!!!! My bad Mr. Z. !!  I was tired and all the hospital fumes got to me.  You are awesome and your smile just lights up (no pun intended) the entire hospital.  Andrew was thrilled to see you and Matt was sorry that he missed you but understood that you had to get back to work.  We all can’t wait to see you again and Matt is looking forward to a trip to the mountains!