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Home sweet home

Well folks…. we are back in the ‘ville and ready for a long rest. We both are officially exhausted and excited for a good nights sleep. We of course will continue to post, but for now it is time for a siesta.

Love and God Bless!

-Heather and Shannon

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Day 8

Day 6 and 7 might have trumped the December 2016 stay in the hospital over Christmas when it comes to the stress and worry.  Watching his pain and struggle broke my heart and I hope he is never in this much pain every again.  I really do not think I will sleep well until he is finally back at 100%.  Not sure really what is different besides him being healthier going into this surgery verses in December when he was being over-medicated and reacted to the large dosage of meds.  Not really sure why, but all I can say is that we will be very grateful to have this mountain behind us and to move forward.

Over the last 8 days Shannon has lost 18 pounds!!  I think it is time for some nourishment before he loses anymore!

All through the night Shannon struggled with the NG tube and just wanted it to be removed.  Waiting for the doctors to come in this morning was a long wait since he was up most of the night again.  He HAS to be exhausted!  I know I am and I did not have surgery!  We had an outstanding nurse all day yesterday and last night.  They have been top notch and make up for the lack of care the previous evening when the nurse left me in the bathroom holding a crying and puking husband.  That nurse should never step into our room again.  The nurse Sarah and Desi deserve merit awards and are wonderful patient advocates!  They are exactly what you need when you are sick in the hospital.

All night Sarah calmed and soothed Shannon the best she could.  She also worked with Desi during the day as they did shift recaps to talk to the surgical team about removing the NG tube so Shannon could be more comfortable.  They quickly removed it this morning and then asked us if we were ready to go home.  I looked at the doctor like he was nuts!  Yes, I want to be home.  We both want to be home!  There is no way I am willing to take him home without one solid good day and him having at least had a liquid meal that he can keep down. (Uncle Tony suggested Busch Light.  I know he is reading this and laughing.)

The doctor agreed that we could wait and see later this afternoon how he is feeling and what we want to decide about sending us home.  Shannon is determined that it is time for him to go home.  I told him I was okay with it as long as he eats something.  He still has only had a few bites of food here or there for the past 8 days so we will see.  At this point all he wants to do is sleep and food can wait.

Hopefully we will make it home in the next 48 hours or so.  I am hoping and praying for an uneventful evening.  For now, Shannon is finally resting peacefully.  He actually smiled again!  I have been waiting for so long so see him smile!  I will keep everyone updated on how things go tomorrow morning.  In the meantime it is back to work.  I am blessed I can work some here while he is resting so I can spend more time with him at home recovering.2018-01-17 09.58.25

 

Numbers

So admist all of the negative and stress…. I need to Channel my mom for a minute and look at the positive side of life. Each day Shannon’s blood draw is done first thing in the morning about 4 AM. And each day the numbers have consistently improved. All except for the white blood cell count but we expect that to always be low for the rest of his life because of his immunosuppressant drugs.

Sometimes in the middle of him growling at me or crying in pain I forget to remember the positive side. That once we are past all of this stress he should be feeling better than ever.

I didn’t write a day 7. Not sure what to say that I haven’t already. Just waiting for the doctors this morning so I can unleash the angry patient on them. Pretty sure they should be terrified of him….after 7 nights in a small room together I think I might be! 😜

More positive news? Greta Sauder stopped by after class yesterday for a short visit!

Well the doctors have started rounds and the nurse has went to warn them about my wonderful husband. They are in for it today! 😉

-Heather

Day 6

Do I start off with the positive of the day or the negative?   I think I will start off with the positive this round.

Shannon started off Day 6 with the amazing doctor visit and started off very strong.  My sister Megan and the kiddos were in Columbus for a doctors appointment so they decided to stop by the hospital.  Shannon instantly perked up with the excitement of seeing the kiddos and Megan.  Kids under 12 are not supposed to be on the transplant floor so we made arrangements to meet them in the atrium at OSU.  He walked to the elevators and by the time we made it to the 5th floor he was exhausted and having severe stomach pains again.

He hung in there though.  I left him in the atrium and went to meet Megan and the kids.  By the time we got back to the atrium he was ready to head back to bed and rest.  I took him back to the room in a wheelchair and then came back down to get the kiddos to smuggle them onto the floor and into the room so they could visit for a few more minutes.  Madigan was a hoot like always and Lincoln just observed.   After their visit with Uncle Shannon on the way out Lincoln kept talking about the pinwheels he put in the ground in April (Check out the photos here.)

About the time the kids showed up is when the wheels fell off.  Shannon began getting sicker and sicker throughout the day.  He hung in there for their brief visit, but immediately fell asleep while I was walking them to the car.

As the day progressed he became more agitated and the pain level increased.  By evening  Shannon was screaming out in pain in between vomiting again.  (No description needed for all of these symptoms – ask me in person).  The on-call doctor ordered an NG tube to be placed.  It was the same doctor as Sunday evening and he had said if there was no improvement this would be the next step.  The tube was inserted through his nose and into the stomach to pump out everything.  The goal is to alleviate the blockage and try to help the bowels begin working again.  Shannon has been restless all night as they flush it, did another X-ray, try to get his medicine down, etc.  It has been a long night for sure for him.  He is looking forward to talking to the doctors in the morning about what his next steps are and options.  I am pretty sure he is fired up and ready to do anything for relief.

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Truly the day has been full of highs and lows of epic proportion.  From the visit with the family to the end of the day tears and pain.  God and my sister KNEW we needed the smiling faces of the Fraunfelter crew today.  God had a plan to help us get through this day and look back with smiles at the end of an exhausting, trying day.

Love,

Heather

 

A Sight for Sore Eyes

I think last night might have been Shannon’s best night of sleep yet!  With the relief of last night and then looking forward to seeing some of his favorite doctors back today, I am pretty sure we both are feeling confident again with his path to recovery!

The doctors pictured above have been keeping track of his progress while they were at a conference in Florida.  They feel like we are now headed uphill with Shannon’s progress after surgery and things are beginning to look back on track.  They decided to keep him one more day to see how he does and determine any next steps tomorrow morning.  Today will be full of a lot of rest and slowly begin drinking or eating again as Shannon feels comfortable.  Shannon is beginning to refuse the pain medication in hopes it will help speed up the process of him feeling better.  He says he would rather have the excruciating surgery pain than the other pain he experienced the last 48 hours.  He is starting to walk without a walker again and working to stand on his own.  We will see how the second half of today goes and what next hurdles we have.

Shannon has scared me quite a few times with his illness.  The most terrifying moment was last December when he has his reaction to his medication and almost lost the new kidney.  The second most terrifying moment was yesterday.    Many people might not agree.  Many people might think it was the though of dialysis and other moments throughout this process.  Nope.  I am pretty sure yesterday takes the cake.  I did not share half of the things that happened and not even our parents know all of the details.  Shannon even says he does not remember all of it.  I am so thankful to have a new day and a new start to try again.  Knowing that his doctors would be back oncall today reassured me last night that it would all be okay and hopefully the worst is over.

I have to tell the world this.  I love these doctors pictured above.  I love them so much and Shannon does as well.  These 2 doctors are my voice of reason in a chaotic storm.  They are truly angels.  They are the reason why after transplant Shannon is still alive today!  They know who he is and listen to every symptom we share with them!  The walked into the room this morning and everything suddenly was okay again.  Something told me last night that everything would be okay and seeing their smiling faces walk in the door today just confirms everything.  They are truly a gift from God and put in our life at the right time.

Love and God Bless!

Heather

Relief!

Disclaimer: Disgusting post for today!  Read with a strong stomach!


Well after the previous ranting post I must admit I am excited to post an update before falling asleep.  After finally putting our foot down and demanding some additional x-rays and for the on-call doc, Shannon finally found some relief this evening from his pain.  He is still in pain and uncomfortable, but much better than the last 24 hours..

Shannon felt weaker and weaker all day.  By the time the shift change happened about 7 or 8 this evening I was beyond furious that a doctor had not come in or that the nurse had not been helping him in anyways.  We went ahead and sent his doctor a MyChart message with a status update.  I knew he was being updated and checking his progress while he was in Florida this weekend, but I needed the mental reassurance that he would see our words and how badly Shannon was feeling.  We have been counting down the days until his surgical team returns on Monday morning.

Our poor night nurse walked into the room and asked the simple question – “How are things going?”  I of course became the crazy wife of the day – probably the one that they sit in the nurses station and vent about.  I started off angry and then crying and then apologizing.  She quickly sprung into action and called for the doctor to come up to review Shannon’s case. The nurse immediately gave Shannon his pain pills and other evening meds.  She then went off to help another patient while he sat in the chair waiting for relief or the doctor or anything to change.  Shannon continued moaning and muttering his words so quietly nobody could hear him.  He was barely able to keep his eyes open.  He suddenly looked up at my and reenacted the vomiting scene from the Exorcist.  I am not kidding folks.  The green and black bile he let rip from his body was like watching a movie.  The only other person I have watched try to reenact that scene was when I was attending Wilmington College and it was her own fault (she shall remain nameless since she married one of my Zanesville friends – wink wink).

Just as quickly as the vomiting began – it stopped.  Shannon for the 1st time in 2 days looked up at me with clear eyes and started speaking louder and more clearly!  As time passed this evening he even got up and walked around again with minor assistance!  The stomach relief changed everything for him.  He then finally felt some movement inside his stomach and bowels.  Hopefully this means everything is waking up inside!

The x-ray tech then came and the doctor shortly followed.  The drastic change in how he was feeling made everyone feel better.  The doctor feels as though a GI tube should be a last resort decision.  We are okay with that.  It is nice to know it is an option though if Shannon gets to the level of discomfort and body shutting down like he had though.  We are so thankful for him to have some relief though!!  Did we thing anything was wrong besides his bowels being asleep from surgery?  Probably not.  BUT we needed to check!  We needed to make sure we were not missing anything in the blood work, physical exams, and tests.  The blood work has been coming back AMAZING.  His numbers are the best they have probably been in 10 plus years!  Finally we are getting some answers and some results – even if it was just because Shannon decided to reenact the Exorcist

Best part of the entire situation today?  Shannon SMILED!  I have been waiting since the day of surgery to see him truly smile.  I have missed it.  His eyes lit up and he had his old spark back.  I cannot wait until I can see his smile again every day!  Here is hoping tomorrow is better.  It has to be!  I can feel it!

Love and God Bless!

-Heather