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October
1
2020

We are still here

Well - it's been a minute since I updated you guys and for that I am sorry. But we are still here and still fighting. Here is a quick and dirty run down of things that have been going on since Covid took over.

  • Daniel's appointments are all telemedicine unless it's been for a procedure.
  • Daniel's seizures have continued - we got him a brain MRI and a 48hr at home EEG. They weren't able to catch a seizure during the 48hrs but they did see that on the right side of his brain there was proof of activity and so he will stay on the medication for this.
  • He can no longer bend at the waist, hips or knees so we are in the process of trying to deal with that. He is on a medication to help with the spasticity but because of him now being on seizure medication he can't go up to a higher dose to try and manage this.
  • We did a Baclofen pump trial- he got a lumbar puncture and the medication was inserted directly into his spinal fluid. However the trial showed little results so he is not a candidate for the pump.
  • I am homeschooling Emersyn because we can't risk her going to school in person and bringing anything home. I contemplated this and Daniel's neurosurgeon, wound doctor and palliative care all said it would be for the best. No matter what you believe about Covid and what has been going on with it they all agreed that if he were to get it the chances of him living would be slim to none.
  • Many of Daniel's medical items that we use monthly have been hard to find or the prices have shot up - I'm assuming due to the pandemic.
  • Unfortunately Daniel's long term pay has diminished by $1000.00 a month so we are nipping and tucking and making it work in our new budget. One way is that I will be starting an Etsy shop for some of my artwork. It not only gives me an outlet but hopefully can be a source of revenue.  

Daniel's mental status is about the same, he has less "alert" moments where he is 100% present. So we enjoy them when we can. Emersyn tells him stories and talks to him non stop. It's so funny to see the look on his face when she's going full strength.  She climbs in the bed with him when he's having a good day and they watch movies together.  She has adapted what she can do with him now as opposed to before but she often gets sad and cries about wanting him to be able to pick her up again or go to the beach with her.

On a personal note - I have been struggling with a lot of things and have gone into 'shutdown' mode. I do the things around here that HAVE to be done, I take care of Daniel and Emersyn but other than that I don't want to do much else. I know it's a coping mechanism and I am working to snap out of it as I type.  This update is proof of that!  I am trying to write again and I hope this helps me and others who may need to hear something I have to say. After almost 2 years I have a piece up and if you care to you can check it out here The Mudroom - Living in Memories

We have several doctors appointments coming up to figure out what is the next best things to do for his pain and mobility so I will be updating you with that when I know more. 

Thank you all for your prayers, calls, cards, donations and love as we learn to live a new life. The life we have now.

All our love, 
Daniel and Amanda

Daniel's GoFundMe for medical costs    **please note that tributes on this caringbridge page goes
                                                            to the website and not to us**

Amazon List

Paypal email: tingle.taylor@gmail.com

March
30
2020

Sometimes less is just less

Hello all my fellow quarantiers -  

How are you doing with sheltering in place? Over here it's life as usual for the most part. I feel like I've been preparing the past year for this.  My introvert self is as happy as can be.  Our homeschool is more of homechaos but it's working for Emersyn so I'm not worried about it.  

Daniel's wound clinic at Emory is shut down so it's all on me till mid May (hopefully) when our next appointment is set for. We had been trying to get him in for a couple of neuro issues and it will be August before we can get there.  We have started him on some anti seizure medication for the time being to see if that could help. He's been on it a week and I'm still up in the air as to if I think it's helping or not. 

We got him a new wheelchair and thank the stars insurance approved it and we didn't have to fight them. It's a powerchair and our hope is that it can give him more independence and that it will be something he can be in more and more instead of just the bed. It's going to be difficult but we have to get him moving more. He isn't able to bend at the waist or the knees, so sitting is an issue. His muscle spasms are so bad that I can barely move his legs on my own.  I want more for him.  We will have physical therapy coming into the home a couple times a week to help - but their mission is to train me and work with him so that I can take over - they won't be coming more than a week or two. 

We also had to get him a new hospital bed - that insurance WILL NOT pay for.  They paid for the one he has but it's not a good long term fit. We had to get something that would move him more and help maintain his skin better so that we don't end up with more bed sores to deal with. I am super excited about the new bed as I think it could make a difference for his quality of life.  I worry about that a lot now; the quality. 

I did an adult thing too. I bought my first car all on my own! You read that right! I can't do anything normal tho so I bought it through text messages...basically! The van that we were so graciously gifted with was a Godsend but it wasn't going to be able to handle the new 400 pound wheelchair so I was able to trade it in and put a little money down and get a rear load van that I hope will be a game changer. I'm working on getting my vinyl machine going so I can make some wicked awesome window decals for it!

Daniel's wound looks so good and is very near to being healed over. NOW - when I say healed that doesn't mean done with. It just means that a thin layer of skin is forming over the wound; baby skin I call it. You have to be more careful than ever when you deal with it because just like a baby it's so dependant on everything around it. I am changing his wound everyday now - sometimes more than once with the help of my mom (the real MVP). We so still have home health but they don't have enough nurses and so they are going to be switching us to "tele-health" and will check in with us one a week from a distance. I'm flying solo it seems.

We try to laugh as much as we can and I try to keep Daniel in good spirits. His short term memory is lacking and that makes it hard on me. I have to repeat to him some things over and over and it makes it almost debilitating on me when I have to explain WHY I am having to hurt him, why he can't get up to go to the bathroom, why work isn't expecting him and so much more.  No matter what my heart is feeling I try my best to keep my voice and my face positive and upbeat. I DO NOT however always succeed at that tho, and it breaks my heart when he sees the pain in me but it's fleeting for him and he forgets he saw it and for that I am thankful. 

We are healthy here, we are safe and we have what we need. I hope that for each of you reading this. 

We love you all, 
Daniel and Amanda

March
5
2020

A New Year

Well guys Happy New Year!! I know I'm a bit late to the punch with that but what can I say - I stay a little busy!  I still can't believe that it's 2020. Anyone else with me on this?? A few changes around here but mostly a lot of the same going on.

A small recap
  • from the start of this journey till now we have spent 266 nights in the hospital.
  • His sacral wound has gone from roughly 8 inches wide and about 6 deep to 1x1 or less at this point. It looks amazing and I have the photos to prove it. We go back to the wound doctor in a couple weeks and I'm excited to hear what she thinks the next steps are for his healing.
  • He was on the wound vac for a little less than a year. (now we change his wound dressing daily)
  • His GJ feeding tube has had to be surgically changed 5 times - due to it bursting because of being clogged. We are currently looking into what to do about this to make his tube last longer. We go to a general surgeon in April about this.
  • We now have palliative care to help us through the land mines of our medical journey. They have been awesome and really very helpful. (not sure what it is? here is a quick and cute little video to show you)
  • With all the changes the original wheelchair Daniel got just isn't working for him. Being bed bound for a year now has changed what he can and can't tolerate so we are feverishly working to get him a NEW wheelchair that will accommodate him and give him some freedom. An electric wheelchair!!! woo y'all he was soooo cute when he got to try it out!!!
  • Daniel's pain has gotten more severe as well as his spasticity- we are working trying to figure out a good balance between his pain meds, nerve meds, and natural medications to help him with his. It is such a HARD thing to balance for him - we want him awake and able to work on moving and memory but not in pain.
  • The hardest part of all this is his mental stages. When he's good he's really good. He's 100% Daniel; he's funny and loving and 85% mentally aware of everything. The good has gotten better. Like with most things through this journey it's counter balanced with the bad. The bad has gotten worse. He often gets very agitated with me, combative. I have to tell him daily that he can't get up and he doesn't understand why I am being mean to him and won't let him get up and go to the bathroom. He has started getting confused with where he is, where we live and how everyone is connected. It's hard but we move past it.
  • Sundowning is a very real thing and I have seen the signs it is full effect for Daniel. About dusk he starts to get much more confused, he has a hard time separating reality from TV shows or dreams, gets combative and has heightened anxiety. This is very hard for me personally because he often questions why I'm "hurting" him (when I have to move or clean him). It's hard to get him to calm down or soothe him. I'm doing more research and working to try and limit this for him and us.

I am sure that there is more but that's enough to leave you all with for now!

We love you all 
Amanda & Daniel 

November
19
2019

One Year Ago 10-20-2019 (a lost post)

** this was posted on 10/20 but somehow the site ate it so it has been reposted**

On this day one year ago the Taylor house was full and happy. We had four beautiful foster children and Phoebe at college. Life was great. We were nine months into a new routine and recently home from an amazing weekend in the mountains with friends. We were able to share so many firsts with the children that weekend and Daniel and I really felt like we were exactly where we were meant to be. I dare to say that we were happier than we had ever been. 

On this day one year ago Daniel and I had an appointment to go winter shopping for our three boys. This was the first time that Daniel was going with me. Bright and early Daniel surprised me when he came into the bathroom and told me to pack an overnight back we wouldn't be coming home. Our friend was on her way over to stay at the house with the children. I knew something was coming because the day before he had sent me flowers to school! The day was a perfect day, the stress of leaving the children gave way and was replaced by laughter and hand holding. We went shopping and Daniel got to experience the chaos and the joy in picking out little outfits. He kept getting so excited when he would find me and hold out an outfit he had put together for one of the boys. Hours later we loaded the car down and went to have a lazy lunch. We ate and talked about the future and enjoyed it being just the two of us for a change. We proceeded to the surprise and he drove us to the Lake Lanier Lodge. He was so excited that he had been able to pull off the surprise for me. 

On this day one year ago everything in our lives changed forever. An hour after checking into our beautiful room with a view Daniel collapsed on me. At first I thought he was playing, then I was able to move him enough to see his face. His eyes were open but he was not in there, his eyes blankly looked past me into the distance.  That was the night his brain aneurysm burst and he then had a stroke. That was the night our world stopped existing as we knew it. 

One year ago today they were telling me his life was hanging minute to minute and if he made it through the night we would know more the following day. 

On this day one year ago I lost my husband as I knew him. His children lost part of their father they will never get back. I lost my partner, my strength and my love. Our family changed that night. 

One year later it's no longer minute to minute it's back to living. This is our new life. He smiles and laughs with me again. He kisses my hand daily and he tells us all how much he loves us. He is home. He is doing physical therapy, occupational therapy and speech therapy. Things will never be like they were before but one year later we are pushing ahead. We are making new ways and Daniel is getting stronger.

We have a long way to go but if we can make it this far in one year I can only dream where we will be on this day next year. 

Thank you to everyone who has stood with us through this. The fight is just getting started and we will continue to need you all in so many ways. Get ready!

...to be continued...


We love you, 
Amanda & Daniel

November
14
2019

HAPPY BIRTHDAY DANIEL

This year has been the most trying of our lives, we have had more downs than ups- more pain and sleepless nights than ever. We are still here. We are still fighting. It broke my heart to realize we were going to be in the hospital again on Daniel’s birthday- then you remember at least there is another birthday. 
 
You have come so far in one year. Think what we can do in the next year!!
 
So happy birthday to the man who still makes me laugh, who is still the kindest man I know, who kisses my hand often,and  who makes all the nurses love him- happy birthday!! Here is to another year around the sun and hope that this next year is a bit less painful, a bit more joyful, and a whole lot more fun.  I love you 😘



- Hospital update- 
We hope to be able to get home today. We are waiting on infectious disease and the wound doctor to decide how they want to proceed with his sacral wound and if any antibiotics are needed. 

After his 24 hour EEG they have determined he has some signs of pre seizure activity but they do not want to place him on medication as yet so we will be following up with neurologist as an out patient. Yay another doctor! 

Thank you everyone for for your continued support and prayers.

we love you 
Amanda and Daniel

November
9
2019

Dupdate from Emory

Morning all, We are back at Emory in Atlanta room G747. We got here about 1am Monday night. Lots of tests and waiting. Daniel has been asleep since 6pm last night … still sleeping. His lack of alertness is a bit off putting. I however was wide awake for his 2am bath and other various happenings throughout the early morning hours. I have spoken to the floor doctor and the attending and there is no ONE reason that is jumping up and down at the doctors and screaming here I am. His wound continues to look improved as does the MRI of it so they don’t believe that is to blame. We will proceed by ruling things out. Finding out what it's not, in an effort to find out what it IS making him lethargic, disoriented and labs a bit off. Today they have planned an eventful day consisting of a chest X-ray, head CT scan, changing his suprapubic catheter, more blood work and blood cultures , ABG test and hopefully changing him to a new bed. My goal for today is many small naps, reply to emails and to crochet....then more naps. May your Saturday be as fun filled as ours.

November
6
2019

Back at Emory a year later

This time last year we were still in Neuro ICU so we have made great progress but sadly not enough and we are back at Emory. 

Dupdate: 
 
We have been moved to Emory University Hospital. Right now we don’t know anything new or different - today has been a day of waiting to see which doctors will come in to see us. We still have to see Plastics, Wound Care - get an MRI and a new hospital bed. We have spoken with the medical team and Palliative Care but can’t come up with a game plan till we have all the players in place. 
 
We have enjoyed the quiet and been able to rest a good bit today. Calls and texts are welcome - visits also if they are short. We are both just worn out and needing some time together.
 
We love you all.
sunrise and sunset from Emory

November
6
2019

November 5, 2019

I'm so tired of posts like this but guys we are back in the hospital.Sunday night Daniel's feeding tube split so we spent Monday trying to figure out the best way to handle it. Ended up telling us to just go to the ER. Easy fix - in and out. So we went ahead and came to Newnan Hospital.
 
Yet, when we got here they ran the normal blood work and his white blood count was a little high so they did some more blood cultures. After 6 hours they did a CT of his abdomen and found that he has the osteomyelitis or bone infection back again.  They admitted us and here we sit. 
 
They were able to change his GJ tube today and start him back on his feedings, called in infectious disease and wound care and GI. They feel surgery is the way to go (all though we have been told no surgery wasn't an option in the past) 
 
They contacted Emory and they want us transferred up there so we will be on the move soon. We are waiting for Emory to call and say they have a room ready and they will transport him to Atlanta. 
 
He's ok - not great but ok. He's getting antibiotics and we just hope that we get some answer with a game plan to figure this out. 
 
We love you all