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June
12
2021

June 11, 2021

Zach finally got to come home today following a 9 day readmission to UTSW for sepsis. He was readmitted 13 days after his big homecoming for a wound infection in his right groin ECMO site that had been very slow to heal.  Ultimately he was found to have MRSA in his blood and wound cultures and a chronic Citrobacter infection in his bladder. All are now under control but not before he had both groin wounds washed out and a second surgery to rotate a sartorius muscle flap over both femoral arteries for additional protection. The right femoral artery was beginning to look necrotic and had to be debrided and repaired using a graft from the adjacent saphenous vein.  He has wound Vacs in both groins and he has a semipermanent IV line because he needs a total of 6 weeks of antibiotics (1week done so far).  We start daily antibiotic infusions tomorrow. 

His kidney function has remained stable since he stopped dialysis. His BUN and Creatinine remain elevated but haven’t gone up so he’s holding steady. In fact, we saw a slight decrease in both numbers this week but we’re remaining cautiously optimistic and waiting to see how the numbers trend. 

Now that he’s home again, we’re trying to get back to a steady routine of medications, therapy to increase his strength and better nutrition to help him heal. He’s still on a renal diet so that means we really have to monitor his sodium, potassium and phosphorus intake. I read every label when I go grocery shopping and its more the rule than the exception that I have to put items back on the shelf because of all the high numbers of each of these. Looks like I’ll be rewriting a lot of recipes and cooking from scratch from here on out. But thats ok. I’m kinda of a health nut anyway and I like the challenge. 

Once again, I want to thank all of you for keeping Zach close to your hearts and ever in your prayers. I remind him frequently of your support and of the positive influence his journey is having in bringing us all closer to God. 

Good night and, in the words of a dear friend, have a peaceful evening. 



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June
5
2021

June 04, 2021

We are back in the Cardiovascular ICU at UTSW and will probably be here for another week. Zach was readmitted on Tuesday night with sepsis and a UTI. His blood cultures are positive for MRSA. On Wednesday, his cardiovascular surgeon took him back to surgery and cleaned out fluid collections and necrotic tissue from both groin sites where his ECMO lines had been. These were repaired during his heart transplant but continued to drain and weren’t healing well so he went in and placed wound vacs 4 weeks ago. The right side became suddenly and severely painful on early Tuesday morning leading to his readmission. Zach is now on broad spectrum antibiotics and we are still waiting on culture and sensitivity reports from his blood and urine. Today, he went back to surgery with a different vascular surgeon who specializes in lower extremity salvage procedures and she repaired his right femoral artery and did flap rotations of the Sartorius muscle on both sides to cover and protect the femoral arteries before putting new wound vacs back in place. 

Zach just came out of surgery 3 hours ago but he is already looking better. He’s sitting up in bed, watching the news on TV and playing Pokemon Go on his phone. If you know of any binge worthy shows we should watch, let is know. 

June
2
2021

June 02, 2021

Good morning 
two weeks ago Zach finally came home after 82 days at the hospital and he has been making steady progress, slowly but surely. He has gone from using a walker around the house to being able to walk independently most of the time at household distances. His wound VAC‘s seem to be doing the job especially on the left side which is almost closed. The right side continues  to be a problem and had been healing slower. Yesterday, he had some changes in the wound drainage and we were concerned that he could be developing an infection. The decision was made to take no chances and he was admitted to the cardiac step down unit at UT Southwestern Clements University Hospital. The preliminary findings are that he could have a urinary tract infection but he’s also having more testing to see if there is a wound infection. He is starting broad-spectrum antibiotics today to help fight off whatever is happening.

I’m sorry that it’s this news that I have to share with you this morning. Things have been going well and we were just enjoying having him home and it has been my intention to give you an update for several days now so that I could share all of his positive progress.

This is also one more step in the learning process of what it’s going to be like in the future dealing with an organ transplant. Those of you who are going through similar circumstances know that you just have to follow all the rules every day without fail and continue to be vigilant in your monitoring. Earlier on I had questioned why we need to continue watching his fasting blood sugars in the morning and the answer made complete sense. One of the first responses to infection is an elevation in blood sugar and with immunosuppressive drugs on board it might be one of the only signs. Yesterday morning his fasting blood sugar went from around 110 to 205. He was also just a little more tired than usual which quickly became feeling out right lethargic.

We stayed with him last night at the hospital and there appears to be a good plan for the remainder of his work up today so I’m back to work and will see him tonight.

On a different note, my sister, Jeanette Potestato, is running a blood drive through the Red Cross in Michigan today. If you live in the metropolitan Detroit area and you don’t have any other plans for today you might stop by and say hello. There should be a dozen or so people there wearing “Zach’s Warriors“
 T-shirts so you can’t miss them.

Thank you everyone again for keeping Zach in your prayers and holding him close to your hearts. 

May
20
2021

May 19, 2021

We have good news!!

ZACH IS HOME!!!

It has been a long road. 
The last 82 days have been focused on guiding Zach through the most significant crisis of his young life. He was just supposed to be going in for a simple heart cath, to evaluate and fine tune his treatment plan, during which he “had an event” that we quickly learned was a sudden and unpredictable cardiac arrest. Within hours we were told that if he didn’t go on ECMO immediately he wouldn’t survive. He hadn’t even regained consciousness yet and wouldn’t for several days after. When he did we had to explain what had happened as he lay there, eyes darting around at a room full of people. Intubated and unable to speak. Restrained so as to protect all the iv and ECMO lines. He must have been terrified but he was too tired to fight. 

We learned that his heart was too weak and that he would need a transplant to survive. So we went thru the arduous process of waiting to see if the transplant team would accept him which seemed like forever but took about 5 days. He was transferred to the adult cardiac program at UTSW Clements University Hospital where it took another week for them to complete their own assessment by which time he was also in renal failure and on dialysis  and had developed a GI bleed. They would never say for sure but there were several doctors on the transplant committee who thought Zach was too sick with too many co-morbidities to move forward. Luckily his surgeon’s vote carried the most weight and he really wanted Zach to have a new heart. So he was listed for transplant and went straight to the top of the list. 

Within a few days we had our first heart offer and we were ready to go when he suddenly became septic and we had to back out. One week of antibiotics later he was back on the list and a second offer came on the morning of March 24 (6 hours after Zach already knew…. “Behold, I bring you tidings of Great Joy”…at least thats how I imagine it happened). He went to surgery that night and his new heart was flown in in the midst of a thunderstorm so severe the plane could not land in Dallas and was driven in from the airport in Tyler 60 miles away. Surgery lasted 10-12 hours. 

Today marks 8 weeks since he went to surgery to get his new heart. He was on the Cardiovascular ICU for an additional 3 weeks followed by the stepdown unit for 25 days and then transferred to in patient rehab for 10 days. He has faced a lot since this all started including his own humanity and will to survive. Now its time to get stronger, get back to God and get back to life. Its time to thrive and become the man he is destined to be. 

By the way, today is my birthday and I got the best present ever!!

May
17
2021

May 16, 2021

Zach has now finished his first week of in patient rehab. He is steadily improving and is definitely tired by the end of the day. With any luck he will be home soon.  2 weeks ago he was a two person max assist to go from sitting to standing and now he is doing it with stand by assist of one person. He is walking with a walker and we began mat exercises today when I was with him in PT. They had been working on mobility issues and I really wanted him learning exercises he can do in bed once he comes home so he can increase his core stability and strength. We also began the process of re-evaluating where he wants to 
be with his life in another year because all steps lead us to that goal. Its a hard road because the process and medications are tough on the body and mind.  

The first blood drive inspired by his journey was held at the Westlake Firehouse yesterday and it was a huge success. 47 of 48 donors showed up and we had several  people show up who wanted to give t hat day (who we referred to the North Texas Orthopedics blood drive this Friday). I am so proud of Deanna Titzler and her family for all their hard work organizing this drive. Thank you!  Thank you! Thank you!  Additional thanks go to our new friends at “Jeffrey Has Heart” who assisted in the blood drive and provided lunch for everyone. They are very active in supporting families of congenital heart disease patients and sadly this morning they informed us that they were helping a family, who’s daughter was battling a congenital heart defect, with her funeral arrangements as she had passed valiantly into God’s arms. Please, Keep them all in your prayers. 

This weekend I reminded Zach that his life has touched many people. That if he has ever wondered if his life has meaning he need not look very far. People are praying for him, some on bended knee and others just asking God to watch over him as they go through their day. More importantly they are reconnecting with God. Those who come from faith are reassured and for others, his experiences have removed any doubt of God’s existence. One blood drive is complete and three more are coming up in short order. As I left him to get rest for his next day I realized that he is really reminding us that all of our lives have meaning and that together we are doing things that make God smile and say well done my child. 

Bless you all


May
11
2021

May 10, 2021

Hello again. 
Tonight I’m happy to tell you that, earlier today, Zach was transferred to the inpatient rehab unit at Zale Lipshy University Hospital/UTSW medical center for the next few weeks to work on building his strength/endurance, mobility skills and activities of daily living (ADLs).  Its been a long journey to get to this final stage so that he can come home with his new heart and his new lease on life. Everything hinged on getting his chest tube out and they pulled that on Friday. It kept acting like it was done draining only to suddenly dump 150-200cc when he got up to the bedside chair. Eventually they just decided to get it out and watch his chest X-ray and that has looked stable since. A small pleural effusion and possible small apical pneumothorax but stable day to day so we got the nod to transfer. He had actually been authorized for a transfer to rehab a few weeks ago but the authorization lapsed and insurance wanted updated progress notes before giving the ok.  It took a few more therapy visits over the weekend and he was authorized. After he completes his first few days we’ll have a better estimate of his length of stay. 

His kidney function tests are still elevated but have also remained stable and there has been no need for dialysis over the last 16 days. The iv catheter they were using for that was also pulled last week. All this indicates improvement and the ability of his kidneys to keep up but not a return to normal function. The anti-rejection meds can be tough on the kidneys as well so we just need to keep monitoring. 

His heart continues to do well and his oxygen saturations stay over 95% consistently. We were so used to his fingers and toes always being a shade of dusky blue. Even his general skin tone had a hint of blue. It was just the norm.  Not anymore.  He’s as pink as a babies cheeks from head to toe. 😄

I asked Zach if there was anything he wanted to say to all of you. He said to just say Thank You! Thank you for following his story and thank you for all the support, prayers and well wishes. He said he reads all the posts and all of your comments and its helped him remain hopeful on his journey.  

May
5
2021

May 05, 2021

Good morning! 
Today marks the sixth week since Zach was offered and received his new heart. His progress has been slow but steady and his doctors have reminded us of just how seriously ill he was leading up to the surgery and that it’s all just going to take time. He is still on the cardiac step down unit at Clements University Hospital and yesterday he had a minor surgery to place wound VAC‘s in each groin because he continues to have significant drainage and wasn’t healing well. They feel that there was probably some damage to the lymphatic system in that area and that it just needs more time to recover. He handled that exceptionally well both mentally and physically. Those lines could stay for the next 2 to 6 week depending on how long they take to heal. 

He still has the chest tube on the right and sometimes it seems like the drainage has stopped for 12 hours only for it to dump 200 to 300 mL when he stands up and walks 10 feet. The chest tube can’t really come out until it’s draining less than 120 mL over 24 hours on a consistent basis. Even then, when it’s removed, they will watch him for a few days to make sure that it doesn’t have to go back in.

His mobility continues to improve. I don’t think he always sees it but he is definitely getting stronger. He’s gone from hardly being able to stand without pain to being able to stand up from the bed with minimal assistance using a walker. He walked 55 feet last week in the hallway but then really hasn’t walked that much since. We had a pep talk this morning with him and one of the nurse practitioners about trying to treat his hospital stay more like a rehab stay and getting him up and getting him moving as much as possible so that when he eventually does go to the rehab hospital it’s just for fine-tuning and building endurance. He understands that he’s going to have to take the bull by the horns in this situation and tell them what he wants to do and set his own goals with the ultimate goal of going back home again. He’s been in the hospital since February 26. When I left him this morning he had a smile on his face and a positive attitude in his heart.

The two Texas blood drives are coming up sooner than we think. I’m pretty sure both of them still have openings for donors. The one in Westlake on May 15 has room for 45 donors and last I heard was well over 30 signed up. The one at my office on May 21 has room for 60 donors and last I heard had 42 donors signed up as well. My sister Jeanette, who is organizing a similar drive in the Detroit area on June 2, has decided to come down for the drive on the 21st to help us out in anyway possible. She is a dynamo so I know there will be no rest for me while she’s here. I’m looking forward to it.

On a different note, our youngest son Alex graduates from high school, at Westlake Academy, at the end of this month and my daughter Savannah is finishing her fourth year at Texas A&M where she is in the Mays business school. She will be going back this fall to finish off some courses and to decide what her next step would be. She’s an exceptional student but the job market is not great for what she wants to do right now. Ideas on the table include working towards a second major or possibly even going directly to grad school if a job cannot be found. Since I know I’m reaching out to many people with these posts, her dream job would be to work for Nintendo. If anyone knows someone in the gaming world we would gladly take the referral. Savannah has been doing classes from home and we need to go back and clean out her apartment this weekend. Fall semester is all face-to-face so we have to find her a new place to stay as well. In the meantime Alex and Savannah have been holding down the fort at home and have been gracious and understanding that right now we all have to be focused on Zach. 

Every day we move a forward. Everyday a little stronger. 

May
1
2021

April 30, 2021

Sorry for the lapse in updates, its been a very busy week. Rest assured, Zach continues to do well!  His kidney functions are still elevated but they have been stable enough that he has not required dialysis since last Friday. He said his urine output is over 1000cc daily and his daily weight is stable. His kidneys are getting better. We’re just watching and waiting to see how much better they get. Still praying for a full recovery. 

He had another heart cath today with a biopsy and we are waiting for that report as well. His prednisone is down to 20 mg daily from a starting point of close to 100mg per day and his other antirejection med levels look good.  When he first got on the transplant list we asked what the life span of a heart transplant is and we were told the average is about 13.5 years. As we talked to more people and learned more about life with a transplant we learned of people who’ve been going with the same donor heart for 20-30 years. The key is never miss your medication dosage. Meds are to be taken every 12 hours at 9am and 9pm. Levels are checked at every visit and one of the nurses said its not unusual to be admitted for a quick iv and tune-up if your levels are off. So yes, thats a reminder to all of Zach’s buddies; don’t let him leave home without checking that he has his meds and set an alarm when you’re out with him so he’s sure to be on time.  

His right sided chest tube continues to drain a fair amount but hopefully will come out sometime soon. The staples in his groin incisions from ECMO finally came out today but he’s had so much continued drainage from seromas that they put a wound vac on both of them to help get them dried up.  
All the tubes need to come out before he can go to the rehab unit and that now looks to be another week away at least. Just as well, they apparently don’t have a bed for him anytime soon as they are currently running a full census. 

Speaking of rehab, Zach stood with assistance today and walked 55 feet. Just a few weeks ago he could barely do heel slides in bed.  
Way to go Zach!!


 
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