U of M evaluation

Hey there. Tuesday we met with the transplant team at U of M Motts Hospital. We met with the same physician and nurse practitioner we met on zoom last month. Today we actually met with those same two people for a more detailed evaluation, an EKG, an ECHO, and a 6 minuite walk test to see what Kendall’s oxygen levels were while doing an activity like walking.

She also had a lot of blood tests done. The overall outcome is that U of M will continue to do their own evaluations, consults and tests to come to their own conclusions and let us know whether or not she is listed on their transplant list. Upcoming appointments in the next few weeks will be: having a cardio catheterization to see what the blood flow pressures are in her heart and a CT scan to see all of the blood vessels from head to toe so that they know the overall over circulation in her body.

They told us that the entire consultation process will be 2-3 months to see all of the department services

(Lung, surgery, nutrition, psychology, kidney, liver, stomach and social worker).

Some of the information is familiar but we also have a lot of research to do about learning how hospitals operate the same but also how they operate differently.

As of today, Kendall is only listed in Pittsburgh until the evaluation in Michigan is completed.

Overall, today we were pleased and confident on the expertise of the people that would be taking care of her pre/post transplantation. Ultimately God has the final say and we are confident and reassured that wherever/ whenever the call comes, it is the heart that God has already pre-assigned to her.

Once we got home from the visit we talked about any questions or concerns she had. We always want her to know she can ask questions of the doctor and of us(her family) when she is confused or afraid.

Her concerns were mostly about pain from surgery vs routine tests. So we talked about those issues and will make it a point to continue to reassure her to ask questions during appointments, after/ or in between appointments, and during the process of waiting.

Thank you all for past and future prayers on this journey

#TeamKendall

#HRHS

February 18, 2024

Hello everyone. Hope you all are well. Thanks for all of your continued support especially this month by wearing Red and wearing your Beautifully Scarred shirts on Thursday the day of her appointment!!!

First update: Kendall’s lung doctor(in Detroit) ordered a sleep study because her oxygen levels have been in the 80s the past few appointments and she wanted to see what her levels were when she was sleeping. Oxygen levels were mid to low 80s while sleeping so the doctor wanted her to have low dose oxygen at home. Primarily at night but also during the day if she feels tired, short of breath or oxygen level is 80s. Since we have to check her oxygen level 3 times a day now, she is actually as high as 94% during the day. Before she goes to be if it’s in the 90s I don’t put the oxygen on her because the cardiologist doesn’t want it above 95%. Oxygen levels too low or above 95% are not good for her condition. It’s basically a balancing act!!!

We have been going this for about a month now.

For a few different reasons we have decided to have her listed in 2 hospitals at the same time. She is being evaluated at U of M Motts children’s hospital to see if they will accept her as a patient. The evaluation consists of meeting with all specialists (heart, lung, liver, stomach, surgeon etc..) also having an MRI an a cardiac catheter. They will do the same tests she had in Pittsburgh but each hospital has to do their own tests because they may or may not agree on the same plan of care. The only reason U of M would say that she is not a candidate for their transplant team is because of her lungs. In their evaluation if they decide she needs a lung transplant also and/or feel she is too high risk, then Pittsburgh will be the only hospital she will be listed at (reason being is U of M does not do heart/lung transplants) and Pittsburgh does if it was necessary.

The process takes several months to get all of her tests done in Ann Arbor so in the mean time she will continue to see the doctors in Pittsburgh and also at Detroit Children’s Hospital for any checkups needed in between visits. I know this probably waaaaaayyyy too confusing to everyone but I hope it makes sense.

When U of M completes their evaluation and she is accepted she will then have a dual listing and her chances of getting a new heart will be increased. Which ever hospital gets the call for a donor heart for her, she will be transplanted at that hospital.

We are still believing God for another miracle and so thankful that she is well enough to be at home while she waits.

Thank you all again for going through this journey with us. It means the world to us

#TeamKendall

#heartwarrior

December 28, 2023

Happy Holidays to everyone and your families. The gifts under the tree are nice but being with the ones you love is the best gift we could ever receive. (my opinion)

Quick update. Kendall had a routine appointment with the lung specialist Kendall’s oxygen level typically varies from high 80s to low 90s. However, the doctor was concerned that they have always been in the 80s and never the 90s at her last few appointments so she suggested a sleep study.

Kendall did the sleep study at home last week and her oxygen level was monitored all night while she slept.

I just received the results from the doctor and she stated that Kendall could benefit from some low dose oxygen while she sleeps and also during the day if needed.

This is how the doctor explained the reasoning for the oxygen to me: We want Kendalls oxygen levels to be upper 80’s-90s at all times. When we are sleeping, everyones oxygen levels may typically go down a little but Kendall doesn’t have the reserve like you and I do because ours would still be in a normal range. If Kendall is already in the 80s, when she sleeps it could go lower than that and we don’t want that to happen. Even during the day if she’s tired, short of breath etc….we can put the oxygen on her. It’s portable so that we can take it anywhere and use it if necessary.

We have been down the oxygen road many times so we are not worried this time around. She’s getting taller and gaining weight so it all makes sense that this would be something normal that would happen as her body adjusts to all of the changes.

I may borrow her oxygen every now and again when I go up and down the stairs lol

Happy New Year to all of #Team Kendall

Cewanda and family

#HeartWarrior

#HRHS

December 10, 2023

Hey #TeamKendall. Hope all is well with everyone.

Just wanted to update you on the pulmonary appointment last week. Doctor says Kendall looks/sounds really good as far as her lungs go. She wants to do a sleep study at home. at home because Kendall’s oxygen levels have been in the high 80’s lately. Her normal is high 80’s-low 90’s but at her last couple of appointments she has been in the 80’s.. The doctor just feels that she should have oxygen at home just in case she needs it during the day. She will wear oxygen at night because we don’t know what her oxygen level is when she is sleeping and this will give her a little extra. The results of the sleep study will give us a pretty good idea of what her normal range is while she sleeps. Even if she walks around with it during the day or when she goes up and down the stairs it will help her. The doctor said she probably only needs 1% or so to give her that extra boost. We’ve done oxygen before and every other piece of equipment over the years so this is nothing!!

I think I need the oxygen more than she does going up and down the stairs. Whew…lol

#TeamKendall

#Heartwarrior

#HRHS

#CongenitalHeartDisease

November 16, 2023

Greetings. Everything went well today. EKG and Ultrasound both looked the same as last time so she is still stable enough to be at home.while waiting. God is good!!! Thank you for all of the prayers, texts, social media posts, and for wearing your Beautifully Scarred shirts. That really makes us smile to know that so many people care and continue to show love and support. We can’t thank you enough.

God Bless you

#TeamKendall

May 21, 2023

Looking at the date since my last post it has been a couple of months. I consider that a good thing. Still waiting for the transplant call. She is not “sick enough” to have to wait in the hospital as a patient. That’s a win for us!!!

Wednesday she had a physical with the primary adolescent doctor. The doctor is going back to school so Kendall had to be transferred to one of her colleagues for future care. Great for the doctor, wish her all the best, but we are sad. Really liked her and Kendall enjoyed talking to her 1:1. But life goes on and I know the new doctor will be just as good or even better. Everything checked out well from head to toe. Doctor suggested we take her to an optometrist because she didn’t score in a normal range for her left eye. Okay. No big deal. We can do that.

Next follow up appointment with the new doctor will be in 3 months. As the doctor was leaving the room she gave me a paper to give to the front desk to schedule the appointment. I glanced at it and saw the diagnosis of “congestive heart failure.” I’ve seen it written and heard it said before but for some reason that day it caused me to be mad, sad, angry and scared a little bit. I don’t ever say she is in heart failure but when I see/hear something with those words on it, it’s not easy to smile for a while because I see how well she is doing and does not need to be admitted into the hospital and that makes me feel grateful and thankful. 14 years of life and so many more to go. That new heart is coming, but in the meantime I will focus on hope and confidence that God is in control and He knows exactly what He is doing.

This month is also the 3 month check up that we would normally go to Pittsburgh. Thankfully we do not have to go to Pittsburgh this time. The appointment will be at Children’s Hospital in Detroit this coming Wednesday. We will go to Pittsburgh in August for the next check up.

All is well. Still navigating through 8th grade Virtual Learning. No explanation needed for that!!

Kendall is 5’4’’ now. OMG.

We are trying to find summer programs to enroll her in so that she can connect with other teens around her age. We want her to have those conversations and experiences with kids around her age to help with social skills. Virtual learning doesn’t really allow her to have friendships that she looks forward to. She needs that so that high school isn’t such a culture shock whenever she is allowed to go back to school.

As for now we are still doing virtual learning and awaiting for the transplant call. Trying to find different events that will help with interaction with people/kids her age. Looks like high school for Kendall will not be in person for a while but that’s ok. Can’t send her to school before the transplant and up to a year afterwards to protect her immune system.

It’s unreal because we have packed and re-packed our bags 3 times with the change of seasons. But she is doing well at home while waiting so we are grateful.

It’s hard to believe that July will mark 1 year since she has been on the Heart Transplant list. Of course we want her to have her new heart but also grateful it didn’t happen during Quentin’s senior year so we didn’t have to alter his experience because of his sister. But now that senior year is coming to an end, we are grateful, ready, and prepared for the call whenever God has the perfect heart for her.

Thank you for your continued support!!! We love each and every one of you..

xoxoxoxoxoxoxoxoxoxo

#TeamKendall

#BeKendallStrong

#HeartWarrior

#HRHS

March 16, 2023

It has been exactly 1 month since the last post. A lot has happened so I will catch you up.

4 weeks ago Kendall and I were Covid +. Thankfully both of us had very mild symptoms. Because of Kendall’s heart/lung condition, the doctors were not taking any chances on her symptoms getting worse. She was admitted into Children’s Hospital Detroit for 3 days of a IV medication called “Remdesivir” to help decrease/prevent any symptoms from getting worse. Thank God the symptoms were only mild the entire week of being Covid+. Also because of the Covid diagnosis she had to be paused on the heart transplant list and was not able to accept any offers if they came. She did not lose her spot on the list. It was just put on hold until the infectious disease doctor gave her okay that it was safe to receive a new heart if an offer came . I am happy to report that she is again now able to accept a new heart if offers come.

2 weeks ago Kendall had a follow up appointment with the cardiologist in Detroit to make sure everything was going well after Covid. Everything was good.

Today we took her to her primary care doctor about a rash she has had on both her legs for 2 weeks. Doctor feels that it is not major and believes it is from contact with something that irritated her skin or she was allergic too. No medications ordered.. Simply vaseline, hydrocortisone, and all hypoallergenic and skin sensitive products on her skin only.

She has been able to handle more physical therapy at home before she gets tired. She is walking longer distances before she needs to stop and take a break. We have to motivate and push her more but once she completes an exercise, she has the biggest smile of accomplishment on her face.

Thank you Cecilia and Georgia Cook @Karly Amanda for your very sweet and thoughtful goodie snack basket for Kendall!!!

Next appointments are: Cardiology/Transplant team and a head-to-toe physical from primary care doctors in Detroit, both In May.

xoxoxoxoxoxoxoxoxoxo

Cewanda

#TeamKendall

#HRHS

#heartwarrior

#BeKendallStrong

February 16, 2023

Good evening everyone. Wanted to stop by and give the updates on last weeks appointment.

First stop was the lab. We always have the Child Life Specialist meet us there so she can help with distraction and breathing exercises during the blood draw. They had to draw 10 tubes of blood. Kendall was a champion!!! Since we located the “good vein” last year that is right next to a mole on her arm, only one poke was required.

Next was EKG, ECHO and then cardiac transplant appointment . Everything is stable and no changes were made.. The doctor said that he would consult the transplant team at Children’s Hospital in Detroit to talk about alternating care back and forth. Meaning: in 3 months have a check up in Detroit, 3 months after that we go to Pittsburgh, 3 months after that Detroit etc… He said that as long as she remains stable while waiting for the new heart, he’s comfortable with that plan. Also he wants doctors in Detroit to still be familiar with what’s going on with her just in case we had to go there for any reason. Makes sense to me and less travel for us!!

All good news!!!

Cewanda

#TeamKendall

Tuesday February 7, 2023

Happy Tuesday everyone. Just wanted to give 2 quick updates.

Kendall had 2 appointments last week-primary care and lung doctor. Both appointments went well and nothing new to tell you about that.

We are going to Pittsburgh tomorrow February 8th for her heart transplant evaluation that is due every 3 months until transplant. She will have blood work done first. Then go to the cardiac clinic for ECHO, EKG and then be seen by the doctor for examination, go over results of 3 tests I mentioned above, then we talk about how the last 3 months have been going, updates etc….

I will update you later this week on how the appointment went.

Cewanda

xoxoxoxoxoxoxoxo

#TeamKendall

#heartwarrior

#HRHS

#BeKendallStrong

January 18, 2023

Hope everyone had fantastic holidays!!! I’m going to make this post really quick and to the point(I really am this time). lol

Kendall has been doing great besides one week of a cold, fever, runny nose and congestion that we were able to manage at home with fluids, tylenol/motrin and extra inhalers(for the wheezing).

The first semester of virtual learning is coming to an end next week.

She has routine follow-ups with the adolescent clinic and her lung doctor on February 1st at Children’s Hospital in Detroit.

It is time for our next 3 month check up in Pittsburgh with the transplant team in early February.

We are having a fundraiser at Qdoda in Rochester Hills Saturday January 21st from 4p-8p. I have posted the flyer on Instagram and FaceBook if anyone is interested in coming to support.

Hope you and your families are well and have many blessings in 2023.

PS If you haven’t already seen it, check out the article we did for voyagemichigan.com—Conversations with Cewanda Todd. You can find it on my social media pages or on the website itself.

Until next time……xoxoxoxoxoxoxo

Cewanda

#HRHS

#TeamKendall

#KendallStrong

#HeartWarrior

November 12, 2022

We are back from Pittsburgh safe and sound!!

First, the blood draw was successful. The child life specialist was there for distraction and calming techniques. Kendall has a birthmark/mole landmark on her right arm that is the go to vein and it is key to getting all of the lab work needed. She was so calm this time, told the lab tech where to poke her and wanted to watch to make sure she got the right spot. lol

ECHO(ultrasound of the heart) and EKG were stable. No changes.

Appointment with Dr Zinn, Kendall’s transplant cardiologist was good. Kendall updated him that she was drinking more water, started drinking Propel(his suggestion last visit to swap for sugary drinks), eating more vegetables and trying new foods. He said “Kendall I have known you since you were a baby and this is the most you have ever talked to me.” lol

We discussed different scenarios that could put her on the list in a higher category, all of which would would require her to be sicker, more critical and hospitalized in Pittsburgh. That’s okay. We would prefer to stay in Category 2, stable and at home and receive the call that way thank you very much.

Still has some shortness of breath when climbing stairs but self corrects and goes back to her baseline after a few minutes. Doctor is not concerned about that as long as she’s not gasping for air or having a harder time breathing. She has some slight swelling in her ankles and lower legs that is most likely normal just from sitting in a chair during virtual classes. He told us to keep an eye on it, swelling in her belly, hands or face, and let him know if anything changes.

Plan is to return to Pittsburgh in February if we haven’t gotten the call for transplant before then.

Thank you all for the ongoing love, prayers and support. This journey is much easier with you on it with us.

xoxoxoxoxoxoxoxoxo

#TeamKendall

#HRHS

#heartwarrior

#BeKendallStrong

November 8, 2022

Happy Tuesday!! Just wanted to send a quick update about Kendall. Everything has been going well and really nothing new to report about her health. She does have a 3 month checkup with the Cardiac Transplant Team in Pittsburgh in 2 days. I will send updates after we return from that appointment.

There are 2 fundraisers that are going on at the same time. One is for Kroger grocery store(and some affiliates in other states). Proceeds from everyone’s shopping will go into www.cotaforkendall.com on a quarterly basis. All you have to do is register on the stores website. Details are on another Facebook post. Also there is a fundraiser for Kendall at Nothing Bundt Cake. All you have to do is place your order and pay $6 per cake and it will be delivered to you 12/2/2022. 20% of the proceeds will go to www.cotaforkendall.com as well. Check my Facebook posts to see how you can help.

xoxoxoxoxoxoxoxoxo

Cewanda

#Heartwarrior

#BeKendallStrong

#HRHS

#TeamKendall

Octoer 4, 2022

How has it been 2 months since my last post?? It doesn’t seem like it has been that long. But I am also thankful because long periods of not hearing from me means that everything is good!! Kendall has had an uneventful Summer.

The only new updates I have right now is: she now has her splint on her left lower arm/hand that she wears pretty much all day with breaks. At therapy they always check her oxygen levels before any physical activity, during and after to be cautious of how well she is doing or if they need to take a break etc…Last week before physical therapy started they did a baseline oxygen level and it was in the 70s. Her normal oxygen levels are usually high 80s, low 90s. Therefore, she had to rest and not do anything strenuous during that session. She did recover after a while and her levels went back up to normal. During the 70s she never felt any different or had any complaints.

For about 2 weeks, everytime Kendall walks up stairs she is more tired and short of breath and she needs to take a short break and just sit still until she recovers. Not when she is doing other activities, only the stair climbing. We have been checking her levels at home and they have been in the normal range.

With these 2 events happening: increased tiredness and shortness of breath during stair climbing and the low oxygen levels at therapy, I called Pittsburgh doctors to let them know what was going on. They suggested that we go see her local transplant team at Children’s hospital in Detroit.

So yesterday she had an appointment with them. Oxygen level, Ekg, and ECHO looked fine. Their only suggestion was to contact the lung specialist and see if they wanted Kendall to use her inhaler right before or immediately after stair climbing if she needed it.

We are pre-scheduled to go to Pittsburgh November 10 for a follow up appointment. We are scheduled to go there every 3 months for testing until a heart becomes available for transplant.

All is well. We are getting through 8th grade virtual learning!!! Pray for her instructors, me and Damon lol

xoxoxoxoxoxoxoxoxoxoxoxoxoxo

#TeamKendall

#Heartwarrior

#BeKendallStrong

Pittsburgh updates

Hey there. On Monday Kendall had the ENT airway procedure. We met the doctor prior to the procedure and felt very confident that we had the best doctor on the case. He said that he had gone over the notes and cds of her airway from Children’s Hospital in Detroit thoroughly and he and his team were prepared for any/everything that he might find.

Also met with a very skilled, compassionate and empathetic anesthesiologist. She came in with a PA and a CRNA. She said that she is 1 of 5 cardiac anesthesiologists and she also thoroughly reviewed notes from previous anesthesia situations and Children’s Detroit and was prepared for any every/thing that could happen and she had 2 other anesthesia team members with her. She said when she read the notes from years ago that it was unknown if Kendalls 45 minute cardiac arrest was related to her heart or to the anesthesia that was given to intubate her after an ENT procedure, she would not leave the operating room. She said typically when she put a patient to sleep and they were stable, she would leave the room to go and check on other patients but she told us to rest assured that she would never leave Kendall’s bedside.

This was the first time Kendall went into the OR without either me or Damon. She wasn’t scared and she didn’t need us to help calm her down until she was asleep. We said a prayer and she waved at us as they were wheeling her down the hall. We were so glad she was comfortable with the staff and everything that was going on around her so that helped us all to have peace.

They scheduled the OR for 1 1/2 hours. The anesthesiologist called my cell after about 30 minutes saying she did well and the procedure was over. I was like “huh, say what??”

The ENT doctor came out and said he was pleasantly surprised and impressed by what he saw. He was expecting and to see worse based on previous pictures. He said that her airway is smaller than a someone her age and size but it wasn’t worth it to dilate it because she doesn’t have trouble breathing day to day. He said there was some scar tissue from previous procedures but trying to use balloon dilation or laser would cause bleeding and more scarring. He said that their team will no longer need to be there for the transplant and that the anesthesia department will be well informed through his notes on what size tube to use and she shouldn’t have any problems being intubated or coming off ventilator when the time is right.

Cardiology appointment was the next day and that went well too. She had and ECHO and EKG that the doctor said was unchanged, but not worse or concerning. Plan is to have a follow up appointment with him in Pittsburgh in November if she hasn’t had the transplant by then.

As far as travel for the transplant, we found out the the flight company only allows 1 parent to fly with her when we get the call so we are making plans for that. We are not sure which airport we will fly out of but we are getting prepared. Since Damon is driving, now he will be able to bring a lot of things with him that we will need over the weeks/months we are there.

They reassured us that it takes several hours for the whole process to even start so Damon would have plenty of time to get there before the surgery is even started. There is so much prep work involved before the heart even gets to Pittsburgh which is why they want Kendall flown there which is less than an hour. They also said it doesn’t happen often but be prepared that once the surgeons physically see the donor heart, they may decline it and cancel the transplant if they don’t think it’s the best fit or match for Kendall and send us back home. Of course we are grateful that they are so careful and meticulous but this is a Lifetime movie…..a lot of different feelings, thoughts and emotions surrounding this but because everything is falling into place perfectly, I know the outcome is going to be one that has not been written in the medical books/journals yet. God has truly been good to us and the miracles that keep coming strengthens our faith.

#TeamKendall

#BeKendallStrong

xoxoxoxoxoxoxoxoxoxo

July 13, 2022

I haven’t posted anything in almost 2 weeks. Doesn’t feel like it has been that long but when I just looked at the last post date I was like “no way.” lol

Don’t get it twisted(because contrary to what people think, you are busier when you are at home than you are when you go to your job that pays you. Whether you are running a household, taking care of kids/loved ones, have a personal business/company, or in my case waiting on a heart transplant call), don’t assume that those of us who don’t punch a clock are at home twiddling our thumbs and bored with nothing to do. So “stay at home moms” don’t just stay home and do nothing!!! Whew that felt good…..I am busier now than I EVER was being an RN. This is not a complaint because I am very fortunate and beyond blessed that I can spend this time with Kendall and my family and be available to take her to all of her appointments. It’s something about this time right now when I can blog that I talk about things I didn’t intend on. My intentions are only to give updates but sometimes I have to vent.

A few people have said to me “so what do you do all day?” Aren’t you bored? Shouldn’t you be working since there is nothing going on with Kendall right now?” My response is this( the responses that I will give that won’t get me banned from social media) is 1-mind the business that pays you 2- you have no idea of all of the work, planning, phone calls, emails, stress, and mental/physical preparation that goes with this. 3- I am so glad that you don’t know what this is like on a personal level.

Ok so now for the updates!!! Kendall has been in PT/OT/Speech therapy for almost a month now and it is going well. She is definitely benefiting from it. She is doing all kind of exercises that is strengthening her core, legs and arms. She has some exercises that she does at home too like: getting on the floor and getting up without assistance, using dumbbells while sitting on an exercise ball, using a stationary pedal machine for her legs, and picking things up from the floor by squatting and not bending at the waist. She’s been taking walks to the corner and back and we check her oxygen levels before she starts, at the corner, and when she returns home. They have been consistently 91% to start, high 80s at the corner, and mid 80s when she gets back home. She does it all without taking a break and when she gets home she just needs a few minutes to recover and get her breathing under control. This is a big accomplishment!!!

She has an appointment tomorrow before therapy at Wright and Filippis to get measured for a hand splint. I’m not sure if she will have to wear it during the day or just at night. She needs it so she will be forced to keep her left hand open and use her fingers.

So basically what we have going on right now on a regular basis is therapy every Thursday for 2 1/2 hours. Psychology appointment every 2 weeks. We are headed back to Pittsburgh on on July 31st for ENT procedure on Monday August 1st and an appointment with cardiologist on August 2nd for EKG and ECHO. Then we have to return to Pittsburgh for the follow up ENT appointment on August 24th.

I wanted to give thanks to all of you that have continued to support us in every way. Whether it is prayers, texts, posts, physically, emotionally, financially, sharing her journey with others, purchasing t-shirts/books, and/or words of encouragement from friends and strangers, thank you is certainly not enough. Without you we could not do this and alone. So we are forever grateful for all of you.

xoxoxoxoxoxoxoxoxoxoxo

Cewanda and family

#BeKendallStrong

#TeamKendall

Also thank you so much for your personal donations to us and those through www.cotaforkendall.com.

COTA has really been good to us. Even though we haven’t reached our financial goal, we have still been benefiting from contributions and donations from you and others. All donations help families of children that are waiting on a transplant. We are witnesses that your donations through this organization is definitely reaching us and our needs are being met for sure.

Also thank you to Miracle Flights who is covering the expenses of our flights to Pittsburgh in a couple of weeks. Miracle Flights took care of our flights in March and they are helping us again. Thank you!!!!

How I'm feeling(me, mom,Cewanda)

Greetings to you all. It has been 2 weeks but it seems like it’s been 2 days since I posted. I swear to you, there is a lot of busy work to do while “waiting” to get a transplant call. Trust and believe I am busier now than I have ever been. Think about it—-you have to make plans for who’s going to take care of your household while you’re gone. Just think of all of the things you do to run your household then picture you have to leave for a couple of months at the drop of a dime. That’s a major transition.

Don’t get me wrong, the sacrifice is all worth it because we have 2 great kids-Sydney and Quentin, my mom, our church family, our neighbors and close friends who we know without a doubt will take care of anything we need them to with just one phone call. I’m not worried about any of that because I know everything/everybody will be taken care of. I guess it’s difficult because I just rather do things for other people than being the one that needs help. Maybe it’s the nurse in me. It’s hard to shut that off and be taken care of rather than being the one that wants to make sure everyone else’s needs are placed before our own. Can I get an amen from my fellow healthcare workers??? And yes it’s true, we make the worst patients for this same reason. lol

Even though I know being with Kendall in Pittsburgh is where I will be, want to be, need to be and have to be, I feel torn because I can’t be here in MI physically for my other 2 kids and my mom. But……I know that I am tripping right now and they are going to take care of each other and everything will go smoothly here because we are all on the same page and will support each other through this even across the miles.

I have had several days recently where I have had extreme sadness and quiet tearful moments. Not because I don’t believe that everything will be ok, but more so because of the seriousness of the surgery, rehab, watching your child be in pain, and the fact that we are in another state and we can’t have family there. Covid sucks and it has got to go!!!!!

Although I think it may be better that way in the long run because I want her siblings and grandmother to see her when she is in the rehab phase and she is feeling better and stronger.

It was never my intention to type all of this but I needed to say how I am truly feeling right now. I am absolutely grateful for the blessings this heart transplant will bring for Kendall and all of us that are connected to her. We are all invested in the details of how her testimony and story continues. At this point if you are connected to her journey, I hope that everything that happens from this day forward affects your life too, in a positive way. So many things have been falling into place during these last few months that I know it could only be God that is setting it up in Kendall’s favor. It is my hope that if nothing else, our faith and love for God will be increased because Kendall has been an example of walking miracle on Earth for 13 years and she has never, not once complained.

I initially started this post to give you updates on the 2 appointments she had this week but I was overcome with emotions and real feelings so that’s what I am typing. People say I am so strong everytime they see me. I’m not denying that, even though I don’t always agree. Maybe I am stronger than I think. But most times I feel like it is a mask I put on so that no one sees the devastation and pain I truly feel sometimes. This is my baby and I am hurting because I don’t want her to suffer one day in her life.

I am grateful and thankful for the gift of life she will receive from her donor. I do not take that lightly or for granted and I will spend everyday for the rest of my life sharing her story, giving others hope, and most of all being an advocate for anyone who needs support and affirmations that they can get through their situations.

I am in a place right now where I am not going to be unapologetic for my feelings that I am working through. We are all human and cannot pass judgement on someone else when we don’t know what they are going through. I know everything will work out just like it has before and I am a believer. If you are on our team, we thank you. I know that it is not just our family who is invested in Kendall’s life/journey and we thank you for your commitment to our family.

Thank you for your consistent love and support

Cewanda

#BeKendallStrong

#hrhs

#hypoplasticrightheartsyndrome

#TeamKendallT

Who's on the heart transplant list? Kendall that's who!!!

I know it has been a few weeks since I posted an update. The appointment with the lung specialist at Children’s Hospital in Detroit went well. It was basically a scheduled follow up wellness check. The doctors that she has here and the doctors in Pittsburgh alternate seeing every few months so that we don’t have to go to Pittsburgh for all of her doctor appointments. They will communicate with each other regarding her care and status.

We received the phone call from the transplant team on this past Thursday that Kendall is officially on the transplant list. They decided to do a heart transplant only. No lungs!!! After reviewing all of their tests they concluded that her right lung was functioning well enough on its own. Proceeding with a double lung transplant and heart at the same time would be very risky. They also said heart transplants are much more successful when done without any other surgeries if possible.

When we told them our road trip was around 5 hrs to Pittsburgh last month, they said they don’t want us to risk running into any traffic, construction etc….that could slow us down and cause us to miss out on the opportunity to receive the heart. The team is now working with a private plane company that will fly us out in their private jet when we get the call. Because a heart could be available at any time of the day or night, a pilot would always be on stand by to get us to Pittsburgh. So at this point we should always have bags packed, phones on, and be ready to go at a moments notice. This feels like a movie and a dream come true at the same time!!!!

There’s at least 20 more details that we were given to us but I will give them to you in small doses as they become more official.

xoxoxoxoxoxoxoxoxoxoxoxoxo

Cewanda

#TeamKendallT

#HRHS

#hypoplasticrightheartsyndrome

#BeKendallStrong

May 28, 2022

Good afternoon. Sending updates on this past weeks Pittsburgh visit. There were so many positive things that made this trip so amazing. We had so much favor from day 1 and throughout the trip.

-Went to pick up the rental car the morning when we were leaving. They didn’t have any mid-size cars so we were upgraded to an SUV with no extra cost AND told us we could bring it back a day later than we planned so we didn’t have to rush back before they closed.

-We didn’t know where we were going to stay because the Ronald McDonald House doesn’t let you know if they have availability until the morning of your requested date. I called them Tuesday morning and they said they had just received word that a family would be leaving and we would be able to stay there for the 2 days. So we didn’t have to find a hotel at the last minute. The drive was about 5 hours.

-Wednesday morning was the ENT appointment. Kendall couldn’t have anything to eat after 11am for the cat scan. We are in the ENT office and the doctor comes in and tells us he never received any records from ENT in Detroit so he could only go by what we told him as far as her history was concerned. I was so pissed because I know exactly what happened. Those records were supposed to be sent to Pittsburgh in March by the previous coordinator that we had but of course she didn’t follow through. Another reason I am so glad we have a new coordinator because she always follows through with what she says she is going to do and always communicates with us. So we sign new paperwork to get her records sent over and I personally called our ENT nurse in Detroit and she was going to handle it. The doctor said his recommendation is for Kendall to come back to Pittsburgh for an airway dilation/laser and/or balloon procedure. No matter what her previous Drs report her airway looks like, they want to do their own evaluation so they know the exact size prior to transplant. With that being said we have to go back for that procedure and stay overnight in the hospital. Three weeks after that we head back there for a follow up appointment. There were no available appointments until August 1st so she is scheduled for that date. If there is any cancellations they will call us because they want to do it sooner if possible just in case she is able to get the heart transplant before August. Obviously they would rather do the dilation procedure ahead of time so that she can come off of the ventilator to prevent further swelling that will increase the risk of her not being able to come off of it as soon as possible.

-That morning I received a phone call from the transplant coordinator and she told us that Kendall might be able to have the MRI that they initially wanted(the one with the iron contrast) instead of the cat scan. She said she would call back and let us know.

-Since we didn’t hear anything by 2pm we went to the registration department for the cat scan. Person registering us didn’t have any order for an MRI so we figured that it wasn’t going to happen. The child life specialist showed up just like she promised to help Kendall get through the IV and procedure. While we were in the waiting room a doctor came in and said he was the Cardiac Radiologist/Anesthesiologist. He said he never works on Wednesdays(remember they told us they only did cardiac tests on Tuesdays and we couldn’t get in until July). He said he “just so happened” to come into work that day because they had a busy schedule and he volunteered to stay so that Kendall could have an MRI. We were so happy. Happy is an understatement. Things just kept working out in our favor.

-Everyone was under the impression that Kendall needed to have general anesthesia for this so that is what they were planning. What we requested and understood was that she was going to only get mild sedation just so that she could get through the test. There was no way she was getting general anesthesia after what ENT just told us.

-What ended up happening is that they gave her some nitrous oxide while they put her IV in and that helped a lot. They gave her a lot of reassurance and coping skills that she could do while she was in the machine because they really didn’t want to sedate her if they didn’t have to. She chose a movie to watch, they gave her headphones and goggles to see the movie out of, and she did great. They let me stay in the room and let me rub her head from time to time just to let her know someone was there.

-When she came out of the machine she said it was still very loud but the movie she was watching made her laugh and that’s how she got through it.

-We didn’t see any other doctors after that so I assume that they will call us after the holiday and give us the final decision.

xoxoxoxoxoxoxoxoxoxoxo

Cewanda

#TeamKendallT

#HRHS

#BeKendallStrong

#hypoplasticrightheartsyndrome

#heartwarrior

Pittsburgh next week

It’s me again. Just got off the phone with the coordinator and Kendall is scheduled for a CT scan and evaluation by ENT on next Wednesday the 25th. We will drive this time to give us a general idea of how long the drive will be. Okay I updated you last night so that’s all I have for now!!!

xoxoxoxoxoxoxoxoxo

Cewanda

#TeamKendallT

#HRHS

#hypoplasticrightheart

#BeKendallStrong

****if you have your t shirts I will send a reminder next week to wear it on Wednesday in support of Kendall

If you don’t have a t shirt and/or book you still have an opportunity to place an order by May 31st so that you can have it before Transplant Day.