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.

Tuesday May 17, 2022

Good evening all. Just wanted to send updates about this week of appointments.

Monday Kendall had an appointment with transplant team at Children’s Hospital for a check up. EKG looked good, blood pressure and heart rate good, oxygen level 91% (which is low for us but good for her). According to the doctor there was no need for an ECHO today because she will probably have one when we go to Pittsburgh. We pretty much just talked and caught the doctor up with what has been going on. Plan is to stay on the medications she is on unless we are told otherwise. The doctor also said that a heart catheterization doesn’t need to be done until the 1 year mark which is July-August if she has not had the transplant by then.

Today (Tuesday) we met with the Psychologist and his office did a series of tests on Kendall(4 hours) for memory, comprehension, math, reading etc….Damon and I also had to fill out some papers that asked a lot of questions about Kendall’s mood, friendships, independence, comprehension, tasks, memory etc…OMG

It was eye opening to see how much we had to answer “never or don’t know” to because we help her so much with every task that we don’t really know what areas she is strong in because everytime we see her struggling with something we don’t give her enough time to figure it out or ask us for help before we jump in and help. She is accustomed to us doing it all so of course she is going to sit back and let us do it. I would too. We tell her what subjects are on the calendar everyday for school, basically do her chores for her, read her homework and lessons to her, etc…and haven’t stepped back enough to see if she can figure all of this stuff out on her own. Her school calendar is planned by us, clothes picked out, toothpaste squeezed for her(there are too many other things to name). I realize that she is now a teenager and it is beyond time to make her be more independent and think for herself so that she can one day live on her own. Stepping back is so hard and friend Deb Young is going to have to help me with this!!!!!

This appointment was really eye opening to us. When Damon and I were doing the questionnaire on what she does independently we were just looking at each other like “ummmmm” the only choices are never, always, or sometimes. There were no options that said ‘with assistance!!!’ Yikes

Lord help us lol I am a nurse/nurturer by nature so it’s difficult for me to see anyone struggling to do something, especially my own child. It’s still hard to believe she is not a baby anymore. Pray for me lol

Still waiting to here from Pittsburgh this week with a date for CT Scan

Next appointment is next week with the lung doctor in Detroit for a routine follow-up visit

(if there are typos, I’m sorry. I’m tired and I can’t spell check right now)

xoxoxoxoxoxoxoxoxoxo

Cewanda

#TeamKendallT

#HRHS

#BeKendallStrong

#hypoplasticrightheartsyndrome

Sunday May 15,2022

Good evening everyone. Just wanted to sign on with a brief update (hahahahahaha) I know It is never brief.

Kendall had another mental health therapy appointment via zoom to talk about her feelings and coping skills. Went well. She likes this person and feels comfortable talking to him.

On Thursday(12th) we got a chance to talk to our new transplant coordinator. She told us that it has been decided that since an MRI cannot be scheduled until July, the team recommended that Kendall have a CT Scan instead with contrast and mild sedation which will get her a sooner appointment than July. They said that the CT scan will still give them good information and a great view of all of her blood vessels. So they are confident that this will be just as good as the MRI results would have been. We should hear from them this week on a date to come to Pittsburgh for this test and have a consultation with ENT while she is there.

This past Friday(13th) we had a virtual family zoom which went very well. The Child Life Specialist and Psychologist were on and they talked about everything from A-Z from what a healthy heart looks like and how it functions— to what Kendall’s heart looks like and how it is functioning. Sydney and Quentin had their own set of questions that they were able to ask and get clarification on. I was so proud of them. I mean I know that they are brilliant superstars, but their questions amazed me and I wanted to cry. The psychologist made herself available to them if they ever need to talk to her or are unclear on anything which was very much appreciated. The psychologist even took the time to talk to Quentin specifically on Neuro Psychology because she knows that is what he wants to major in after high school.

There will be more updates coming this week. Tomorrow Kendall has an appointment with her cardiologist/ heart transplant team at Children’s Hospital in Detroit for a regular check up, ECHO and EKG.

She also has an appointment on Tuesday with the Neurologist. He will be giving her a series of cognitive tests that the psychologist/physical and occupational therapists in Pittsburgh want to have as a baseline pre and post transplant. (this is about a 3 hour test). Then we will head across the street to the pediatrician’s office to get her 2nd HPV vaccine(they wanted her to get this because it helps to prevent certain cancers after getting a donor heart).

Ok. Besides virtual school and these appointments I think that’s all I have to report for now. She’s happy, healthy, watching something on her IPad and listening to it via her Beats and laughing! Life if good. To be continued..

Thank you all for your t-shirt orders. You are the bomb.com

xoxoxoxoxoxoxoxoxoxoxo

#TeamKendallT

#heartwarrior

#BeKendallStrong

#hypoplasticrightheartsyndrome

#HRHS

May 9, 2022

Hello everyone. I can’t believe it has almost been a month since I last posted anything. Trust me it’s not because nothing has been happening. Kendall is fine. It’s me that has been busy making appointments, canceling appointments, faxing, scanning and talking to at least 15 different people between both hospitals, consultants, therapists etc…. Thank God Damon was in the military because I write notes and phone numbers on any paper that is closest to me and then later on I’m struggling and overwhelmed trying to find it or can’t remember which notes belong to which person I’ve been talking to. So I know he’s tired of hearing me complain and be frustrated everyday so he has helped big time by organizing everything into separate files on the computer and in the file cabinet. That has taken a big load off. Most of my overwhelm comes from taking good notes and being confident I have the information, but having no clue which notebook, email, sticky note or random piece of paper I wrote it on. He’s helping me get better with that. It’s a process but I can see progress.

Kendall has turned 13 since the last time I posted. She is doing well. Has a lot of appointments coming up. She is now having zoom sessions with a therapist so that she can talk about her feelings, concerns and emotions about the transplant. We are still waiting for her home PT/OT to start but we have been given different exercises to do with her in the meantime. She has an appointment with the neurologist, pulmonary, and cardiologist this month( all in Detroit).

We are still waiting for the MRI. I have been very upset and frustrated because there has been a lack of communication between many parties and now they are telling us they are booked up until July. Since Kendall wants to be sedated during the MRI, cardiac anesthesia only assists with MRIs on Tuesdays and they don’t have any openings until then. She is on a cancelation list though so if there is an opening sooner they will call us. Whenever it happens, we will drive so we can get an estimate of how long of a drive it will be when we have to go at other times. Our transplant coordinator has had minimal contact with us for the last few months so I spoke with the manager and voiced me frustrations so we have been assigned a new coordinator that we will get acquainted with this week.

Today she had another zoom meeting with the therapist and on Friday we will have a family conference via “hospital version of zoom” so that Quentin, Sydney and my mom are included and the cardiologist, child life specialist, and psychologist will explain to them what to expect from A-Z. This will give them a better understanding of what is going on pre-transplant, post-transplant and years to go. They will also the an opportunity to ask questions.

Thank each and everyone of you for hanging in there with us.

I will be advertising/promoting the “Beautifully Scarred” t-shirts very soon. Deb Kayga gave me a great Idea that Kendall’s support team should wear her t-shirt on the day of her transplant, whenever that day comes. and I love the idea. Knowing that no one is going to be there with us, we would love to see posts and photos of everyone wearing the shirt, praying for her/us, and supporting our family.

Love to all of you

Cewanda

xoxoxoxoxoxoxoxoxoxoxoxo

#TeamKendallT

#heartwarrior

#BeKendallStrong

#hypoplasticrightheartsyndrome

April 14, 2022

Greetings. So it looks like the heart catheter is no longer necessary since she had one last summer. If she has not had the transplant 1 yr from the last catheter, then she will get one at that time.

At the present time we are waiting to hear back from the hospital regarding the MRI(they said they are waiting on insurance to approve it). Which I totally don’t understand because when the transplant evaluation was approved the first time, any other tests associated with it should’ve been approved also (is what I was told).

So I have been back and forth on the phone every day with the insurance company and the transplant coordinator in Pittsburgh asking why there is a lack of communication between the two of them. So frustrating.!!! She will also have an ENT consult while she is there and an anesthesiologist will come to meet her when they give her medicine for the MRI.

Got her dental clearance last week so we can check that off the list(mouth has to be free of cavities and infections prior to surgery). If not, an infection in her mouth could cause a major infection in the body after transplant.

Yesterday we met her new adolescent pediatrician. (Her previous one retired that has know Kendall since day 1). She wasn’t affiliated with CHM but this new doctor is part of CHM so now at least everyone has access to the same records. She did receive 2 vaccines. I think I mentioned that in the last post that the infectious disease doctor wanted her to have them. The HPV vaccine to help prevent any cancer that could develop later from having a donor organ and the pneumonia vaccine to boost her immune system.

She did tell the doctor yesterday that she wanted to start talking to a therapist so they are setting that up for us.

Still waiting to hear from PT/OT and the neurology department so that she can get started with the recommendations per Pittsburgh.

So we will be making a trip back to Pittsburgh but dates are unknown right now but it should only be for a day or two when we do go.

It seems like I am forgetting to tell you something but I can’t remember right now. It may or may not come to me later. lol

xoxoxoxoxoxoxoxoxo

Cewanda

#TeamKendallT

#BeKendallStrong

#KendallsWholeHeart

Pittsburgh bound....Round 2

Hello hello hello!!! It’s been a couple of weeks since my last post. I was just waiting for more news to be able to give you.

Pittsburgh cardiac/lung coordinator called and said another expert was called in to look at everything before a final decision was made. The latest is, this particular doctor recommends Kendall have an MRI from head to toe with an iron-based contrast called(ferumoxytol). He says this will give them a more detailed picture of all of the blood flow. Also, this doctor is a specialist in iron MRI’s. He was part of a study that was done and is specialized in these type of MRIs. They don’t do them at a lot of pediatric hospitals. We checked to see if it was offered here at CHM but it is not so we will be traveling back to Pittsburgh to have it done.

Also while we are there, Kendall will have another heart catheter done(had one 6 months ago in Detroit but they want to do another one in Pittsburgh), also an ENT and anesthesiology consultation. Since she is going for the MRI she may as well meet all of the team during this visit.

That’s all I have for now. Don’t have a date yet. Will keep you updated.

xoxoxoxoxoxoxoxo

#TeamKendallT

#BeKendallStrong

#KendallsWholeHeart

Day 4. Final day of evaluations. March 17

1. Kendall started the day off bright and early with a 6 minute walk test to check her endurance, breathing and oxygen levels during this activity. (she wasn’t thrilled to do this because “it is too early to be walking that long” and she had already done this on Tuesday with PT/OT. “Why do I have to do this again? Can’t they just ask those other people how I did on Tuesday?” she said. Very valid point and very observant. She wants to make it make sense lol But the only answer I could give her is that it was a different doctor and this is the lung specialist who wants to do his own test because maybe your results are different from 2 days ago. I can’t find the rolling eye emoji but you get the picture of the responses i got!! Lol

2. Next she had a Pulmonary Function Test(PFT)- This is a test where she has to take deep breaths and blow into a machine several times to test her lung strength and capabilities. It gives you a certain number value that the lung doctor uses for his evaluation.

3. Supportive Care Consultation- We met with the director of this department and her job was to get to know us to find out what our physical, psychological, social, and spiritual needs are/will be. She assured Kendall that she would be asleep during the surgery and wouldn’t feel anything. Also helped her to understand that anytime someone has any type of surgery there is pain involved but her team would do everything they could to give her the best medications to manage her discomfort and they wouldn’t hesitate to try different things until they found something that worked best for her. She also encouraged me and Damon to get in contact with her and her staff personally if at anytime Kendall needed anything because she understand that pain interferes with the healing process.

4. More blood work

5. Met with Dr Zinn( cardiac transplant doctor) again for a recap of Monday when we met with him. This appointment was basically for us to get answers to any questions we had, clear up things we were unclear about, to make sure we had an understanding of the roles of each department we met with during the week and to sign consents if we wanted to proceed with the heart transplant. Based on everything we heard/saw up until that point of course we made the decision to proceed.

6. Pulmonology(Lung) consult- I am glad they saved this one for the end. Let me just say that we could tell this particular doctor was very brilliant, he knew everything there was to know about lungs, he told jokes and had Kendall at ease, very passionate about his profession and left us with no unanswered questions. However, there was a point in the conversation where I felt I was going to lose it. I just simply got up and sat in a chair behind Kendall so she couldn’t see my tears. The digital pictures of Kendall’s lungs and the explanation of what they looked like vs what “normal” ones looked like made me sick to my stomach. We were told that the right lung is functioning and the left one is not(which wasn’t new information) but it’s different when it has been told to you but never shown to you in that amount of detail. He said because her left lung is small, non-functioning and just kinda there taking up space, her diaphragm is paralyzed on that side because that lung is not making it go up and down when she breathes. If I remember correctly he said the left diaphragm was high up in her upper chest and the right side was moving as it should. He told us that the risks of rejection of a double lung transplant and infection were much higher than that of a heart. Successful lung transplants usually last 5-7 years at a time before you need another transplant. Heart transplants are much “easier and less risky than lungs” and when you are doing both at the same time it is very risky because of bleeding, infection. and organ rejection. My feeling was that he was leaning towards NOT recommending the lung transplant just based on the informational that was given. He wasn’t saying she didn’t need new lungs but what he was saying was that doing 2 major transplants at the same time should only be done if you have no other options. He said that people can survive on one functioning lung without having a transplant. The 2 other things he talked about was that there is no way of knowing that she may need a lung transplant in the future. But on the flip side, it is more ideal to get both organs from one donor vs doing a heart transplant now and having a totally different donor later on in life for lungs.

   It was overwhelming and a lot to process and think about. Neither doctor came out and said what their recommendations or thoughts were because of course they don’t want to give parents false hope or misinformation. The team gets together and talks amongst each other to come up with a plan instead of giving their personal opinions which is understandable.

   The team gets together on Tuesdays to discuss the upcoming transplant patients as I said in the first post at the beginning of the week. The transplant coordinator did call me on Tuesday evening and told me that they need one piece of information before they make their final decision. They need more information from the CT scan sent to them from Children’s Hospital in Detroit because it’s 2 vessels that they couldn’t see clearly on the tests that were sent to them. They needed more information from that scan because it was the another determining factor for their decision. From what I was told they should have this information this week and we can expect a call anytime from now and next Tuesday when they meet again.

   I didn’t plan on posting this much. If there are some typos or confusion it’s because my brain is tired and I can’t even proofread or explain anything any different right now because I am overloaded with information right now and I am still trying to processall of it. I am merely repeating what was said to us over the course of the week but we are still convinced that all the risks and negative things that were told to us was necessary so that we were informed, but we know those things won’t happen. Kendall will live and not die. She will have a long, fully functional and fulfilled life. She will continue to awe doctors and defy odds. We are fully convinced and confident in this. Kendall is strong and she is here to be living testimony to us and so many others. We simply have to trust and believe in a higher power and know that everything is happening when, where, and how it was designed to. We believe God loves us that much to make us witnesses to His power and miracles.

   xoxoxoxoxoxoxoxoxoxo

   This journey hasn’t been easy and we don’t understand it all. But the only thing that gets us through it is our faith, family, friends, prayers and the kindness of people who continue to show us love and support. (and the people that I can call to remind me of the things that I just said when I start to get overwhelmed, weary, or doubt).

   We love you all,

   Cewanda and Family

   #TeamKendallT

   #KendallsWholeHeart

   #BeKendallStrong

Wednesday's Evaluation (March 16)

This was an interesting day for a lack of better words

1. Started off this day at 6:30am for Radiology appointments. Kendall had an ultrasound of the abdomen(to look at all of the other organs in the belly area). She also had an ultrasound of the upper and lower extremities to look at all the vessels that run through the body from the neck and groin.(Kendall didn’t mind this part but she is very ticklish and she was very afraid that she would start laughing and farting). She will hopefully never know I said this but it is true(Sydney and Quentin don’t tell her). Please!!!

2. Consultation with cardiothoracic surgeon(Heart and lung). Listen. I was good. Cool, calm, collected and coasting through all of this prior to this appointment. I was seeing the benefits and very optimistic!! Then it happened. He said “she has had 5 surgeries in the same area. 4 scheduled and 1 emergency. There is a lot of scar tissue and it will take hours for us to even get to the heart. It is very risky and her risk of bleeding heavily is very concerning. I will have to put her on lifesaving machines while we wait to see if this will be successful.” I am not even going to lie. I felt like I was being told that this was a bad idea to proceed with the surgery and we needed to make sure this is something we wanted to proceed with. I literally felt sick to my stomach because up until now I knew the risks, but I always had hope. I still have hope. I still believe that she will get the absolute best heart without complications and none of those statistics apply to her. This is nothing new to us, we are just not of fan of all of these surgeries and everything that goes along with it but also thankful that there are options. Sometimes the delivery of news from doctor to family feels kind of brutal and harsh. I wanted to be angry at him but I appreciate honesty, experience and passion more than just telling us what we want to here. Gotta have some thick skin during this!!!!. As a nurse I had to think back at all the times I heard doctors give patients news that I wish they would have said differently, more gentle or with more compassion. I also know those were some of the most skilled, committed and competent doctors I have ever known and their skill outweighed their bedside manner any day. But I am human and not a robot without feelings, doubt, questions and concerns. So we made up in our minds that this is going to be successful because Kendall didn’t come all of this way for us to feel defeated and doubtful. Nope. The doctors have to give you the worst case scenarios but It is up to you/me to decide and believe that the opposite is true. We have come too far to turn back now. + the more positive and hopeful she sees me and her dad are consistently, the easier it is for her to believe everything is going to work out.

3. Psychology Consult- There is a God and He knew I needed to see this person at the end of this day!!! Awesome and much needed. This doctor absolutely helped us to see that the overwhelm we feel is normal. She got Kendall to open up about some of her feelings and fears. Also got to know Damon and I and reassure us that there will always be someone available for our mental needs as well. This was very important to me. I finally felt I could exhale and pour out how I was feeling about all of this, being in another state, no familiar resources/family, and trying to process this big life change/challenge. Not to mention my personal therapist told me she is retiring in May. WTH!!!! Lol

   We know we are surrounded by God and His angels that are assigned to us. Family, friends, villages, and a tribe of people who have our backs 24-7.

   xoxoxoxoxoxoxoxoxoxo

   The love we have for you is real

   Family of Kendall Todd]

   #KendallsWholeHeart

   #BeKendrallStrong

   #TeamKendallT

Post evaluation Day 2 (March 15th)

So these consultations were a week ago Tuesday.

1. Nutrition consult- Basically Kendall was told that she is not going to be forced to start eating things that she doesn’t like. She doesn’t like milk, eggs and most vegetables and it is ok with them as long as she eats what she likes, maintains her weight and gets enough protein to help her with strength and energy for rehab and physical therapy. Of course she was more than happy to hear this. She doesn’t have to drink milk, eat yogurt or eat eggs…They told her if she wanted to eat chicken fingers, fries and corn and pancakes for every meal it was ok with them. Needless to say she is looking forward to this part of the process. lol

2. Social Work consult- We were given resources to look into as far as lodging, parking, food, vehicle rentals(parking), prescriptions, fundraising, dental, air travel expenses etc…

3. Child Life Specialist- I cannot say enough about Laura. She got to know us and Kendall so quickly and was able to intervene and build trust with Kendall so quickly. She was there with Kendall for all of the blood draws which is the area that she has the most anxiety, fears and tears. Laura helped her with coping skills, distractions and boosted her confidence in ways that only a professional could do. She even gave us a tour of the Ronald McDonald House and stopped by to see Kendall on a regular basis just to check in on her to see how she was doing. She even gave her a stress ball to squeeze that really helped her to keep calm during other visits. II am going to get one for myself. I am so serious. Can someone say Amazon!!!) lol

4. Physical Medicine and Rehab consult- Wow. This appointment was with the doctor, occupational and physical therapist. They were phenomenal!!! Kendall did a 6 minute walk as part of the evaluation of her endurance pre-surgery. The occupational therapist did exercises with her especially on her left hand/arm where there has been weakness from the stroke. We saw her do things with that hand that we have never seen her do before. At home we would typically not push her beyond her limits when she said her hand hurt while doing certain things. The therapist pushed her and had her stretch her arm and turn her entire hand palm side up even when she resisted. Eye opener. Kids play on their parents sympathy. We decided that it hurt and she couldn’t do it and we were not going to push her but actually she can do it and we have to consistently make her exercise that hand/arm so that she can eventually do things that we thought she would not be able to. The doctor gave us a prescription/recommendation to start occupational therapy now prior to surgery to get strengthening in her arms/hands. They were pretty confident that she is stronger than we thought. We have noticed that since talking to them she is opening and closing her left hand more and stretching which she never did before. She would always keep her left fist balled up and we would have to remind her to open her hand during the day. She just needed encouragement and praise from another source and I am so glad they encouraged her. She will be opening caps, jars, zipping zippers, and buttoning clothes very soon!!!!!!

   Okay soooooo let’s add occupational therapy 2-3 times a week to our schedule

   xoxoxoxoxoxoxoxoxoxoxoxo

   Cewanda

   #BeKendallStrong

   #KendallsWholeHeart

   #TeamKendallT

Post evaluation Day 1

Hello hello hello. I know you are patiently awaiting the results of the transplant evaluation. There was a whole lot of information of course and I will do the best I can to summarize it all. The entire team that saw her will have a conference tomorrow and go over her case, make a decision, and let us know what they decided in regards to heart vs heart/lung transplant. I am going to make posts in the order/day that they happened so that this one post isn’t too much to read.

Day 1

!. Echocardiogram and EKG-According to the cardiologist it was the same as the one she had in Detroit. Nothing concerning, nothing that was critical or urgent for them to act on.

2. Infectious Disease- This doctor wanted to make sure all of Kendall’s vaccines were up to date. Also she was adamant on Kendall getting another pneumococcal vaccine and HPV vaccine. She said that when you have a transplant, blood transfusions etc..there is a type of cancer that can develop if Epstein-Barr virus develops. Of course there is very detailed screening from donors for viruses and anything that could cause the recipient to reject the new organ. So boosters from certain viruses are crucial to help prevent rejection from the new organ. We also talked about the importance of living our lives but also keeping in mind that any way we can decrease the possibility of Kendall catching anything from another person should be in place such as avoiding large crowds, wearing masks and good hand washing for at least the first year after transplant.

3. Transplant Coordinator Consult- This is my go to person, point of contact if I have any questions or need to reach one of the doctors. She’s the person that updates us and keeps us aware of what is going on.

4. Cardiology Transplant Consult- Met with the Transplant cardiologist Dr. Zinn. One of the reasons we chose Pittsburgh was because Dr. Zinn use to work at Children’s hospital in Detroit. He was there when Kendall was born up until she was 4 years old and he still keeps in contact with the current doctors she has now. Seeing a familiar face was reassuring and helped us build trust with the other members of the team. He received all of the records from Detroit and also did his own physical assessments. We discussed everything about what to expect prior to, during, immediately after transplant and future. (it’s a lot. Very overwhelming).

The entire team(everyone mentioned above + surgeon, pulmonologist, physcologist, physical medicine and rehab department) meets every Tuesday. So the plan is that they will meet tomorrow and discuss pros/cons of transplant and make a decision and let us know.

The thing is, we met all the specialist but they don’t let you know one way or another their opinion or decision until after they all get together to consult with each other. I can appreciate that because we want everyone to be on the same page and come up with the best course of action and treatment.

They meet with each other tomorrow but we may or may not hear from them until the end of the week or later if they want more testing done before they make a decision.

xoxoxoxoxoxoxoxoxo

Bear with me as I translate this past week to you. There is way more but I can’t tell it all but I am doing my best to give you the highlights.

Love to all of you

Cewanda

#BeKendallStrong

#TeamKendallT

#KendallsWholeHeart

Explanation and Understanding Is Key

According to Proverbs 19:8, wisdom is a way to love yourself.

New International Version
The one who gets wisdom loves life; the one who cherishes understanding will soon prosper.

Kendall had an appointment today at Children’s Hospital with the transplant team. She had an a EKG, ECHO and CT scan.

The team also sat down with her to answer any questions she had about what’s going on. They were very professional, caring and showed genuine love and concern as they explained things as simply as they could so that she had a better understanding. We received a few books to read with her that has definitions and meanings of what she hears but may not understand. They explained to her what being an organ donor means and how she is receiving a “gift” from another person so that she can feel better, stronger and live a more physical life without being as tired as she is now. She was happy about that.

Towards the end of the conversation, Kendall was asked how she felt about all of this and she said she was a little nervous. I really felt that at the end of the meeting she felt better because they talked to her about her feeling better and stronger and also reassuring her that they had many ways to minimize any pain she may have after the surgery and recovery period. Overall, it was a productive and much needed conversation so when we talk about it now, we can build on the understanding she has now. The team made themselves available to her by saying she could call or email them on her own if she has questions or needs to talk. That was a very sweet gesture and I am going to give her their information so that she knows they truly care about her and are willing to talk to her at any time.

xoxoxoxoxoxoxoxoxoxoxo

Cewanda

#TeamKendallT

#BeKendallStrong

#HeartWarrior

#KendallsWholeHeart

Things are moving along....

Proverbs 3:5-6 New Living Translation

5 Trust in the Lord with all your heart;
    do not depend on your own understanding.
6 Seek his will in all you do,
    and he will show you which path to take.

I don’t know where we would be if we did not trust in what this scripture is saying. We trust in Him because we don’t understand this at all but we know that God is in control and He has a plan and a purpose for all of our lives. All we have to do is trust and let Him do the rest. We have the easy part, trusting. (even though it doesn’t seem easy). But God is the one that does what seems impossible to us. He makes it possible. Our only job is to believe. He is the heavy loader bearer.

We are all set with our flight arrangements provided by Miracle Flights. We have a schedule of the day to day appointments with all of the specialists Kendall needs to see at UPMC-University of Pittsburgh Medical Center.

Before the trip, she has an appointment at Children’s Hospital in Detroit on March 7th with the transplant team. She will have an ultrasound of her heart, EKG, CT scan, and a child psychologist will talk to her to explain everything and the reasons she has to go to another hospital. After the final evaluation in Pittsburgh she will see another child psychologist to give her a better understanding of what needs to be done.

On a happier note she has an orthodontist appointment tomorrow and hopefully she will be done wearing the rubber bands(which will bring her pure joy) and should be getting her braces off very soon!!!

More updates to come as I receive them

Thanks for the prayers, listening ears, genuine concerns, and gifts (Justin and Jasmine Ibe. Deb and Jeff Young). Your thoughtfulness means the world to us.

Love you all

Cewanda and Family

xoxoxoxoxoxoxoxoxoxoxoxo

#heartwarriorKT

#TeamKendallT

#girlpower09

#HealedHeartKendall

#CongenitalRightsidedHeart

#PulmonaryAtresiaSubglotticStenosis

#KWH

#BeKendallStrong

February 16, 2022

This is the day that the Lord has made, we will be rejoice and be glad in it.

Let’s go Team!! I received a phone call from UPMC(Pittsburgh Children’s Hospital of Pittsburgh) yesterday. We got a date for the upcoming evaluation. We will be headed to Pittsburgh in March. I have so many positive things to report.

1. We qualify for Miracle Flights which is an organization/company that provides flights at no cost to the patient and parents of a child that is traveling for medical appointments. They also told me that if we had not qualified based on income, we would qualify because Damon is a Veteran. They try to accomodate military families as a way of saying thank you for your service. I had no idea this organization existed until my good friend Karly Bignotti-Cooks. I am so grateful to have people in my life that help take the load off of such a tough time.

2. Our plan is to stay at RMH near the hospital. They are all individual apartments so it’s convenient right now during this pandemic. We can have our own private space. Purchase our own food etc…I always find a store whenever we travel to get cleaning products(even before the pandemic). Lysol, air fresheners, clorox wipes, disinfectants!! The room and the beds will be disinfected wherever my family lays their heads. I know that was way off of the topic but it’s true. Is it just me or do other people do this too?

3. Today Kendall has started asking questions for the first time about why we are going to Pittsburgh, why does she have to see another heart doctor when she already has one, why we have to travel to another state etc….I explained to her as best I could on a very superficial level, not too much information because I definitely want this conversation to be with professionals who can explain it to her on a 12 year old level. So I contacted the transplant team at Children’s Hospital in Detroit so we can set up some sessions for these conversations.

4. Thank you Deb Young for always being my sounding board and voice of reason because you have been there. I appreciate and love you so much!!

It’s amazing that we kept wondering when this evaluation was going to take place. Almost antsy because we were told she needed a transplant months ago but I refused to rush the process and call everyday and ask what’s going on. Now that the call was made to us and appointments have been set, it feels surreal. Like ok it’s starting. The process is in motion. Our lives are about to change for real for real. I am so excited for the day she will say she feels better, breathes easier, is less tired and has more energy. She doesn’t even realize that she will be able to do things easier and with less effort because all that she knows is how she has been feeling for 12 years. This is normal to her. I’m teary right now just thinking about it but it is going to be the best day ever to witness her brand new firsts without being short of breath and having to stop to take breaks. Words cannot explain the joy, love, hope and excitement we feel.

It has been a long journey as you know because it has been your journey too. Thank you for hanging in there with us, praying for us, and any acts of kindness you have shown to make this journey more bearable.

Continue to keep Kendall and our family in your prayers. She has come so far, beat so many setbacks and obstacles. The story continues……

Love you all

Cewanda

#organdonation

#transplantssavelives

#heartwarriorKT

#TeamKendallT

#girlpower09

#HealedHeartKendall

#CongenitalRightsidedHeart

#PulmonaryAtresiaSubglotticStenosis

#KWH

#BeKendallStrong

January 26, 2022

Hey there. Can you believe January is almost over?? I’m not usually the person that says “this month or year is flying by” because I like to just take it day by day but because we are waiting on phone calls, approvals and answers, it seems like time is going by way too fast because I am concentrating on the days to come and anticipating “the call.”

But anywho(I don’t think that’s a word) we are grateful that nothing is rushed. Everyone that will be a part of this process/ team is being assembled and perfected by God and His timing is perfect so we cannot be anxious about when it will happen.

I heard from the primary insurance company(again) last week that everything related to tests, surgery, hospitalization, transplant etc…has been authorized and covered. Kendall also has had a secondary medical insurance since birth for additional coverage. I was informed by the coordinator at Pittsburgh Children’s Hospital that the last thing they were waiting for was medical information from Kendall’s pediatrician to the secondary insurance company. They received the information that they needed from the pediatrician late this past Friday so we should be contacted soon for an appointment. I know I keep saying that. I had been really anxious and upset that it was taking so long but now I am just being patient with the process because once everything gets in motion, it’s on. So this waiting period is being cherished, celebrated and not taken for granted. All is well.

Jeremiah 33:6 - God brings healing

Nevertheless, I will bring health and healing to it; I will heal my people and will let them enjoy abundant peace and security.

xoxoxoxoxoxoxoxoxoxoxo

Cewanda

#heartwarriorKT

#TeamKendallT

#girlpower09

#HealedHeartKendall

#CongenitalRightsidedHeart

#PulmonaryAtresiaSubglotticStenosis

#KWH

#BeKendallStrong