Keep advocating for your loved one until someone listens and takes you seriously

Kendall had a trip to ER early Sunday morning. She was having cold-like symptoms( stuffy nose, runny nose, sore throat, head congestion, cough). Congestion to the point where she couldn’t blow her nose and couldn’t breathe through her nose at all and could only mouth breathe. I checked her oxygen level and it was like 83-84%.(her normal is high 80s low 90s). With everything that has been going on with her I took her to Children’s Hospital where all of her doctors practice out of. I can’t even explain the irritation frustration I had/have because of the care that she received. I explained the current situation with heart/lung because of what could happen if she was sick at this time.

Recap: She had pneumonia last year at the beginning of 2020 and was finally admitted after the 2nd ER visit in 24hrs. She was very sick.

Sunday she had a chest xray done and the radiologist said it was “possible” pneumonia but the ER doctor disagreed. They said it was a viral upper respiratory infection and it had to run its course. All they would give her was some nasal spray and told me to get a freaking nedi pot to use at home. Then she was discharged home.

Because no other tests were done(and no one was taking me serious) i could not wait for the sun to come up so that I could call her pulmonologist. I told her what was going on and that they would not do any other tests that I requested because of her history. The Dr agreed with me and ordered antibiotics to treat her for possible pneumonia to be on the safe side. She had a fever on Sunday but nothing since then. We increased the vest therapy to 4 times a day(a machine that has a vest she wears and it pretty much shakes her chest and back to loosen up secretions). She is using 1 inhaler 2X a day and another inhaler 4X a day. Monday-She is feeling much better and congestion is 90% better.

#TeamKendall

#KendallStrong

#CHD

#HRHS

#HeartWarrior

Rheumatology appointment

Yet another doctor’s appointment completed. As I mentioned in the last post this appointment was made months ago because over the last few years (more so in the last few months), Kendall’s right hand would be red/hot and the left one would be blue/cold at the same time. So the doctor she saw today did a lot of blood work that could confirm or rule out some causes of why this is happening. A few scenarios he gave us was arthritis, lupus, autoimmune diseases. Based on his physical assessment he said he didn’t think it was any of those things and that it is probably happening because of her circulation issues. So off to the lab we went. They couldn’t get her blood drawn (they even tried in her foot for the first time). We were at the Specialty Center across the street from the hospital so they called over one of the IV team RN’s to come over to draw the blood. Wasn’t easy but he got it thank God.

I think the only thing she looks forward to now is getting to go to Krispy Kreme on the way home from her appointments. She deserves it that’s for sure.

Cewanda

#KendallsVillage

#TeamKendall

#CHDWarrior

#HRHS

#KendallStrong

#MiracleWorkingGod

Good News

Kendall does not new a liver transplant!!! The doctor said all of her blood work was in a normal range. He said that based on the ultrasound her liver is “ not normal.” But……her liver is stiff and has a lot of scar tissue in it and the blood that flows to the liver is backing up. However, that’s not a good enough reason to have a transplant in his opinion. He was really optimistic and hopeful that a new heart will correct all of this.

There is another appointment this week on Tuesday with a rheumatoid doctor. This has nothing to do with the transplant team. This was an appointment that was made in June due to fact that Kendall’s hands and feet are sometimes red and warm or blue and cold, sometimes at the same time. It very well could be happening because of her circulation issues because of the heart condition but we just want to know for sure. Hey, what’s one more doctor at this point!! Let’s rule everything out right?

Haven’t heard with the lung specialist this past week so we will hopefully hear from the team this week with a plan.

More updates coming this week so stay tuned

Cewanda

#KendallsVillage

#TeamKendall

#CHDWarrior

#HRHS

#KendallStrong

#MiracleWorkingGod

Team Kendall Let's Go!!!!

Hello everyone. Kendall had her appointment with the lung doctor on Wednesday. Long story short, based on the chest xray results and tests the doctor did that day, she is not convinced that Kendall needs a lung transplant but she is also not convinced that she doesn’t. Her recommendation is for Kendall to be evaluated by the physician that actually does the transplants which would be in Pittsburgh. She said if she had to make a decision just from a lung standpoint she could do that but because the heart is involved she would feel more comfortable that the facility that specializes in heart/lung do their own assessment. We appreciate that because this is a major decision and we want the the decision to be made with the best team that she can have. She is going to make the phone calls and send over the reports from Children’s Hospital in Detroit to the Children’s Hospital in Pittsburgh. We will know more this week about when that appointment will be.

The hematology appointment was on Thursday. Last months results and last weeks results were pretty much the same. There were some values that were high but she said it is nothing to be concerned about because it is “expected” to be high because of what is going on now. She even said Kendall doesn’t need to see her until next year unless any issues come up. That was good to hear. She even drew all of the blood work the liver doctor will need this week so she won’t have to be poked again!!!! The only vein they could find was in between 2 of the knuckles on her hand.

So this week is the liver ultrasound on Tuesday and the appointment with the specialist on Friday.

I don’t know why I said “long story short” in the beginning of this update. I tried but it’s a lot to say and believe me this is the short version. lol

Thank you all for your encouraging words, prayers and being our cheerleaders through it all.

Cewanda

#KendallsVillage

#TeamKendall

#CHDWarrior

#HRHS

#KendallStrong

#MiracleWorkingGod

Consultations

We have confirmed dates for the 2 consultations/evaluations next week. We will see the lung specialist on Wednesday Oct 6th and liver specialist on Thursday. Oct 7th in additional to the regular scheduled hematologist appointment. Kendall is feeling really good. No complaints of anything. Correction, no complaints of anything health related. lol

That’s all I have to share for now

Cewanda

#TeamKendall

#CHDWarrior

#HRHS

#KendallStrong

Insurance Approval

So today we got word from the cardiology department that our medical insurance company has approved the start of the process. Consultations, recommendations, evaluations, blood work and tests will be ordered by the specialists on the team. First appointments are next Thursday October 7th. One of the appointments is with the hematologist that she has been seeing for anemia and low blood clotting factors.

The other appointment is with the liver specialist. This will be our first time meeting him. I’m quite sure he has a ton of blood work that he needs to see results of before he makes his final recommendation but we are very eager to hear what he has to say.

Cardiology already told me that they will coordinate all of her blood work that needs to be done between the two doctors. One office will order everything that they both need so that she is not poked multiple times.

She has very difficult veins and is usually always poked multiple times to get what they need. She cries, sweats, and holds her breath which leads to her turn blue just from blood draws. She is so strong and is so used to going to Children’s Hospital for her doctors appointments and she is fine with that. But once she knows she has to have her blood drawn she loses it. Because I know that she is going to have a ton of things done to her that is brand new to her, I already put in a request to have someone from anesthesia come to the clinic to draw her blood so we can eliminate her anxieties and fears. What I have to be right now is her advocate. Anything that will minimize her fears and help her get through ALL of this without being mentally traumatized, that’s what we will do. Whew. Things are moving along now. God is putting the team together. His absolute best team of the most talented, experienced, anointed, passionate, and wise men and women specifically for Kendall Todd.

#TeamKendall

#KendallStrong

#CHD

#HRHS

Reflections

Nothing new to report. Just up thinking about the past, present and future…Monday nights have been our “Girls Night” for a few years now. That’s the night where I sleep in Kendall’s bed and we have honey cheese puffs and some form of chocolate a few hours before bed (hey, no judgement lol). Sometimes I creep out of her bed and head back into my room where the bed is much more comfortable. Tonight however, she’s like a toddler and grabs my arm when she feels me move. So I am still here just staring at her and remembering all of the things she has gone through and I am so proud and grateful to be her mom.

She gives me a hard time every day with that pre-teen attitude and sassy mouth. Has to have the last word. Mad at me because Friday they added rubber bands to her braces and somehow it is my fault that I don’t know how to put them in as good as the dentist and I make her mouth hurt and she needs “drugs” (her words).. lol

Thinking about how her left dimple is much more noticeable than the right one. How everytime I start to ask a question to her/or anyone else she answers “I don’t know/we don’t know” after I get out the first 3 words of the question. Every morning when I wake her up she yells “you got to be kidding me!!” She is definitely not a morning person just like me.

Ok I am done rambling for 12:30am…………..

FYI: We have not heard back from the hospital yet regarding insurance clearance to proceed with consultations.

Cewanda

Kendall's Whole Heart

Hello everyone. I hope you are all well.  I know you have been waiting on updates.

-Kendalls heart condition is starting to affect her liver and her lung so a heart transplant is highly recommended. She is in “heart failure” and so she is going on the transplant list. When I heard “heart failure” I immediately thought that she was worse than we thought. But they explained to us they use those words for most patients that have a heart that isn’t functioning the way that it is supposed to. They said that from their standpoint they have considered her a “heart failure” patient since she was a baby because of the heart defect she was born with. That was our first time hearing them use those particular words. Even though it was hard to hear those words, I am glad it is nothing new, just new to us.

-cardiologist is setting up conferences with other specialists to get their opinion if she needs a lung and liver transplant too. Dr said if we continue to give medications and not do the transplant, her heart will stop functioning in 1- 1 1/2 years. After that was stated there is no way we would not agree to the heart transplant.

-if she needs a heart heart transplant only, surgery can be done at Children’s Hospital in Detroit 

-if she needs the other organs too, they only perform the surgeries in a few other states so we would have to relocate there temporarily because you only have a few hours to get to the hospital once the organ(s) become available.

-basically right now we are waiting to hear that the insurance will approve everything that is needed. After that we will meet with the liver and lung specialists so that they can do their own tests and evaluations. If they decide that her current lung and liver will get better just by getting a new heart and better blood flow, then she will only have the heart transplant.

She is not critical so she does not need to be in the hospital. She is still doing everything she was actively doing before. Only difference now is she gets tired more easily and short of breath. 

For all of these years my hopes and prayers were that this heart would function and be “good enough” to keep her healthy so that she could function and have a good quality of life every single day. My fears about a transplant were about rejection, infection, the surgery itself and all of the negative things that come along with it. (It’s the nurse in me. We know more about the things that parents/patients don’t know. Sometimes it’s good to know, sometimes you know too much). Now that she is starting to have symptoms, my new hope and prayer is that she will get a brand new, fully functioning heart, no defects, that is perfect for her. That she will thrive and feel better than she has ever felt in her life. Her entire journey from the beginning has led up to this moment. All of the surgeries, miracles, and scars have had a purpose. I hope her story has changed your life in some way and thank you for your love and support along the way. Her journey continues……..God has a plan and we are confident that He knows best.

I have always pictured her heart as whole(with 4 chambers) even when I look at the ultrasound pictures that always shows 3 chambers. Now I know why I chose the name “Kendall’s Whole Heart” way back then. Makes perfect sense now!!!!

Of course we are soliciting your prayers for faith, hope, peace, and miracles. 

Also for our family’s mental, emotional, physical, and spiritual state to endure through the process. It's a mountain to us but not too big for God ❤️❤️

Cewanda

xoxoxoxoxoxoxoxoxoxoxo

September 13, 2021 (Copy)

Good evening everyone!!! I know you have all been anxiously awaiting the results of the consultation from the heart transplant specialist last week. Believe me, every day I have wanted to post a little something. The truth is, we received a lot of life changing information that I am still trying to process and speak about with everyone in my own time. This Thursday we have another appointment scheduled in the cardiologist office and I will absolutely update you at that point. Thank you all for hanging in there with us. We absolutely could not have gotten through all of these years without your love and support. It hasn’t been easy but she(Kendall) certainly has been worth the journey.

#TeamKendall

#KendallStrong

#CHD

September 9th appointment

There was a scheduled appointment with the hematologist tomorrow but that has been rescheduled until next month (Kendall’s glad that she doesn’t have to get any blood work done of course) lol

The consultation appointment with the heart transplant doctor is at 1:00pm at Children’s Hospital in Detroit..

Positivity prayers and thoughts are welcomed

#TeamKendall

#KendallStrong

#HeartWarrior

2 appointments this week

On Monday Kendall had her annual pediatric checkup as she does every year at this time. I had them check her pulse ox (oxygen level) just as an FYI and it was 84-89%. Very similar to what it was before she left the hospital. Hers typically runs high 80s-low 90s.

Today (Wednesday) Kendall had an appointment with her GI doctor to go over the ultrasound report of her abdomen that they did while she was in the hospital last week. The doctor said that her liver is slightly larger than it should be. She said the the increased pressures she has from her heart/lung can cause this but the flow looks normal in that area. She wants to do a scope on Kendall to look at her esophagus. She stated that there may be collateral veins in the esophagus that she would have to put a “band” around to decrease the flow and help keep her liver from getting any bigger. She is going to call the cardiologist tomorrow to ask when she can schedule a scope and also to coordinate it at the same time as another procedure so she only has to have anesthesia once.

About 30 minutes ago the hematologist called to say Kendall’s blood clotting factors are low and if she has any bleeding from anywhere in her body to bring her to the emergency room.

God heals….

Cewanda

#KendallStrong #TeamKendall Updates

Last week I let you know that Kendall was having a cardiac catheterization on August 10th and I wanted to let everyone know the results of the procedure.

I am repeating back to you what was told to us by the doctors and medical staff. Doesn’t mean we have lost all faith and hope, because we have not. We still believe that because she is a survivor, a warrior and a miracle already, we expect miracles in every situation for her . She is older and stronger and everything will always work out in her favor because they always have.

I can’t and won’t accept any other news as the final answer because we are believing God for His continued miracles and healing in her life.

Recap: Because there is a 3 chamber heart instead of 4, there is no blood flow to the left lung which in turn causes that lung not to grow. Physically the left lung has not grown since birth because there is no blood flow to it. She is considered to have one functioning lung(right lung) instead of 2.

With that said these are the latest doctor reports/findings:

-Kendall has pulmonary hypertension. Basically that is a type of blood pressure that affects the arteries in the lungs and the heart. The normal pressure in her arteries should be less than 14 and Kendall’s is 20-21.

-The higher pressures causes the body to make new vessels on called “collateral” vessels. The body does not need or tolerate these extra vessels.

-The doctor was able to put a coil in one of these collaterals to stop blood from going through it so that it will travel back through the vessels that it needs to. We don’t want her blood to supply to go to any other vessels except for the ones that she needs it to.

-Since the coil was placed and her pressures were high she ended up being admitted overnight for observation in the pediatric ICU at Children’s Hospital of Michigan in Detroit and received 3 doses of antibiotics

-While at the hospital she had an abdominal ultrasound and her liver was slightly enlarged(nothing to do but to monitor it over time). They said it was a normal finding that they see with everything that’s going on with her heart and lungs

-the chest x-ray showed fluid in right lung. She got one dose of a diuretic to help release some of the fluid. At home she has a device(vest) that she wears two times a day that basically shakes/squeezes her chest and back so that the fluid can clear out of her lungs

-started on medication to help bring her pressures down to a normal range and keep them stable. The medication will be taken at home 3 times a day

-Her cardiologist set up an appointment to meet with the heart transplant specialist on September 9th. The reason is because Kendall is having symptoms( low oxygen levels, tired, shortness of breath with activity, and having to restart on cardiac medication). She is not in heart failure but needs further evaluation and recommendations on long term care, medications, treatment etc…

Thank you all so much for your concern, prayers and continued support through it all.

I will be more committed to updating you more often. I hesitate sometimes because in my mind I know people have their own lives, family situations etc….but I have come to realize that most people genuinely care and want to know what is happening on a more frequent basis. More importantly than that, talking about this is therapy and it helps us feel supported. Also these updates may help those who are reading this boost their own hope, faith and belief that miracles can and will happen in their own lives and situations too.

Keep the faith

Cewanda

The journey towards 7th Grade and beyond...........

It is hard to believe 6th grade has ended and 7th grade is about to begin!!! Unbelievable. Health-wise Kendall had an amazing 2020-2021. I know it is mostly because school was virtual and she was home 99% of the time due to Covid-19. She literally didn’t go anywhere besides doctors/dentists appointments and grandma’s house until recently. Some may say that’s extreme but she remained healthy with absolutely no issues for 14 months so it was worth it to us!!!!

Since June we have started to notice that she has become more tired and short of breath during and after activity. Oxygen saturations have been lower than they have been in the past. Kendall of course remains a trooper. Other than taking breaks to rest and catch her breath, she doesn’t complain about it. She’s not in distress or anything like that and has no restrictions or anything. She has had appointments with the cardiologist, pulmonologist and hematologist(heart, lung, blood doctors) over the past 2 months and it has been recommended that she have a heart catheter procedure on August 10th 2021. Her cardiologist wants to get a better look and and find out more specific information about her heart function and blood vessels.

The cardiologist stated that the last heart catheterization was in 2013 and at that time it was noted that Kendall would need a follow-up one within 10 years. It has been exactly 9 years since the last one so she is in that window of time to get a re-check.

This is NOT open heart surgery thank God. It is a procedure that many people have that have any issues with their heart and the majority of the time it is outpatient and you go home the same day.

We are faithful and confident in the fact the she is older, healthier and stronger than ever before. This procedure will provide information as to how to get her oxygen levels up so that she has more energy, breathes easier, and feels better and better everyday.

Thank you all for your continued support and prayers

#TeamKendall

#KendallStrong

There is a reason……..Stay tuned

This has not been information for your entertainment only. I swear to you I have a purpose in keeping you informed of why Kendall Todds’ life has been so transformormational to myself and others. God sometimes reveals himself through children. Their existence, birth and lives are to remind us why we were created. To love, live, believe, survive and know that we are designed and created to WIN!!

Kendall's journey is being spread to the masses

I had the most awesome interviews this week. First one was on Monday March 8th with Kingdom Mogul Coach Jesse Cole and on Friday March 11th with Charmaine Johnson-Fuller of The Charmed Life. Both interviews were phenomenal and encouraging to me as to why I wanted to share our journey in the first place. I am so thankful that there are platforms that I am connected with to assist me in reaching the people that would benefit from hearing a story of miracles, transformation and defying the odds.

Valentine's Day 20% off sale

Thank you to everyone for a successful promo 1 day sale yesterday. We look forward to having more of these pop-up sales throughout the year. We will surely keep you in mind and keep you posted.

Thank You

I wanted to thank each and every one of you for continuing to support us in all the ways that you have. Just knowing we have so many people who genuinely care about Kendall and our family means more than you will ever know. Kendall is doing so good. Growing up fast and excelling in all of her classes. I also want to thank you for purchasing our books, t-shirts and for spreading the word about our story.

2020 has made us stronger

I hope everyone had a blessed holiday season. In spite of all the things that happened in 2020, we have so much to be grateful for. I know for our family even though there were losses of people we loved, social isolation, virtual education etc…we are so grateful to be healthy, alive and well. We have spent a lot of family time together which we probably would not have if it wasn’t for Covid-19. One day we will be able to look back on 2020 and see all of the blessings we had as a result of the pandemic. I am looking forward to being even more persistent to present our story to those who need to here it. We are on a mission to speak hope, faith and encouragement into your lives. Do not cover your scars for they tell a story. Your scars will give others hope for survival and healing. You are Not Alone in anything you go through. Even if you feel alone or are physically alone, God is always right there. He will will guide you as you go through your storm.

Purpose Driven

It has really been a good week after the preorders started. I have actually heard from quite a few people that either have or know someone with a cardiac defect. I am also getting a lot of support from people who have no connection to heart defects but are simply purchasing books to support us!! This outpour of love and support has me happy AND crying tears of joy. My goal is to bring more awareness to this condition but more importantly allow our story/journey to be seen/heard to give others hope, faith, to believe in miracles and also know that you are surrounded by people who will help support you through the hard times. There is never a situation in your life that you have to go through alone. It took me years to figure this out. Now that I have released control of trying to figure everything out myself, I can now speak the truth to those who are where I used to be. My pain has fueled my purpose and I am humbled to be able to share our story.

Let me introduce you to "Never Alone"

I am so excited to release my third book “Never Alone.” The purpose of this 30-day devotional is to provide encouragement, motivation, affirmation, support and boost your faith. What God has done for us, He will do the same thing in your life if you believe He will do it. Sometimes we let our roles in life define us. These roles do not tell the story of who you are, but what you do. You are triumphant, victorious, chosen and well equipped for the journey that has been given to you. “Never Alone” will praise, uplift, inspire, encourage and uplift you. You are not alone, you matter, you are loved, you are strong, and you have exactly what it takes to be victorious.