Week 1 August 28, 2024

What a difference 7 days can make. There is a lot that I will leave out but I will give you the main points.

PICC line was placed successfully but afterwards her blood pressures were very low so she had to stay in recovery a little longer. They think it was a combination of the Milrinone, Sildenafil, and the IV sedation she received during the procedure. After a few hours she was cleared to return to her room.

-Heparin(prevents clots) was started. They increased her Milrinone and then her status was upgraded and changed to 1A which is high priority on transplant list.

-iron levels became low. 2 blood transfusions were given. and also Iron IV. GI consultation done to figure out if there was any internal bleeding before they would consider even doing a transplant for safety reasons. . Decision was made to do an upper GI scope.

-cardiologist put transplant on hold status until further tests done(she will not lose any time that she has accrued.

-scope was done yesterday and there were no signs of bleeding. There were a few areas of irritation so IV acid reflux medication was started.

—iron levels improving. Getting Physical and Occupational therapy. Music therapy(just had her heartbeat recorded and they will put it on a flash drive and inside of a stuffed animal. I love that.

-Heparin off. Getting Aspirin instead.

She is in very good spirits. Feels great. Been walking in the hallway. Currently with PT in the gym. Has been praying, coloring, playing nintendo switch, crossword puzzles, word search, Ipad etc…there is always something to do here. The educator stopped by today and is going to be available to help with lessons if needed once virtual learning has started.

Definitely had some setbacks but she had more WINS!!! Everything is happening in the order it is supposed to so her body is more prepared when the transplant actually happens.

God is good

Thank you again for your continued support and prayers. Keep it coming…..

#TeamKendall

#BeKendallStrong

Admitted 8/21/24

Just wanted to make a brief update. Kendall got admitted yesterday but it wasn’t until late evening. Since it was late nothing much happened besides answering admission questions, getting an IV and getting blood drawn. By the time all of those things happened it was 1::00 am and we were exhausted and went to sleep.

Today we met tons of cardiologists, respiratory therapists, child life specialist, psychologist, etc….They are so top notch here. Always checking in to see if we need anything, always accessible. We are very pleased about the staff. They work as a team and I can tell that they love their profession and it’s not just a job to them. I’m grateful!!!

IV medication was started about 5hrs ago. She’s a little tired today but other than that she has been eating, laughing, talking, playing Nintendo switch and now she is painting with Sydney.

Tomorrow they will take her and put in a PICC line and start running her medication through that. She will have mild sedation during the procedure and will come back to her room after recovery time.

I just wanted to let you know she was here and the process has started. I am journaling everything so I don’t forget anything because there is a lot going on. I am not going to give updates every day. Maybe once a week. Continue to pray for Kendall and our family and know that we are in good hands. Wear your shirts any day you please and I will let you know if there are specific days we need you to wear them based on what is going on.

As always, thank you for your support for #TeamKendall #BeKendallStrong

Love

The Todd Family

Updates.....

Hello everyone. Wanted to get you caught up with what’s coming up. Now that we have granted Kendall’s wishes of a short family trip, a karaoke party, golfing, and a family/friend get together that was held this weekend, Thank you to everyone that came over and made the day special for her. Her 2 uncles even came from Texas!! We had a great turnout and there was a lot of love and laughter.

it is now time for her to be admitted into Mott’s Hospital. The date of admission will be Wednesday August 21st if they have a bed available for her. If there is no bed available on Wednesday, she will wait at home until there is one for her. She has had such much fun and joy this Summer and it was so good to witness it. She is in very good spirits and calm like she always is.

On the first day of admission she will get a PICC line (lasts longer than a regular IV, they can give her medications, fluids, and draw blood from there. It’s a good thing to have so that she won’t have to get poked for bloodwork to be drawn. I know they will start a medication called Milrinone. It is used to help support her heart function while she is waiting for the transplant. Once we get there we will find out what her day to day schedule will be for online school, physical and occupational therapy.

Thank you to everyone who has given Kendall gifts that she can use while she is in the hospital. She loves them all and we really appreciate your thoughtfulness.

Also thank you for the cashapps and gift cards for food/gas etc….We are so grateful fo all of you that continue to support us and are on this journey with us. Thank you for always having our backs!!!!

#TeamKendall

#BeKendallStrong

PS Whenever we find out an official date wear your shirts if you can. I just shipped a few out today so I don’t know if you will have them by Wednesday. But it doesn’t matter because I know you will have them on at different times throughout her hospital stay.

We love you all

June 24, 2024 More updates

Hope all is well with everyone. In the last post I said that I would share the updates in parts so here is

Part 2

After we got the green light from U of M Motts there was a few scenarios presented to us to think about and decide on. 1) Keep the dual listing with Pittsburgh and we would go to which ever hospital received the heart first. or 2) Stay with U of M only. They want her to get physically stronger before transplant to minimize any complications. They would list her in a higher category which means she would go into the hospital to get therapy, rehab, nutrition, etc…This is not outpatient. She would be admitted into the hospital and start therapies and remain there until she gets her gift of a heart. After the transplant she would stay in the hospital for at least another month or two.

Initially the reasons for wanting her to be listed at 2 facilities is because I am having some medical challenges that I am overcoming and also because we wanted to be closer to our support group.

We were in a dilemma because we love UPMC hospital/transplant team and we very comfortable with them. They also transplant heart and lung if necessary. But we would be much further from Michigan and it would just be Damon and I. On the other hand, the other dilemma is if we yes to U of M that means she goes into the hospital for ???????months. We would be traveling back and for to Ann Arbor taking turns to make sure someone was always with her.

This will of course be life changing for all of us no matter what choice we make.

So we have prayed about it. Thought about the pros and cons. Included Kendall in on the choices and we came to a decision…………Stay tuned

April 2, 2024

Good afternoon. I hope everyone is doing well. I just wanted to let you know about the upcoming appointments this week:

Wednesday consultations: Psychologist, Surgeon, and Dietician

Thursday consultation: ENT

She has an MRI scheduled in a few weeks and needs to have that done before they will make their decision on whether or not she can be listed at U of M.

She is doing well and has a 15th birthday coming up soon!!

#TeamKendall

March 19, 2024

Good afternoon. Wanted to give a recap of yesterday’s heart catheterization procedure.

The procedure itself went well. ENT was unable to come and evaluate her because of their schedule so she will have to see them on another visit.

They didn’t give her a lot of IV fluids during the procedure so between all the blood work they did and the sedation medication, she had a hard time coming out of the sedation. She was very groggy for several hours and her blood pressure was low so we stayed until those things started getting better. They gave her some fluids and as she started waking up more she was able to drink water and ginger ale. Blood pressures were still a little low but stable enough to go home.

When we were getting out of the car at home she said her foot hurt. Once we got settled I took her sock off. Would you tell me why her baby toe is swollen on the same side they put the groin catheter in??? Also the nail looked brown/reddish. I asked her when did it start hurting and she said at the hospital but she was too sleepy to mention it.

So we gave her tylenol, put some ice on it and decided to check it this morning to see how it looked.

This morning it’s still swollen but less than yesterday. Hurts a little when she walks but not as much as yesterday. It almost looks like she bumped into something with her toe and its swollen from that. She said she doesn’t remember bumping it or hitting it on something recently.

So…..I called the cardiac unit to talk to the nurse about it and she had me send some pictures through the patient portal so the doctor could take a look and give some recommendations. Now I am just waiting for a phone call back.

Other than that she is doing fine. Virtual school is in session and its Algebra!! Lord help lol

That’s all I got for now. Have a great day

#TeamKendall

March 12, 2024

Good afternoon. Happy Tuesday. Just wanted to briefly let you know what is going on this week/next week.

  1. Today we have a virtual appointment with the Infectious Disease doctor @ 3:30pm.

  2. Tomorrow: Wednesday March 13th—-Appointment with liver specialist, cardiac transplant team(possibly with social worker and nutrition department if they are available while we are there). If not we will meet with them another day.

  3. Chest Xray

  4. On Monday March 18th Kendall will be having a heart catheter procedure. I asked them to coordinate the procedure with ENT also because they also have to evaluate her airway so they may as well do it while she is there sedated right? Makes sense to me…

As always thank you for going through this journey with our family

#TeamKendall

#HeartWarrior

Cewanda

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