Dec 6th updates

Hello everyone. Wanted to let you know what has been happening since my last post. Kendall is still in the hospital getting treatments and nutrition. She has not had a fever in 6 days!!!! She has started to have more energy and not having to take so many naps because she wasn’t feeling well. Her appetite is gradually getting better. TPN(nutrition) is still going through her IV until she is able to eat and drink closer to the goals they have set for her. She’ll get there in her own time……She will stay in the hospital until it is safe for her to go home and we don’t have to worry about dehydration.

Biopsy

The biopsy from the lymph node came back. The diagnosis was monomorphic PTLD.(research it to learn more and get a better understanding of it). She received another dose of the Rituxan yesterday and did fine. No allergic reactions to it.

The plan is to give one more infusion of that same medication next week. In 2 weeks she will start chemo and steroids weekly on an outpatient basis.

They are going to decrease her (TPN) tonight so that she will feel hungry and start eating normally again.

PT/OT have been coming and doing strengthening exercises with her because she has been in the bed for so long, only getting up to go to the bathroom. For the past few days she has been getting up walking to the bathroom, around the room, and sitting in the chair for hours.

Today she had a bone marrow biopsy to make sure that the cells have not spread and a different treatment plan is needed. We believe nothing has spread and it NEVER will. She is going to come through this just like she always has. We have no doubt about it. No if ands or buts about it.

Another testimony of God’s grace and mercy right before our very eyes. Another miracle on the way!!

Periodt!!!

xoxoxoxoxoxoxoxoxoxo

#TeamKendall

Dec 6th updates

Hello everyone. Wanted to let you know what has been happening since my last post. Kendall is still in the hospital getting treatments and nutrition. She has not had a fever in 6 days!!!! She has started to have more energy and not having to take so many naps because she wasn’t feeling well. Her appetite is gradually getting better. TPN(nutrition) is still going through her IV until she is able to eat and drink closer to the goals they have set for her. She’ll get there in her own time……She will stay in the hospital until it is safe for her to go home and we don’t have to worry about dehydration.

Biopsy

The biopsy from the lymph node came back. The diagnosis was monomorphic PTLD.(research it to learn more and get a better understanding of it). She received another dose of the Rituxan yesterday and did fine. No allergic reactions to it.

The plan is to give one more infusion of that same medication next week. In 2 weeks she will start chemo and steroids weekly on an outpatient basis.

They are going to decrease her (TPN) tonight so that she will feel hungry and start eating normally again.

PT/OT have been coming and doing strengthening exercises with her because she has been in the bed for so long, only getting up to go to the bathroom. For the past few days she has been getting up walking to the bathroom, around the room, and sitting in the chair for hours.

Today she had a bone marrow biopsy to make sure that the cells have not spread and a different treatment plan is needed. We believe nothing has spread and it NEVER will. She is going to come through this just like she always has. We have no doubt about it. No if ands or buts about it.

Another testimony of God’s grace and mercy right before our very eyes. Another miracle on the way!!

Periodt!!!

xoxoxoxoxoxoxoxoxoxo

#TeamKendall

what a week. November 30, 2024

These updates may also be out of order but I will do my best to get all of the info in that I can.

Since being admitted a week ago Kendall has gone from ER, to PICU, to the oncology/hematology floor.

As you know she started having symptoms of fever, diarrhea, being tired, loss of appetite which her brought her into the hospital ER. From ER she was transferred to PICU( pediatric intensive care unit). She stayed on that unit for a few days and then was transferred to the hematology/oncology floor. The reason for this was because every viral test that was done came back negative and they wanted to start a treatment because all of her symptoms were more in line with PTLD which is Post Transplant lymphoproliferative disorder( if you google it look at a site such as the Mayo clinic website). for the more accurate explanations of what this means.

She had a CT Scan and a PET scan which showed that the lymph nodes were inflamed and spreading in multiple areas of her body. Based on her symptoms and the fact that she was negative for all respiratory infections, it was agreed upon with the doctors that she has PTLD which is a type of lymphoma that you can get after an organ transplant. Now that her own immune system has been so suppressed she is having difficulty fighting off this EBV virus.

She got a Picc line IV and a lymph node biopsy. from her neck on Wednesday.

In the meantime the doctors decided to start her on a medication called Rituxan even before the full biopsy results came back. They initially started it on Wednesday and after 1 1/2 hours she had a reaction from it: temp 104, breathing fast, HR 140s. They stopped the infusion until they could come up with a different plan.

On Thanksgiving Day the Rituxan was restarted and infuse slower and she was able to receive the full dose.

She hasn’t had an appetite and hasn’t eaten much at all in the past 3-4 days so they started giving her nutrition through her IV.

The EBV levels have been going up so the plan is to start chemotherapy once a week at the infusion center at U of M Motts children’s hospital. She will have PET scans over the next few weeks/months to determine when therapy can be discontinued.

Whenever it is safe for her to come home, she will come home with the PICC line so that she won’t get poked everytime she goes to the hospital.

Everyday we continue to pray, trust, and believe that everything will work out and the facts can change!!

God will work it out and we will see yet another miraculous victory that Kendall has come through.

xoxoxoxoxoxoxoxoxo

#TeamKendall

#BeKendallStrong

U of M updates November 19 2024

Hello everyone..

Kendall was discharged from the hospital on Wednesday Nov 13th. The EBV blood levels have been continuing to going down so it was decided that it was most likely a viral infection and not lymphoma. Blood draw values will be weekly and followed closely by Oncology/Hematology, Infectious Disease, and transplant cardiology team.

Biopsies from colon showed evidence of EBV but not lymphoma thank God!!

She was started on another immunosuppressant medication called Everolimus. She still remains on the tacro and blood work will be done weekly and doses adjusted according to the values.

Fast forward as of today….She had more blood work done and had an appointment with hematology/oncology.

Theses frequent blood draws have caused her to have some emotional breakdowns. We purchased a device on Amazon that vibrates and it’s placed on her arm above where they are going to poke. It helps a lot and distracts her from the poke with the needle so she doesn’t feel it. We have used it the past couple of weeks and I will make sure we have it with us every time she has to go to the hospital from now on.

They did a physical exam and could not feel any obvious swollen lymph nodes. The plan is to see them frequently for the next few weeks until EBV numbers are low enough that she doesn’t require any interventions from their team.

I just looked at her blood work on the patient portal and it looks like her tacro levels are low and the new medication (everolimus) levels are high. We will be getting a phone call from the transplant team in the morning to adjust those doses.

She is being weaned off prednisone and her last dose will be this Friday.

Other than being a little more tired she feels great. We are still working on getting her outpatient PT/OT. speech and cardiac rehab scheduled.

Thank you all for your continued love and support and all that you do that lets us know you are on this journey with us.

#TeamKendall

#BeKendallStrong

#NewHeartNewStart

U of M updates

It has been quite the week. Some of these updates may be out of sequence but you will get the point.

Recap: The reason she was admitted into the hospital last week was because the EBV numbers had tripled over a few weeks. It was smart to have her admitted for monitoring before she became symptomatic at home.

PET scan- results showed areas of “concern” or to be watched carefully. The areas that they saw on the PET scan showed signs of inflammation from a viral infection or PTLD(type of cancer organ recipients have the unfortunate chance of contracting). The areas that lit up on the screen during the PET scan were 3 lymph nodes( neck, under both armpits), the spleen and the colon.

The initial plan was to do a lymph node biopsy this week to check for lymphoma but that was put on hold because her EBV numbers have started to come down and they suspect it is more likely a viral infection from EBV virus(or the virus has turned into Mono). The reason the numbers were so high to begin with is because she is on immunosuppressant meds and her immune system was not strong enough to fight it. The way to help her body fight off the infection is to lower the doses of the medications so that her own immune system is forced to build itself up. With that being said the downside of lowering the medications is that the heart has an increase of failure/rejection because the medications required to help to not reject have been decreased. I’m telling you we have been scratching our heads like what?? Huh??? It all makes sense but it is a lot to process.

11/6- heart cath/biopsy done. Results were that there was no evidence of rejection

During the week Kendall has been consulted with GI. She had an upper scope and colonoscopy. Biopsies were taken and results will be in some time this week

ENT consult- they were consulted because Kendall’s vocal cords don’t move and open and close like ours. That is why she was getting choked on liquids and her voice is hoarse but is getting stronger.(this is not new. this has been ongoing since she was a toddler). ENT is trying to figure out the safest procedure that they could do in the future to her vocal cords that would help her breathe easier and her voice to get stronger. It will also get stronger once she is doing speech therapy full-time.

Oncology/Hematology- they are watching her lab values closely as well. They are the ones who told me the results of the PET scan but will not intervene with aggressive medications unless absolutely necessary.

Music Therapist- stopped by a few hours before the scope and played the guitar and sang songs to Kendall that helped her with anxiety and helped calm her down. This may not seem like a big deal to some but it helps Kendall to calm herself, focus, and most importantly makes her smile.

As of right now we are waiting on the results of biopsy from colonoscopy and also more blood draws to test the levels of infection.

She started PT/OT today. They take her to the gym and give her a good work out. She is walking to and from sessions. Appetite is good and she is back to using her IPad to play games which she loves to do. She has also been able to do some of her virtual lessons this school recently.

I am reporting to you what the doctors have told us just to be real about what is going on. But every report we get that we know is not Gods will for her life, we listen to it but don’t accept it as the truth over her life and her future. It’s just another obstacle and hurdle that will make her (and all of us) stronger because we get to pray and watch God come through while we have faith and believe. She has come too far and was gifted a “beautiful’ heart according to the doctors so I know that this too shall pass.

Thank you for staying in faith with us. Your support means everything!!!

#TeamKendall

#BeKendallStrong

U of M bound

Hello everyone.. Didn’t get to update this weekend like I planned but here it goes…

All appointments went well last week. We absolutely love her new primary care doctor. She passed her swallow test so no more thickening her fluids!!!!

Labs were drawn and her tacro level was finally in the normal range so her dosage is still 3 mg/day.

However, we received a call from the transplant team yesterday and her Epstein Barr Virus levels continue to increase. She is going to be admitted into the hospital tonight so that they can run further tests. She is also going to have a heart cath/biopsy tomorrow morning at 8am.

As soon as I know more about what happens next, I will let you all know!!!!

#TeamKendalll

#BeKendallStrong

more updates

Last week Kendall’s tacro levels were still high so we went down to 3mg/day on her medication.

She has been walking up and down the stairs without help. Also taking short walks outside without needing to stop and take a break.

GI appointment yesterday- will have an upper scope and colonoscopy in the near future

Oncology/Hematology- had appointment here today. we were referred to this speciality because of the high Epstein Barr Virus levels. They will continue to watch her levels weekly and treat accordingly. We were given a bunch of symptoms to look out for and will order tests based on symptoms, blood work, and infectious disease doctor recommendations.

Wednesday- virtual appointment with infectious disease doctor

Thursday- blood draw at U of M main campus. Then appointment with new primary care doctor which is about 15 minutes from hospital.

Friday- Swallow test re-evaluation at U of M

I will keep you posted at the end of the week after all appointments are completed.

Overall, she is feeling well, in good spirits, and is adjusting to her new responsibility of knowing when her medications and inhalers are due to be given. She has lost 20 pounds since her first admission to the hospital. It’s all good though. She has lost a lot of water weight and her swelling has gone down so much. She even needs a new wardrobe because all of her clothes are too big. You already know she is excited about that part. Lol

I will be posting this weekend(don’t hold me to it) to update you all on the the rest of this weeks appointments!!!!

Thank you all for continuing to follow her miracle journey

#TeamKendall

#BeKendallStrong

Monday October 21st

Hello everyone. Kendall is doing really good at home. Feeling better, walking better, eating/drinking better.

Her last blood draw was last week Thursday. Her Tacro level (anti rejection med) was high. The normal range they want it in is 10-12. 2 weeks ago it was low at 7.9 and she had to go up on her medication dose. Last week it was high so we went back down on the dose(4mg/day). I am waiting for a call back from the team to go over the Epstein Barr virus and C. diff results from the stool sample.

-Wednesday blood draw will be done at U of M lab in Ann Arbor early morning. We decided to take her there because if they can’t find a good vein to draw her blood from after 2 pokes, they can call the IV team to come and do it with the help of the ultrasound device. Also we will have one of the Child Life Specialist there to help talk Kendall through it and give her some distraction techniques.

-Wednesday @ 1:15p she has a zoom with the physical therapist from the school district

-Wednesday 4pm follow up zoom with the psychologist

That’s all for now.

Have a great day…

#TeamKendall

#BeKendallStrong

Week 1 at home

It has been exactly 7 days since Kendall has been home after receiving her new heart. We are extremely excited, grateful, and blessed. We are definitely getting adjusted to our new normal.

She has been feeling pretty good. We have a system/schedule for medications, exercises at home until she can start therapy, allowing extra time for such things as dressing, bathing, eating, virtual school etc….she is in control and everything is based on how she feels and how much energy she has.

There are a lot of appointments coming up but I will post them as they come up so that I will be able to provide you with more frequent updates.

She has to get her blood drawn once a week in order to check to see if her immunosuppresant medications need to be adjusted. Last week her levels were low so we had to increase one of the medications from 4mg/day to 5mg/day. After tomorrow’s blood draw/results, we will adjust again according to the numbers. Also last weeks results showed that she had a high level of EBV(epstein barr virus). We were told it is common to see this virus after a transplant because of getting a donor heart and also blood transfusions. Having this virus after transplant can cause some very serious complications if you don’t take your medications on time and/or not communicating to transplant team of any changes in her condition that are out of the norm at home.

She was negative for this virus prior to transplant so she had to have contracted it from another source. We were educated about symptoms to look out for that we should notify the doctors about but as of right now, she feels fine. She takes some mini naps on occasion but other than that she is symptom free of any virus. Since the levels were on the high side last week, tomorrow is the 1 week repeat lab day and we have to take her to a U of M lab in Northville.

We have resumed online virtual learning gradually and trying to do work in at least one subject a day.

Thank you for everyone that showed up for her surprise drive thru, for any card, text, phone call, flowers, and gifts that you have sent. We know we have a very caring and supportive team and we are so grateful for anything that you have done to show your love and support.

#TeamKendall

#BeKendallStrong

No inpatient rehab needed.......Kendall gets to go home in a couple of days!!

Yes you heard it right. Kendall is going to be discharged soon. There were so many updates that I didn’t get a chance to post but this good news outweighs every thing that I was going to report.

PLANS:

-outpatient PT/OT/Speech therapy for however long she needs it

-She is on 3 different medications for anti-rejection/immunosuppression. Her immune system had to be wiped out in order for her body to not reject this heart that is foreign to her. Her heart, lung, kidneys, brain etc….all have to “get to know each other” so to speak. Her other organs are not used to all of this blood supply that it wasn’t getting before so just because she received a new heart, she still will need a lot of recovery time before she feels better than she did before she got the heart. With that being said we have strict instructions when she goes home. Because she can’t fight off viruses and infections like many of us can, she will be homebound for the first 3 months unless she is going to an appointment. Masks are going to be a fixture in our lives for a long time in order to keep her protected.

She has to have her blood drawn once a week to check levels so the medications can be adjusted. (not sure how many meds she will be on daily but I know its 10+)

-lots of follow up appointments

-after the transplant she never complained of pain from day 1. I had to make her give the nurses a pain score # because she literally always answered “no” when you could clearly look in her eyes and see in her movements that she was hurting. Even then, the highest pain level she has ever said was 3. She amazes me!!!

All in all she has had more good days than bad days. Things happened that we were told was normal even when it didn’t seem like it to us. Just watching everything she went through that made us feel helpless and sad at times, we couldn’t stay down long because the way she handled all of this was on another level. She fought through it and never complained or wanted to quit. She is truly a warrior and watching her through this whole process has changed our family’s lives. Because of Kendall, we know we can get through anything that we are faced with in our lifetime. She is truly a miracle child that was put on this earth so that people can see that God is real and He performs miracles over and over again. Not just for her, but for all of us.

Thank you is not enough for all of the support shown through your prayers, texts, gifts, money, meals , acts of kindness etc…..

***We love you all but please don’t just “drop by to see us/her.” This is a critical time for her so please respectfully honor our requests. I will update more now that she will be going home.

Keep her in prayer as she goes through the rehab process

The ENTIRE team at U of M was hands down amazing, professional, considerate, compassionate, sympathetic, empathetic, caring, educators, support system….I could go on and on. We are very pleased with the professionalism and care Kendall and our entire family received from Day 1.

Cathy Hodge Farris—Kendall’s primary nurse in PICU….You have taken care of Kendall since she was a baby back at DMC and you will always be part of our family and hold a special place in our hearts. Thank you for helping us get through this(and for answering my phone calls/texts in the future too) lol

#TeamKendall

#BeKendallStrong

26 days post op transplant

Good morning everyone. There is a ton of updates to give you and I will send them out either tomorrow or Saturday. For the time being I just wanted to let you know Kendall is having another swallow test this afternoon. We are still adding a thickener to all of her liquids that help prevent her from coughing/choking when she drinks. They want to do another test just to compare it to the one that was done a couple of weeks ago.

Also she is having a heart cath and heart biopsy tomorrow morning. This is routinely done about a month after transplant to check on the pressures in the heart/lung and see how the new heart is functioning.

Doing great in therapy. Getting stronger by the day…..

Love you all

#TeamKendall

#BeKendallStrong

September 28th 3 weeks post op

Really doesn’t feel like 3 weeks since the surgery. Kendall is doing great and better than anticipated by the doctors. She is only on 1/2 L of oxygen.

-they have changed some medications around due to stomach upset

—she has blood work(to check the levels of the immunosuppresent medications every other day to see if the meds need to be readjusted

= chest xrays are done every other day

-ECHO(ultrasound of heart once a week)

-cardiologist said today that she is doing well on a cardiac standpoint and at this point the thing she needs most is physical, speech, and occupational therapy. Some day in the near future she will be transferred to the rehab floor so they can have access to her to do therapy more often. This is the last step before coming home.

-we have to do a lot of education this week from nutrition, therapy, post op care for her wounds/scars, and follow up appointments.

Gods perfect timing is all that I can say. Everything has happened in the time and space that He has predestined long ago.

-i know that our village has been with us since day ! and we will need your support now and forever

Prayers for Kendall’s rehabilitation, strength and peace of mind during these next few weeks are greatly apprecited.

Thank you all

#TeamKendall

2 weeks post op heart transplant

Hello hello hello!!!! No matter what we are facing or going through I always hope everyone that is on this journey with us and their families are doing well also…..

Since it has been a while since I updated this blog I think it will be easier to give bullet points instead of long paraghraphs until I am able to post more regularly.

Since last week these things have happened(minus a whole lot that I can’t post because I can’t tell it all in 1 post) lol

-PT/OT has been working with her daily, They have her doing many exercises to strengthen her core and wake up those muscles that she hasn’t used in a while.

-Getting from bed and taking a few steps to the chair. Sitting up in chair for a few hours. Also does arm and leg exercises while she is in the chair.

-has a wrap on left arm to help with swelling in that arm

-one of her nurses had a spa day with her and painted her nails blue

-had spacer wires removed

-tried to drink and eat and started gagging. coughing and choking so the speech therapist stopped by to do an assessment. Kendall also went for swallow test. They found out that liquids make her cough and feel like she is going to throw up so for now any liquids she has need to be thickened and she has to eat small bites of soft foods until those muscles in her neck are functioning correctly.

-during the day she typically wears a high flow nasal cannula and a CPAP mask at night. Sometimes when she is working hard to breathe she has other devices to use and/or she has to put on mask during the day until breathing, heart rate etc….are back to normal

-lung specialist ordered 2 new inhalers to help her with her breathing

-she is doing well over all. Getting back to sitting/standing/walking, eating and feeling stronger is going to take some time but she is making improvements everyday.(she is getting tube feedings until she is able to fully eat on her own.

-she has 2 chest tubes in that have been draining less and less and they should come out today. If they are able to remove the chest tubes and the CPAP she will be able to go back to 11W which is the cardiac floor she started on.

-Ultraound of heart shows that the right side of it is “stiff” and is working fine but not yet pumping with ease like it should be. Surgeon said this is very common because the new heart has to learn how to pump in a new body with only 1 long. They have medications that they use and continue to tweak to improve the function.

-heart cath pretty much showed the same things. There are no signs of rejection. Her new heart is very healthy. The right side is going to take some time to be fully functional because her body was used to having only one chamber on the right side and now it has 2 so it has to reset itself to the change to keep up with the extra blood flow.

-Kendall has never been a child that complained about anything including pain. She always goes with the flow

and minimizes her feelings and/or pain so we literally have to tell the nurses when she needs pain medication by reading her body language, and eyes . Even after all she has been through she never complains.. The doctors, nurses snd therapists have even said it. They are amazed about how resilient she is.

II’m sure that there is a lot that I missed but I am very sleepy and going to bed. Sorry if there are a bunch of typos.

-continue to pray for her recovery and therapy so that we can help her be the strongest she has ever been

Love you all and continue to support #TeamKendall

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