3 months post transplant (almost)

 Can anyone else believe it has been three months since Ebonie had her heart transplant! It's truly still something I have a hard time wrapping my head around but reality is setting in that our lives will never be the same again.

 Yesterday Ebonie met with the ICU Recovery team, it was so hard to hear an (almost) daily recap of her ICU stay; they talked about the good: first time she stood, first time she ate real food and the bad: having to be shocked, how she died three times and all of the surgeries and treatments. 70 days worth of more medical treatment that Ebonie has had in her combined 18 years! 

Major events of hospitalization are as follows:

• 03/07/23: Cardiac Arrest at track practic

• 03/08/23: Transfer To CCHMC - transfer to UCMC Cath lab PEA arrest, CP impella, VA ECMO fem-fem cannulation, Right and left distal SFA perfusion catheters

• 03/09/23: Admitted to UCMC CVICU, TXP/LVAD referral started. Palliative care: learned superstar athlete, student leader.

• 03/09/23: Right CFA impella removal with primary repair and right SFA antegrade sheath removal with primary repair, right lower extremity thrombectomy

• 03/10/23: RAMP study, high dose steroids and plex

• 03/12/23: Decan with Emergent re-cannulation of VA ECMO

• 03/17/23: PLEX complete Extubated.. Recurrent VT polymorphic.

• 03/18/23: Torsades, multiple cardioversions

• 03/19/23: Cardioverted

• 03/20/23: GI consulted for coffee ground emesis

• 03/20/23: Central ECMO Decannulation. Orthotopic, Bi-Caval Heart Transplant with Dr. Louis. Intubated

• 03/21/23: Renal Consult - No CRRT

• 03/22/23: CRRT, volume removal

• 03/28/23: Biopsy RHC

• 03/29/23: Extubated

• 03/31/23: Remaining CT removed:

• 03/31/23: Transplant Psychology Consulted. Stood 30 sec with PT/OT

• 03/31/23: SLP- Moderate severe cognitive linguistic deficits. Blind MOCA 5/22. 10 Ice chips

• 04/01/23: Not sleeping. FEES - Dysphagia 2

• 04/03/23: TDC consult

• 04/05/23: Arrhythmias overnight. RHC w/ Biopsy

• 04/07/23: Thoracentesis 957 ml from Right Lung

• 04/08/23: Optho consulted - no evidence of CMV retinitis

• 04/11/23: TDC placed

• 04/13/23: ACS for acute abdominal pain: Colonic pneumatosis. Bowel rest and antibiotics

• 04/15/23: TPN

• 04/17/23: RHC with Biopsy

• 04/18/23: TPN stopped

• 04/19/23: Plastic Surgery Consult Right groin. Necter thick clear liquids

• 04/20/23: Bilateral groin debridement with vascular surgery. Coverage of right femoral vessels with sartorius muscle flap and placement of right groin wound vac with Dr. Slater

• 04/21/23: Advance diet. Klebsiella UTI

• 04/24/23: TDC removal

• 04/27/23: RHC with biopsy

• 04/28/23: Regular diet with thin

• 04/28/23: PM&R consult

• 05/02/23: Prom

• 05/03/23: Sternal wound vac placed. MOCA improved to 25/30

• 05/07/23: RHC with biopsy

• 05/07/23: Code Stroke, small hematoma in the caudete nucleus. MRI head Interval left frontal and basal ganglia infarct

• 05/09/23: TEE - PFO

• 05/17/23: Discharge to Home with Home Health

Interval history since discharge:

• 05/22/23: Appt with cardiology

• 05/31/23: Appt with infectious disease

• 06/01/23: Appt with cardiology

• 06/01/23: Appt with plastic surgery

• 06/02/23: Appt with psychology

• 06/02/23: Appt with ENT

• 06/05/23: Appt with cardiology

• 06/06/23: Appt with vascular

• 06/07/23: Appt with hematology

• 06/09/23: Appt with Neurology Clinic

• 06/15/23: Appt with cardiology

• 06/16/23: ICU Recovery clinic

 
Ebonie has 17 more appointments scheduled so far in the next 3 months; there will be more appointments as we figure out fixing her PFO, removing cartilage to improve vocal cords, possible plastic surgery. She will have follow ups to monitor medication changes, hopefully soon reducing some of her medications, wound healing and recovery.

Ebonie will have cardiac rehab at Kettering Health 3 days a week for 12 weeks, looking forward to intense out patient speech rehab for stroke recovery and OT to build back strength.

We have been blessed by a dear friend helping with meals, and getting our house put back together. My job has been flexible to allow working from home. Coaches who have been encouraging and helping Ebonie! 

Over It!!

 I started this blog 4 days ago... I got the title 'Over It!' Well since then, not that I actually wrote anything then, but I am still over it. 

 Sunday evening around 6:30pm Ebonie had a stroke. The brain bleed affects her language; in Ebonie's head she is communicating clearly and understands everything people are saying around her. The problem is the keeps calling things the wrong words or can't think of the words she is trying to say. I cannot imagine how frustrating that must be! It's beyond frustrating not knowing what she needs or wants and watching her struggle so much just to ask to be rolled over, have her pillow moved or ask to get a drink. We are finding ways, like playing 21 (sometimes more) questions while I try to guess with yes and no questions to see what she needs. 

 Last week we did so much transplant education, pharmacy discussions for planning meds, and started getting ready to be discharged on May 10th so Ebonie could attend her last day of high school and get to all of the fun senior things the last week. Now I am just praying that somehow she gets to attend graduation! I hate this all for her; to be an amazing student who has given her all to get good grades, play 3 sports, Student Body Vice-President, AFJROTC staff, working sometimes 2 jobs and all still doing so much around the house. I feel like everything is getting ripped away from her in the most unfair way possible! She did absolutely nothing wrong to deserve this and it is breaking my heart!!! 

 Remember to take every day as if it were your last! Tell people how much you love them or how much they mean to you! Never take for granted that you will have another day or fix your relationship later; we almost didn't have a later! There are still moments like Sunday that change everything! 

51 Days!

 This week has been a whirlwind! After having surgery on both groins to repair some damage from the ECMO lines; this week has been filled with changing the wound vacs! It's really interesting to see the progress every time they take the patches off. Ebonie will have to have these on for 6-8 weeks and then will need more surgery in the future to fix it again.

 She is making so much progress though, the dialysis line came out, the PIC line in her arm is out and the feeding tube is out! Although she is still getting some medication to help her kidney function, they do not think she needs the dialysis anymore. She is down to IV fluids and an antibiotic so just one line for that medication. And she passed her swallowing test and has advanced her diet back to regular food and drinks! 

 Physical Therapy has been a bit of a setback but hopefully rehab will help more! Right now, her thigh is numb from the groin surgery, but they think over time she will regain sensation. This has caused a bit of unsteadiness, so we are back to very short walks with a lot of support. During her evaluation today they said after laying in bed for about 10 days you loose about half of you muscle mass and strength and Ebonie has been in bed 22+ hours a day for 51 days! Occupational Therapy has been great with fine motor skills like handwashing, face washing, opening medications and pinch grip. Ebonie is learning to grip a pen/pencil to write again and compensate for the tremors caused by one of her anti-rejection medications. 

 The track team came down on Wednesday to visit; this as great but Ebonie was also so nervous. She worked hard all weekend and at the beginning of the week to have enough of a voice to talk to everyone. She said most of the kids asked the usual questions; how are you, are you coming back to school and hope you feel better. But a couple of the newer throwers did ask for advice and help with the technique which was actually a boost for her too! 

Week 6

 This has been another week of ups and downs and last-minute changes! Last weekend we got to go outside on Saturday! It was a beautifully sunny day; Ebonie got to get her hair actually washed and combed out. Sunday, Lexi & Cindi visited and PT came in to work on standing from the side of the bed. 

 Monday Ebonie had a heart biopsy that had been postponed from last week's stomach issues. This came back a couple of days later with R1 rejection and 55-60% function! This is great news! PT got Ebonie up walking around the unit and she walked about 1/4 of the way around. OT also worked to get some of the fluid off of her arms and to improve coordination. 

 Tuesday Ebonie played air hockey with OT and walked about 1/3 of the unit with PT. She had some good news of being able to get out of the bed to take care of personal needs which helps to feel more like a person instead of a patient. While we were talking Ebonie asked when she was going to get her new heart and we realized that because she has been so disoriented people talk about her but not too her. No one had told her she had the heart transplant and was on the recover course. 

 The cardiologist for the week was talking to Ebonie and told her that if she had not gotten her new heart by the end of the week when she did she would not have made through the week. There was a little miscommunication with her so until I was able to finally get her to tell me she thought she was dying this week. No one had specifically told her she had the heart transplant! She has been so heavily medicated that the last thing she remembers is doing stations at track practice. There are a few things she remembers here (the crash cart and being shocked) but it's probably good she does not remember much! One day she can read this blog and know more if she wants. 

 Wednesday was a bit of a frustrating day since Vascular Surgeons and Plastic Surgery came in and decided Ebonie needed surgery first thing in the morning to have her groin incision from the ECMO lines. The wounds are healing from the outside but not on the inside. So they opened her right groin and said someone would be back later. Ebonie walked 1/4 of the unit with PT and walked over to the sink, stood at the sink to brush her teeth with OT. 

 Thursday, they decided to take her down to clean the left groin and put a wound vac on it to promote healing. The right side they pulled her sartorius muscle over the veins that were exposed and then put a wound vac on that. The rest of the day was pain management and dealing with bedrest! 

 Bedrest is getting old and really boring especially when you can't even move your legs or roll over! Thankfully grandma visited and Mrs. B came to hang out for a bit. Ebonie is gaining independence every day and working on being able to feed herself, get her own drinks off the table, being able to rub her eyes (more of a reach thing) and little tasks that make her feel like she is able to do more on her own rather than having someone wait on her every need. One more day of bed rest and then Monday is going to be a busy week again! 

Three Steps Forward, Two Steps Backward

 4/10 - Mondays are always a bit crazy because all staff is back in the hospital! PT has been less than impressive, but Ebonie did get up the chair to hangout. OT worked her a bit more practicing sitting and standing up from the recliner. Coach L came and dropped off Ebonie's new iPad which has been helpful with Face Timing family and friends, watching movies and playing some games. 

 4/11 - Today Ebonie finally got the dialysis line out of her neck and placed in her chest for a more permanent line. This has helped relieve pressure and helped with being able to hold her neck up and move more comfortably. 

 4/12 - Today I GOT A HUG!!! A real hug! I am now allowed to help Ebonie stand and move from the bed to the chair and back, of course only with a nurse in the room. Speech Therapy came in and helped Ebonie with some exercises to work her vocal cords and help strengthen them. Her heart biopsy was moved (ended up getting canceled this week)

            THOSE WERE THE THREE STEPS FORWARD

 4/13 - This starts our two steps backward. Thursday was an ok day with OT/PT. Thursday night Ebonie's stomach started to swell and she was in excruciating pain! This lead to several surgeons coming in to evaluate and examine Ebonie. There was a lot of pushing, tapping and feeling her stomach. We were up until almost 2am with trying to get enough pain meds to get comfortable.

 4/14 - Today we learned Ebonie is not allowed to have food/drinks by mouth again for 3-7 days! This sucks because Ebonie was just getting to eat food again. The heart biopsy has been cancelled for the week and the barium swallow test has to be postponed until further notice. This did allow Ebonie to sleep until 10:30 this morning which is the latest she slept in the last month. OT came in and Ebonie sat in the recliner for about 5 hours napping and watching movies. It has been an emotional day as Ebonie started to realize she is missing so much with her senior year! We are still working hard to get to graduation but there are so many things up in the air currently. 

What a Weekend

 Friday Ebonie had two visitors, Alexis brought Ebonie a couple gifts and visited. Then Cindi came to hang out with Ebonie, and I was able to have one of the most productive days to get so many things done. 

 Friday was a big day with walking almost 5 feet across the room with PT and getting a new therapy item (thera-puty) with OT and some new exercises to work on. Ebonie had dialysis getting over 2 liters of fluid off and then they also drained almost a liter of fluid off of her lung. It was amazing how much better she was able to breathe! There were a couple of setbacks though; Ebonie has a viral infection in her blood and an undetermined infection, so she had to take antibiotics and antiviral medications. She also has a pocket of air in the muscle wall of her bladder. 

 Saturday Amy and Bailey came to visit and got to see Ebonie sitting up in her "throne", the bed goes up to a full recliner chair but because it is so big it reminds me of a throne. Ebonie finally slept for 8 hours Friday night from about 1am-9am! She had an eye exam to ensure she did not have any lesion with the infections that she has. They think her eyes looked good but it will take time to tell how her vision is. She also had another round of dialysis which took almost 2.5 liters of fluid off again! 

 Sunday was a bit of a lazy day; Nurse Sophia worked on getting some of the matte brushed out of Ebonie's hair while I washed and scrubbed her feet. Hopefully rubbing and stimulating her feet will help with moving some of the fluid. A second CT looks like the air in the muscle wall of her bladder is improving so hopefully that will resolve on it's own. 

 Hopefully this week Ebonie will get a little more intense therapy and get moving a little more. This will help with the little bit of pneumonia, help with her appetite, help with boosting her mood and energy levels. Maybe we can even get outside for a bit!

Walking Finally

 Today was a great day at the start! Ebonie's nurse got her sitting in the recliner which she liked but it was exhausting. OT came in while she was sitting there and gave us some hints for helping her with grasping (holding a toothbrush, silverware and other items). Then PT came in, she worked with two new people and they got her up standing and walking across the room! She went about 6-7 steps two different times! We got her back in the recliner for a couple of hours. She napped for about 1.5 hours before having to move rooms. 

 Maintenance came in to clear the sink drain but didn't think about the impact to an ICU transplant patient and exposed her to all of the bacteria and germs when they started clearing the drain. (It was impacted with non-flushable wipes and poo) so since that all became airborne contaminates and dangerous for Ebonie. This also meant everything had to be packed and cleaned to go into her new room. All blankets had to be packed up and washed. Ugh! I liked our room, and we had a great view but now Ebonie has a decent view of the skyline and courtyard. 

 Nicole, our friend and dental girl came in for a visit and brought all kinds of oral care things. We talked about showing it to OT and getting help using the new toothbrush which should be easier for Ebonie. Coach and Mrs. Russell came to hang out with Ebonie while I had to wash all bedding and shower after our room change. 

 Ebonie's new meds are helping her sleep so far so we will see how long this lasts!