Andre Xavier's Blog, page 8
July 29, 2022
Day 323 | JULY 30, 2022
Good Evening Friends; today is day 323 of our new and fantastic life!
We have a tradition of taking it easy in the morning, and London loves to come to our bed and watch cartoons; it is so sweet to see his excitement to watch cartoons on a Saturday morning. Of course, Julien is now part of it as well.
Charlie had a busy morning, with shower and wound care early on, she is also dealing with the tampering with her IV meds, and that is causing some discomfort to her; it is a hard reality for burn survivors, the opioid dependence; please pray that her doctors and her body can keep the balance and avoid going into withdrawal.
This will be a difficult challenge to face when the time is right; Charlie is strong, but for no fault of her own, her body has a dependency; we are so grateful to have stable and strong family support because we know it is essential to overcome the dependency, we pray that God continues to guide us in the right direction when the time comes to tackle this complex issue.
We tool it was today, we players outside during the morning, after lunch, we played for hours with magnetizes, Julien is now learning to build instead of list destroying London buildings.
I am so grateful for the opportunity to be present with the boys and create memories that will last a lifetime.
Vovo kept me busy today; she is the cleaning and organizing the house for Charlie's arrival! She is not able to stand still :); I am going to miss her so much! But she needs to go home and rest; she has worked so hard for almost a year, and I am forever grateful for her help!
I haven't asked a question in a long time; if you could, what would you say is the number one take from following our story now for 323 days?
I would greatly appreciate it if you could share that one thing.
Thank you for your prayers and support!
May God Bless You!
André
July 28, 2022
Day 322 | JULY 29, 2022
Good evening, friends; today is day 322 of our new and fantastic life!
Oh, baby Julien, I woke at 4:50 am. That was the beginning of my early day.
I got the boys ready, and we ate breakfast, and just like that, it was time for our beloved Nanny to arrive.
Today Charlie called in the morning and got to see the boys playing after breakfast, and she also called me after lunch.
This time she had surprising news
Charlie informed me that her doctor told her she was coming home on August third! Next Wednesday!!
We are both beyond excited and so happy!
We were expecting her discharge on Friday the 5th, so what a pleasant surprise, and that is just one day before Vovo departs in return to Brasil!
Charlie is so excited to have one last night to enjoy with Vovo.
My visit with Charlie today was with our perfect friend, and we had such a good time! We laughed and enjoyed pizza and nonalcoholic beers; it was great to see Charlie so happy!
Well, it is short and full of good news entries today!
Thank you for all your prayers!
May God Bless You
André
July 27, 2022
Day 321 | JULY 28, 2022
Good evening, Friends; today is day 321 of our new and fantastic life!
Today I was up early and left the house by 8:15 am. I had to be at VCU hospital by 9:30 am, and Charlie and I had an appointment with the VCU Marketing and Media team; they are creating a story about Charlie's medical journey and incredible recovery.
Charlie looked beautiful when I got there; she did her makeup and had a beautiful blue and white striped dress; the VCU team was so kind and accommodating towards us.
The best part of the morning visit was seeing for the first time Charlie using the walker to get up from the bed and using the walker to “walk.” she went from the bed to her wheelchair; it was truly amazing to witness! Charlie is truly a miracle, I will never forget the day her doctor told me that Charlie might never walk, and he didn’t see how she could stand up on her feet; well, here we are! Thank you, God!
We had lunch together, and just like that, our visit was over; I made my way back home around 1:30p; I enjoyed seeing Charlie during the day; almost all my visits were late afternoon and evening.
I brought over her C-Ville Weekly paper; she enjoyed reading it.
We continue to be grateful to God and look forward to having Charlie back home; my mom will be back in Brazil when that day comes.
Thank you for your continued support, May God Bless You!
André
July 26, 2022
Day 320 | JULY 27, 2022
Good evening, friends. Today is day 320 of our new and fantastic life!
My morning routine is becoming more and more consistent, I am still relying on my mom, but boy, I know that very soon she won't be here, as soon as next week!
I am not stressing about it, but I know that it will be hard on me; I will be solely responsible for getting the boys ready in the morning, breakfast, taking London to school, and all that before our Nanny arrives at 9 am. When she is done at 5 pm, it is me again, get dinner ready, bath and bed for both boys; I can't remember when was the last time that I had a work schedule of 9-5p, only God knows how I feel about it, but the reality of it is that won't matter, it is going to be my reality.
Until then, I have vovo to help me.
Charlie and I had hectic schedules today; she had, wound care, followed by hand therapy and a season with her therapist, all before 2 pm, and I had one but very long and important meeting; it was the first of my final arrangements with my editor, I have now finished writing the last chapter of our book, in the next few weeks, the final polishing, corrections, will happen and just in time hopefully, We will have our final manuscript and ready to be printed and uploaded, I am beyond grateful to God for giving me the strength to write every day and to you for encouraging me since the beginning with your kind and supportive words.
Charlie had a good day, but she did face some difficulties; she was supposed to have hand therapy today, but sadly they didn't come, and it is beyond frustrating, especially when she can see her hands become more and more deformed daily, Since her arrival at the hospital she has only been seeing three times by the hand therapist when she was supposed to have hand therapy at least three times a week!
Besides this issue, Charlie was very pleased with the C-Ville Weekly article; they did a great job telling her incredible story of survival; we are grateful for the opportunity to tell our story in hopes that it can inspire and give hope to anyone in need.
I also want to say thank you and welcome the new friends; over the last weeks, we have received over 1k new members, and I invite the latest members to visit our blog and start from the beginning if you take the time to do that, you will see the powerful journey that we have been since 9/10/21, it is nothing short than miraculous!
Tonight, I reflect on how far we have come and how grateful I am for the miracle given to us by God, and I also think about how much more we have to continue to go.
Thank you so much for your prayers, love, and support!
Have a good Night, and God Bless You!
André
July 25, 2022
Day 319 | JULY 26, 2022
Good evening, Friends; today is day 319 of our new and fantastic life!
We are now back into the normal flow of things, up early, get the boys breakfast, and by 9 am, our nanny was here.
So grateful to have her back; I had a hectic day ahead of me.
Two meetings, client quotes, and much work was done to prepare for Charlie's upcoming discharge.
I am so excited to bring Charlie home again this time; I have much less to worry about since the house modification has been completed; I am so grateful for the contractors that worked so hard to make it happen on time, on her first time coming home.
Today Charlie made a huge accomplishment; she was able to get up from her bed using a regular walker, and with very little assistance, she walked into her bathroom and was able to sit in her shower chair; this was the first that she managed to do that, and is a massive step towards more independence, I am just amazed by her ability to overcome pain and push herself!
We had an enjoyable visit; we listened to our first radio interview, and it is still surreal to hear ourselves telling our story; we are so humbled by God's miracle and your prayers and support! Just amazing how far we have come.
If you are local in Charlottesville, you can pick up a copy of the C-Ville Weekly, they have done a great interview, and they did a photo shoot with Charlie at the dairy market; I highly suggest you pick up your free copy, thank you Courteney Blum Stuart for your kindness in telling Charlie’s story!
Since I haven't visited Charlie in person in a few days, we had a nice stack of cards; thank you so much for continuing to send her encouraging words; she enjoys it!
Please continue to pray! And thank you for your support!
You can also listen to the radio interview on this link!
https://wina.com/.../charlie-anne-and...
May God Bless You!
André
https://www.facebook.com/551045544/videos/383954333846379/Day 315 | JULY 22, 2022
Good evening friends; today is day 315 of our new and fantastic life!
I stayed up late last night, and I was up early today, around 4:30 am because I was researching medical papers on hand deformities caused by RA and burns; I was amazed by how much I learned in 9hours of research.
I now have a potential diagnosis of her condition; I will refrain from speculating since I am not an actual doctor, but knowing what Charlie's condition is, I was able to search for a surgeon that effectively could potentially help Charlie.
I am so grateful for your many and incredible recommendations; I am waiting now to hear from one of your suggestions, Dr. Bobby Chhabra is the doctor we are hoping to be able to help Charlie’s hands, and I am praying that God guides us on this next phase of her care.
Today Charlie was off her bed rest, so when I got there, she was in her wheelchair:) she was so excited, and I was surprised!
Charlie mentioned that she noticed how weak her legs were compared to when she arrived; it is just insane how quickly one can lose muscle strength by being in bed.
Charlie was very excited about her new rings; a while back, Charlie wanted to get a new wedding band that would fit her swollen fingers, so today they finally arrived; they are a replica of her original rings; they are not authentic jewelry, but she loves what they represent!
Also, to our disappointment, the hand therapist did not come to see Charlie today, as they should; the purpose of the arm block was for them to manipulate her hand to regain her range of motion, but that didn't happen, and now it is the weekend, no hand therapist here until Monday. So out of the five days of the block, she may get only 2 of manipulation, which is very disappointing!
I had a wonderful visit with Charlie; I updated her on a great meeting I had today with an extraordinary non-profit; we are so excited about the giving back phase when the time is right!
I am so grateful for all of your support and help!
Just a reminder, the book's pre-sale is still in full swing! Now is the time to order your copy!
Thank you, and May God bless you!
André
July 24, 2022
Day 318 | JULY 25, 2022
Good evening, Friends; today is day 318 of our new and amazing life!
This morning I will up at my usual time and was ready for a busy and productive Monday.
The boys were ready in time; everything was going smooth, until I get a text from our poor nanny, she was sick and couldn’t come to work!
Well, my initial reaction was to be upset, how could I not have child care on a Monday! But that was short-lived because when I spoke with Charlie, she made me look from a different perspective; she said, how do you think she feels? On top of being sick, I am sure she feels awful.
Charlie was right; I had no business in being mad; I should be grateful that no mom was still here and could take care of the boys.
I had a busy day at work, and I was also occupied with Charlie's medical advocacy.
Today we needed to make sure the nerve block catheter was removed before an infection or nerve damage occurred, and I was happy when Charlie good me that it was removed by 10 am.
Today was also the day Charlie had her first shower! Yes! Poor Charlie had not had a proper shower since she was admitted; she was beyond happy!
Her grafts are healing very well, and so are her donor sites in her head, just her elbows that are a bit behind, but overall she is recovering amazingly well, Thank you, God!
We also received a significant update; her discharge team thinks that she will not need to make a stop at Sheltering Arms before coming home, mainly because of the great team and infrastructure we have at home so that Charlie can have her 24/7 one-to-one care and prevent any damage to her new grafts.
She also has outpatient rehab appointments at UVA.
All that being said, We believe that her return home is fast approaching; we don't have a date yet, but we are confident that she will return home soon; we are praying for that.
I am still waiting to hear from the UVA hand surgeon, I am sure he is busy, and soon I will hear from them.
During this afternoon storm, I stopped working and came upstairs to comfort our boys; they were a little scared of the lighting and thundering during the storm; it felt so good to be there for them.
Overall we had a good day; we are grateful for Charlie's progress, and we remain humbled by God's grace towards us.
Please continue to pray for us, and May God bless You.
Here is Charlie with her new haircut
André
July 23, 2022
Day 317 | JULY 24, 2022
Good evening, friends; today is day 317 of our new and fantastic life!
I tried to wake up at my usual time; however, my body decided to stay in bed, so I woke up at 9 am today!
I know my body needed the extra sleep, but it certainly changed the flow of my day.
When I got downstairs, Vovo had already fed the boys’ breakfast; I quickly ate my breakfast and took London outside to play, wanting to avoid the heat again.
The day went by fast today; between playing with the boys and helping my mom organize our closets, the day was busy.
I spoke with Charlie in the morning and afternoon; she had an almost uneventful day, but on our last video call, she revealed some upsetting news to me.
She had the nerve block placed in her left arm on Thursday, to which we expressed our concern since, over the weekend, there were no hand specialists or OT.
Well, our concerns become evident since no one came to see Charlie over the weekend, and to make matters worse, as of Saturday, her left arm was no longer “blocked,” we wondered if that was normal. Still, today a Nurse from the anesthesiology department came to look at Charlie's block. Upon inspection of her dress, Charlie noticed a look on her face, so She asked her to tell her what was wrong because Charlie knew something was wrong.
Charlie was told that the catheter for the block had come off, so there was no nerve block medicine being injected at the right place!! That explains why Charlie could use her left arm fully when it was supposed to be blocked, and she could not move it!
Charlie and I discussed and decided that tomorrow, Charlie will ask you have the block removed because she will not change the risk of nerve damage by redoing the league; they had their chance, and they chose to do the block on a Thursday when everyone knows that on the weekends, there is no therapy, they tried, and they failed, we also have decided to get a second opinion for her hands, so we are done with guesswork at VCU, we will treat her skin their and keep at it for now.
It is very frustrating when you trust doctors. They don't deliver what they are supposed to do just because they lack the interest in learning about your medical history or thinking about the execution of their orders; what we have learned during our many hospital procedures is to follow our instincts if you don't feel good about something, don't be afraid to stop or change your mind, part of being an effective advocate is to know your body, no doctor knows you better than yourself.
I am praying that no nerve damage is caused to Charlie's arm due to the failed nerve block.
I am hopeful that UVA doctors will be able to give us a positive second opinion.
Thank you for your continued support and prayers. I am beyond grateful to all of you!
May God Bless You!
André
July 22, 2022
Day 316 | JULY 23, 2022
Good evening, Friends. Today is day 316 of our new and fantastic life!
Today the boys and I were up early; I wanted to avoid the heat when we played outside.
It was great to see the interaction between London and Julien; London loves nature and worms, and Julien has not been exposed enough, so London did a good job showing Julien the worms, ants, and bugs.
By 11 am, we returned inside just on time for lunch.
The best part of the morning is that Charlie could see it all via video call.
The rest of our day was inside; we watched movies, played, and had a perfect day!
It is incredible to see how much baby Julien now interacts with Charlie over video; he knows that she can see him, it is so adorable, and it warms Charlie's heart.
Tomorrow, they will remove Charlie's catheter; putting her one step closer to discharge; she still has some more healing to do, but it is an important step.
We are so grateful for all the prayers, love, and support.
Today I felt accomplished as a father; I was able to focus 100% of my time on the boys, and what I noticed is that it is different from before the accident in that I am now present, I am not distracted or not paying attention, and let me tell you, it is so rewarding to see in our boy's eyes the joy and excitement.
I am grateful for God's gifts regarding my transformation; I am now a much better father and husband.
Have a good night, and May God Bless You!
André
July 20, 2022
Day 314 | JULY 21, 2022
Good evening, Friends; today is day 313 of our new and fantastic life!
Today my day started as usual, get the boys ready, brushed their teeth, fed them breakfast, and at 9 am, our Nanny arrived, and I could get to work.
Charlie and I talked this morning for a few minutes, and we were talking about how we wished the hand surgeon would come to see her; as we were talking, there entered Charlie's room, Dr. Hand Surgeon.
He was pleasant and objective; he started by telling Charlie that her left hand could benefit from a nerve block to allow the hand therapist to manipulate her hand to regain her range of motion. He also told Charlie that, sadly, her right hand he didn't see a safe way to perform surgery; he didn't think that surgery would be successful and it could cause more damage.
We were both in shock when he said that; how is that possible that surgery would not offer any improvement to her deformed right hand? He finished his consult.
When he left, Charlie and I just looked at each other, and we said, that is a lot to process; let's take some time and talk about it later.
I was a little sad and couldn’t concentrate much on work after that, so around 3 pm, I left to see Charlie.
When I arrived there, she had already gotten the block done on her left arm, and we started to talk about the Doctors opinion; we both agreed that if he were right, it would be devastating news, but before I accepted, I needed to have a second opinion, and I started my research for the best hand surgeons in the country.
I am praying to God that he will show me where to look, and I am trusting that we will find a surgeon that can help Charlie's hand; it is not easy to accept that she will lose the ability to use her dominant right hand, it is my duty as her advocate to find her the best possible chance to regain some of her mobility!
I will ask for your prayers; we need God’s comfort and wisdom.
Thank you, and have a good night.
André
