Andre Xavier's Blog, page 9

Day 313 | JULY 20, 2022

Good evening, friends. Today is day 313 of our new and fantastic life.

Today was a good day!

Right after breakfast, I called Charlie. She had a good night and did well without the lidocaine drip, and around 10 am, they took her for her Road Show procedure; she called me around 12:30p to tell me that she was back in her room.

She was very sleepy after the procedure, so I told her to get some rest, and we would talk later.

Around 4 pm, she called and shared with me her surgeon report; he said that her grafts look spectacular! The only ones not so well are the two elbows; sadly, elbows are very difficult to heal, he said.

Starting tomorrow, Charlie will receive daily wound care, and as soon as she is healed, he will transfer her to Sheltering Arms once again, but that is still a few weeks away.

Her Doctor also was very impressed with Charlie's incredible healing of her scalp; he is genuinely interested in understanding how she can heal so fast; he will be taking a sample of her tissue for further research! I have told Charlie that I have no doubts that a few medical papers will be written about her case, and I am very interested in reading those because I want to see how much science can explain a true miracle.

Charlie is in good spirits; her pain is under control; she also learned that they had to use extra sedatives to keep her under during the procedure, which explains why she was so sleepy when she returned to her room.

I want to thank the many of you who donated blood today! It is so inspiring to see the good in action; your blood donations will save lives! Thank you for doing it in honor of Charlie! #pintsforcharlie

Thank you for your prayers, support, and generosity!

Tonight, I will start to write the last chapter of our book! It is still surreal to me that I became an author; I would never imagine it would be possible before the accident, but here we are.

How can you be so beautiful, Charlie Anne?! No make-up! Minutes out of surgery! I love you!

Thank you!

May God Bless You!

André

Day 312 | JULY 19, 2022

Good evening, Friends, today is day 312 of our new and amazing life!

I am starting to get into the new routine of having our Nanny taking over the kids at 9am.

I really want to Thank my mother (Vovo), she has been an invisible support, she helps me with the boys, cooks, clean, and iron our clothes, and last night, she stayed up all night with poor baby Julien, he is fighting a cold, and didn’t sleep at all.

She didn’t think twice about getting up and when I asked her if I could help, she said, yes go back to bed, you have to work tomorrow!

I am so blessed to have such examples of selflessness and grace from my mother and Charlie, I thank God every day for them!

She was able to get some well-deserved rest since the nanny took the boys on a fun adventure today!

Charlie had a good day, she is mentally preparing for tomorrow's “Road Show”, the procedure where her surgeon inspects the grafts and we are praying that they are all taken and starting to heal, and we also pray that they are infection free.

There is a lot that needs to happen, and if all goes well, Charlie will start the daily wound care and her way into healing!

Charlie is also taking care of her mind; she has now found a great therapist and she is so happy! I have prayed so much for Charlie’s mental strength! And I am so happy that she has found a great therapist!

Here is something amazing that our group of mom friends have done! They learned that Charlie needed blood, they tried to organize a blood drive to get blood directly to Charlie, but we quickly realized that it takes some time to organize a blood drive, so when will they decide to do it?

They decided to create an awesome marketing campaign, and they are inspiring people to donate blood to honor Charlie’s selfless act, when she was told that she needed blood, she also learned about a shortage of blood, so she declined her transfusion, because she knew she would get blood at the OR in a couple days, and she did that, she knew someone also would need that blood more than what she did!

Tonight, I will kindly ask each and every one of you to be part of this awesome cause. Now we want to help our communities, no matter where in the world you live! You can go to your local blood bank or drive and donate in honor of Charlie Anne, and I will ask that you post a picture and use the hashtag #pintsforcharlie! Our goal is to make this go viral, and maybe just maybe, we can help save lives with our blood!

Please Share this image on your social media pages, and be sure to use #pintsforcharlie, you can go to any blood bank or drive in your own community! Together we can raise thousands of #bloodpints!

Thank you for being generous, thank you for your love and support and thank you for giving back with us!

May God Bless You!

André

Day 311 | JULY 18, 2022

Good evening, Friends, today is day 311 of our new and amazing life!

Today I woke up and got the boys downstairs for breakfast and we needed to be on time today, since our new Nanny started today

We are so grateful and excited for our Nanny, right on time she arrived, and both boys went to open the door and they had a fantastic first day! We are so happy to hopefully have found our permanent Nanny!

The boys were out of the house by 10am, so Vovo could have some time to do whatever she wanted , she needed and deserved the help with the boys!

I had a busy day at work, but I really wanted to go and see Charlie today. Normally I don’t go on Mondays, since it is a very busy day with work, but today I made sure to go.

I arrived at VCU around 6:30p, and Charlie was so happy to see me , she had a good day, she received the visit of her hand therapist, and her therapist was very sad to see that Charlie’s left hand is starting to lose its range, and she was also very disappointed that the hand surgeon had not talked with Charlie yet!

I am hoping the hand therapist can get the hand surgeon moving as well.

Charlie also received the visit of the pain management team, and they are starting to cut down some of her pain meds, since she is experiencing less pain.

This coming Wednesday, Charlie will go on the Road Show procedure, where she will undergo general anesthesia and her surgeon will assess her graft’s and after that they will start the daily wound care.

Now, we just have to wait for Charlie to heal. We will ask for your continued prayers, for her healing and to remain free of infection.

This morning Charlie sent me this picture. She woke up at 6am, and the sky looked beautiful outside of her window, and she managed to snap a picture with the help of Siri .

This is the picture , after seeing the picture, I decided that today I had to visit Charlie, because I can only imagine how lonely she feels staying in bed, without moving, and unable to feed herself, and I am so grateful for going, we had a nice dinner together, and I am so honored to be there to feed her dinner.

Thank you for your continued support!

May God Bless You!

André

Day 310 | JULY 17, 2022

Good evening, Friends, today is day 310 of our new and amazing life!

Last night I went to bed with a massive headache, and this morning I still had it, so around 9am I dragged myself out of bed, ate breakfast, helped my mom with the boys’ breakfast, took headache medication and went back to bed until noon!

Sadly, I devoted my entire morning to healing my headache, and I am good with what I did because it worked!

I want to apologize for my short journal entry last night, I could barely open my eyes with the pain.

So, before I talk about today, let’s continue with last night's post, since so much more happened.

During my visit with Charlie, her surgeon stopped by and gave us a very detailed report of her surgery, he explained the trouble they had in getting her breathing tube in, he said they observed a narrowing in her tracheae, and after 1 hour trying, they succeeded, but he will Charlie checked this week and see what May have caused such narrowing, since it was not there last week. He also mentioned that they had to change her central line, from her left side of her neck, to the right side, because the blood cultures took from the left line, presented some sort of bacterial infection, but they were unable to access her right side due to some sort of blockage, so they had to go into her groin region, but he also said, he wants to get her off the central line as soon as possible, since it is just a matter of time for that line become a source of infection.

Besides all the challenges, he was able to not only cover the open wounds, but he also grafted two areas that the skin was very fragile, so he did an amazing job!

He also added two vacuum pumps to keep the grafts on her buttocks dry and free of moisture, providing the best possible healing environment.

Now for future medical procedures, he said that Charlie will be able to get some laser treatments on her neck, to improve the range of motion and also the appearance of her scars, Charlie is really excited with the laser treatments! It is very impressive how beneficial it can be!

She is also waiting for a visit from the hand surgeon, to discuss what kind of surgery he will perform on her right hand, and sometime soon the block and manipulation of her left hand.

Yes, a lot is going to be happening, but overall, we have good news!

Today Charlie was in good spirits, her pain level continued to get better, and she enjoyed seeing the boys playing outside for a little while today. She also took advantage and got caught up with her prayers and meditation.

Tonight, after dinner, Charlie is going to distract herself with her TV shows, and I will do the same, just a little distraction after a fun day with the boys.

I also want to encourage all the new friends to please take a look at our blog, https://www.cheeringoncharlie.com/.

And if you haven’t done so yet, still time to reserve your book at the Pre-sale price!

Thank you for all your prayers, love and support!

Keep the cards coming, Charlie loves to see the cards and hear the positive messages, here is the address in case you would like to send a card:

Att: Charlie Anne Xavier.

Mailing

Evans-Haynes Burn Center

Critical Care Hospital, 8th Floor

1213 E. Clay St.

Richmond, VA 23298

Thank you so very much!

May God bless You!

André

I asked Charlie to send me a selfie for tonight’s post:) she just looks so cute with her head wrapped

Day 309 | JULY 16, 2022

Good evening, Friends, today is day 309 of our new and amazing life!

Today I was able to stay in bed just a little longer, by 8am I was up.

The boys were downstairs with VoVo, and we had breakfast and called Charlie together.

I had to prep London before I showed Charlie on the screen, I told him that mommy had surgery and her head had bandage on, when he saw her, he just smiled and talked with her like he always does, being funny

Baby Julien also smiled at mommy, I guess the boys liked Charlie’s head bandages.

Our neighbors were kind enough to take London for a play date, and I took advantage of that and took VoVo and Julien for a quick trip to Costco.

We are back by lunch time, I normally don’t visit Charlie on the weekends, but today I could see that she really wanted me to come, she didn’t say it, but I could sense, my mom also told me that I should go and see her, especially since she can’t feed herself, she prefers that I feed her, vs anyone also.

So, there I went, I was so happy to see Charlie today. She was in much better spirits, she is still in pain, but she is getting a little better. We talked and her doctor came, he gave us the rundown of the surgery and he was very pleased with the outcome.

We ordered some Italian food, and Charlie ate very well. It was great to see her eating well after surgery.

Charlie is so grateful for your prayers.

Thank you for your cards and messages of support, we read a few cards that arrived this week.

Have a good night and May God Bless You!

André

Day 308 | JULY 15, 2022

Good evening, Friends, today is day 308 of our new and amazing life!

I was up at my normal time, I arrived late last night past midnight.

I texted Charlie early around 7:20am, and she called me back around 7:30am, she was a little better than last night, she was receiving blood and I am sure that helped!

We talked for a few minutes, she talked with London, he was super adorable, today was his last summer camp, we finished breakfast and we even took mommy on the card with us to drop London off at his school, on the video call.

This kind of normalcy helps Charlie to distract from her pain. She was calm, and in overall good spirits, but I knew she was tired. This return trip to repair a few areas of her grafts has become much more complex, riskier and painful!

Somehow, we both thought that she would come in and have 2 maybe surgery and within few weeks back home, well so far, she has had 2 surgeries, 4 procedures and few more ahead, it is being hard for us to adjust to this reality, but we have to and we also know that our expectations is the cause of some of the frustration and disappointments, we created our own mental suffering one may say.

Today’s surgery was a big one, 6 maybe 7 hours long! They harvested donor skin and used it as autografts. Earlier this week her surgeon said that he would cover her openings on her knees, ankles and feet, those were the wounds that had a good granular bed, but the buttocks and elbows would need more time to develop a good wound base.

Well, we had a pleasant surprise, her surgeon was able to cover all of her open wounds with the autografts from the back of her scalp, that is incredible news, since now hopefully she will ensure one less graft surgery! I am so grateful that they managed to cover all in one surgery!

You see, we did suffer yesterday, and now we are down to one surgery!

In addition to the painful skin grafts procedure, Charlie was also going to endure a block of her left arm and hand (Nerve blocks for shoulder, arm and hand surgery can be made to last up to 24 hours. ) the hand surgeon will manipulate Charlie’s elbow, arm and hand in hopes to regain some range of motion, however due to the difficulty they had when placing her breathing tube, and there was also an issue with her central line placement on her neck, so they decided to place her central line on her groin, she will have a foley and will be bed ridden until her grafts are healed.

Her surgeon told me that she would experience pain and discomfort on her tracheae, since there was the issue with the tube placement.

I waited from 5:30pm until 9:30pm to see her, I am glad that I was able to remain calm, and not too worried, I am glad that I was able to speak with her doctor directly, that made me at ease some, but until I got to see her, my heart was tight.

When I first arrived, I waited in the same area I waited when Charlie first arrived at VCU on the day of the accident, and to be back there it did bring me some memories, but this time, I didn’t feel fear, I felt like I was back in a memory, but this time I had no fear.

Charlie arrived at her room at 9:30p, she was alert, but heavily medicated, we chatted for few minutes, until I asked her what she would like for dinner, she asked for the Broccoli cheddar mac and cheese from Panera, I hurry down to the hospital Panera and got her dinner, I went back up and feed her dinner, Charlie was hungry! Poor thing, her last meal was yesterday at 8pm!

After Dinner, we sat down to watch Access Hollywood. Tonight, they aired the interview they did with Charlie, they did a very good job with the story. We are very grateful to them for their kindness in telling Charlie's story in a positive light.

Today we truly had a day in the rollercoaster, up and down we went.

I am so grateful to you! Your prayers and support have been instrumental in Charlie's recovery.

Have a Good Night and May God Bless You!

André

Day 307 | JULY 14, 2022

Good evening, Friends, today is day 307 of our new and amazing life.

This morning I woke up and I was very anxious, since last night Charlie was not feeling too well, they started her antibiotics, and she had surgery scheduled for today, I felt the need to know what was going on early on.

This is the problem with anxiety. It comes from the need of desire to control the future and situations outside of our control. Even though I know this, I just couldn’t help myself, the issue is when I am anxious, it is hard to focus and even eat!

Around 8am, I called Charlie and she didn’t pick up, so I thought she could have gone to the OR, around 8:30a she calls me back, no OR yet, and her head is about to explode, she didn’t have any update to give me about her possible infection, only that her doctor does think she has some sort of infection and has started the antibiotics, but she is also anemic and in need to blood.

After talking with Charlie, I started my day. I actually had a good day at work, and around 11am, I called to check with Charlie’s nurse but she was not available.

I messaged Charlie and she responded, her surgery was moved to tomorrow, due to the fact the OR was full.

I guess it was a good thing so she could rest and give her body a chance to fight this infection.

Charlie pretty much slept all day. Around 4:30pm, she called and said she was feeling a little better and she would like to see me today.

As I was about to head to Richmond, this big rain storm came by, so I decided to wait until the heavy rain passed, and by 5:30pm I headed to Richmond.

Charlie was very happy to see me and I was also happy to see her, she did feel better and was able to eat dinner that I brought in, we decided to watch a movie to east our minds of the reality of our situation, tonight’s movie was “Bliss” on Amazon Prime, it was entertaining.

After the movie, Charlie and I talked and Charlie was honest and told how hard the last two days have been, and how she felt scared last night, she felt very sick, she is also concerned about tomorrow’s surgery, it is a big and painful surgery, I tried to give her some words of encouragement, but moments like tonight, being silent is the best support one can give.

As I leave VCU today, my heart is aching. I am suffering with Charlie; it is not easy and it is not fair. I pray that God can console her heart, because she is suffering.

Thank you for your prayers and generosity, we are so grateful for you!

Tomorrow will be a difficult day; I am sure I will be anxious until she is back into her room from the OR.

Please pray for a successful surgery tomorrow and for Charlie’s to feel God's comfort.

Have a Good night and May God Bless You!

André

Day 306 | JULY 13, 2022

Good evening, Friends, today is day 306 of our new and amazing life!

Today is the day that I will need and ask for your help and prayers.

Our mornings are becoming consistent, London is doing a great Job waking up early to school, and Baby Julien slept in after going to bed late yesterday.

The day went by very fast today, mainly because I was worried about Charlie, not to the point of being unable to work, but to the point of going down the rabbit hole of medical research.

As of this afternoon, they still trying to find out what was causing so much discomfort and pain to Charlie, they finally announced that Charlie is extremely Anemic, it is expected for burn survivors to Anemic, however the many procedures in the last two weeks, have cause her to lost a good amount of blood.

VCU is facing a shortage of blood, but they do prioritize the burn unit, so her doctor order blood for Charlie to help with her symptoms, he also told Charlie that tomorrow during her surgery, they would give her more blood, so Charlie being Charlie, always thinking about others, decided that she would hold off on today's blood and she would only get blood tomorrow, since she knew of the shortage and wanted to make that blood available for someone in need.

Well, her symptoms got worse, and by 7pm she was feeling very clammy, with a fever and an elevated heart rate. Based on her symptoms, her doctors also decided to start her on a broad-spectrum antibiotic.

Charlie had a good morning before she started to feel too bad. She pushed very hard during her PT session, and she was able to take a few steps in a walker, she was so proud of that achievement!! You go Charlie!

Right now, Charlie has a massive headache and her whole-body aches. I am praying that she feels some relief soon, the antibiotics just start, and I am hopeful that in a few hours she will start some sort of relief.

Tomorrow surgery will be a big one, they will remove donor skin from her upper back and possible her head, if they use her scalp skin they will shave her head, but is not for sure, they will focus in grafting her right knee, both ankles and maybe her elbows, her buttocks will have to wait until the next surgery.

But what will be possible even more painful, is the manipulation of her right arm, they will try to extend her arm and force some range of motion, she will lose the use of her right arm for about a week and the hope is to regain some range of motion on the arm and maybe her right hand, I am praying that Charlie is able to tolerate the pain after the surgery.

I have been praying a lot today, Charlie needs God's mercy and strength, she is dealing with a lot of issues and all at the same time, she is strong, but she has been put to the test once again.

Due to the blood shortage at VCU, our amazing group of moms are working to put together a blood drive, to help Charlie but also VCU hospital in general, Charlie is a O- the universal Donor, but she can only receive O-.

I would like to ask kindly if you could donate blood, we would greatly appreciate it and we would help not only Charlie, but a lot of people. I will share the details of the blood drive once we have them in the next 48h.

I am also asking for your prayers, Charlie needs all of your love and prayers, tomorrow will be a very difficult day in terms of pain.

Thank you for your generosity and support.

May God Bless You!

André

Day 305 | JULY 12, 2022

Good evening, Friends, today is day 305 of our new and amazing life!

Today our morning started as usual, and around 7:50am, I didn't hear from Charlie, so I called and she answered.

She was getting ready for her procedure at the roadshow, at that time, they were suspecting that she could have COVID, the test was still pending, Charlie was feeling very sleepy and in pain.

The doctors are working with the possibility of some sort of infection, they drew labs this morning, and they showed a normal panel, nothing to indicate an infection.

I went to work and had a productive morning. Around lunch time, I called to check on Charlie. She had returned from her procedure and was in pain as usual, but the doctors inspected her wounds and allografts and all looked good, no sign of topical infection.

By that time her COVID test was back and it was negative! It was a relief because she was positive, she would be in isolation.

This afternoon once one of our mom friends gave us a huge break, she picked up both boys and took them for a fun afternoon.

VoVo needed the break, she was able to rest, her vertigo still affecting her on and off.

When the boys got back around 6pm, they were happy! They had so much fun!

I took Julien to take a bath, and after feeding both boys dinner, I got London to take a shower.

Today I was the one putting Julien to bed, and boy he didn’t go down easy, I rocked him to sleep from 8pm until 9:40pm, he would refuse to go to his crib, every time I tried, he would cry.

I am drained, it took every ounce of patience I have to keep rocking him for almost 2 hours.

He finally went down after so many tries.

We are still waiting to find out what is affecting Charlie, she is extremely tired, cold and hot, and super aches.

The doctors are holding off on the antibiotics until they can find more evidence of an actual infection, but for now, we don’t have an answer.

It is frustrating, but I am doing my best to not become frustrated with myself. Tomorrow is a new day and we will know more than we did today.

I will pray to God that Charlie will feel better by tomorrow.

Today the hand surgeon took a look at Charlie’s hands during the roadshow, and tomorrow he will come by to talk with Charlie, let’s see what he has to tell us.

We will pray for good options for her hands.

Thank you for your support, and a reminder to order your copy of our book.

Have a good night and God May bless you!

André

Day 304 | JULY 11, 2022

Good evening, Friends, today is day 304 of our new and amazing life!

Today I started my day early as usual and I had a busy schedule ahead of me.

London was back at his summer camp at school, he woke up by himself and got dressed, he is growing up so fast.

Baby Julien woke up shortly after and we all came down for breakfast.

I called Charlie and she was happy to see the boys play before I had to take London to school.

After dropping London at school, I started my busy work schedule.

Right around noon, I came up for Lunch since I had a video call at 1pm.

But when I got upstairs, my mother was not feeling well, she had vertigo and she told me that she needed to lay down because she was extremely dizzy and nauseated.

I knew at that very moment my work day had to be canceled, and to makes matters worse, Charlie called and she was also not feeling too good, she was feeling extremely tired and she was really looking forward to our visit, but I had to tell her the not so good news, I couldn’t go to visit Charlie today!

Yes, not only did I have to stop working at noon, I also could not visit Charlie, and I was devastated. Charlie needed me and my boys also needed me to care for them, since VoVo had to get rest and hopefully feel better.

I will be honest, today was not a day I could just not work, I actually ended up making a big mistake since I was trying to work and care for the boys.

By 3pm, I just knew I couldn’t do both specifically after trying and making costly mistakes.

Earlier I had mix feelings, I was upset that I was not able to work, I was worried about my mom, I was heartbroken for not being able to visit Charlie when she really wanted to see me, it has been 3 days since I visited Charlie, but I am also grateful that I am able to care for the boys when VoVo is sick and that she can rest a little, so a mix of bad and good feelings, and I did pray that my mom felt better.

Well, God is always there when we need him and me did feel better, so around 4pm my mom came downstairs and was well enough to take care of the boys while I visited Charlie, so before I left, I gave both boys a bath, that way VoVo just had to feed them dinner and do bed time.

I left at 5pm to see Charlie, and I was so happy, my heart was no longer broken, I was on my way to see my beautiful wife.

I encountered some heavy traffic on 64, but made my way safely to VCU. When I got there, I asked Charlie what she wanted for dinner. She asked for soup from Panera.

When I got there, Charlie was not feeling good. She was very sleepy, cold to the point of shivering, and burning up hot minutes later, I learned that Charlie has not been feeling like herself all day!

I was not happy to see her that way, especially when I had the initial suspicion of her being in withdrawal, but I am no doctor, but I am her Advocate.

I went to work, it has been a while since I had to advocate for Charlie, but I felt that this deserved my full and undivided attention, so I went to the nursing station and started to ask questions to her day and evening nurses. They were doing the shift change.

I didn’t expect that a nurse would have the answers to our questions, but I wanted to make sure they knew what was happening with Charlie. I asked if they could page the pain management team.

They sent us a PA, she did the usual questions about her symptoms, and ordered a COVID test.

I am praying that Charlie does not have any serious infection, it is too early to know, but tomorrow we will know the result of her Covid test.

Charlie is very uncomfortable, tomorrow she will undergo a procedure, called “Road Show” , that is where her surgeon will clean and inspect her allografts. They will take some cultures of her wounds to also check to see if there is any infection in there.

Well, tonight my mind is under attack from my old not so friend, Fear.

But guess what? Fear, this is not our first or second encounter with a possible infection, so go back into your dark corner, and let me welcome my friend, hope, and faith.

Tonight, I am choosing to remain positive and pray, I am asking God that Charlie remains infection free, or if she has an infection, it is something treatable.

I will not suffer and I will not fear, I know that God will protect Charlie and I also know that her doctors will do their best to find out what is happening to her.

Tonight, I am posting from the VCU parking garage, it is 10:20 pm and I am just now leaving VCU.

I kindly ask you for your prayers, please ask God to keep Charlie infection free, and that her doctors are able to find and treat what May causing her discomfort.

Tomorrow we will see what the day will bring us.

Have a good night, and thank you for the several cards that you have sent, Charlie really loves to read them.

May God Bless You!

André