Let's start with our last clinic visit- which was another good report. So good, that she does not need to return until February!! We went from going every month, to 3 months! Avery remains on all of her meds and on the transplant list. I read last week that we are halfway through flu season, and we are so hopeful make it through with no major issues.
On December 12th we departed for Florida on Avery's MAKE A WISH TRIP! Yes, she was granted a wish through this amazing organization. Make A Wish grants wishes for critically ill children- they believe that one moment changes everything. And for Avery, it absolutely did!
After much discussion, she chose a trip to Disney World in Orlando, FL and most importantly, a visit to the Bippidi Bobbidi Boutique to have a princess makeover. She watched videos of the boutique on YouTube kids almost everyday while in the hospital. This entire process was initiated by the hospital's PICU social worker, and we were approved of a wish before we even left the hospital. Once our cardiology team gave the clearance that we could travel, the planning began! We had 2 wonderful volunteers work with us to make sure we had everything planned for Avery's dreams to come true. On the morning we left, we were picked up in a limo - and from the kids excitement over that, I knew this would be a trip to remember. Once we arrived at the airport, we had so many people there to cheer us on. It was an ambush at the gate, but it was so fun to have so many Make A Wish personnel there to make our send off so memorable! We stayed at Give Kids the World Village, which is a nonprofit resort only for families on wish type trips. Our visit included 3 days at the Disney theme parks and 2 days at Universal Studios. We squeezed in fun character meals, the Mickey's Very Merry Christmas Party, as well as a visit with Santa Clause! While at Give Kids the World, they had more character visits, parades, parties, unlimited ice cream, and the very special Castle of Miracles- where Avery will have a star on the ceiling as do all the other children who have visited. The boys would say their very favorite part of this trip was being able to ride all the rides without waiting in any lines. We were given special passes that allowed us access to the front of every line (including characters). Avery said it was the BEST WISH EVER! She enjoyed being the boss and making all of the decisions for her special trip. And of course, her visit to the Bippidy Boppidt Boutique was the major highlight. We all expected her to chose the Elsa or Aurora dress, but she chose to be Elena of Avalor - from the Disney Junior show. My favorite part was the love that everyone showed for my sweet girl. While watching the Very Merry Christmas parade at Magic Kingdom, many cast members and characters saw Avery's MAW sign and went out of their way to say hello to her. Santa from up atop his parade float, made a symbol of a heart and pointed to her. It was beyond magical.
We are so very thankful for Make A Wish Mid Atlantic and our cardiology team who made this trip possible for our family. We will truly never forget the experience.
After arriving home, we anxiously awaited the holidays with school programs and family visitors. This holiday was another reminder of the blessings God has given our family. We hope 2019 brings a year of continued health for our girl.
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Avery's favorite thing to do while she was in the hospital was trick or treat. That was what worked to get her out of bed and walking, and what she did every single day, sometimes twice. However, her version of trick or treating was to pass out candy to all the nurses, doctors, and staff. They all looked forward to their daily candy from Avery! So of course when Halloween came, she was beyond excited! Her costume of choice was Belle (and her dad as Beast) - from Beauty and the Beast. She will return to clinic later this month, and she has already said she wants to bring her candy to all of her friends in the hospital! XO
Avery had her regular clinic visit this past Monday. The one item we have been trending all along is her EF (ejection fraction), as shown in the echocardiogram. The result this time was the same number as last time, a 47. However, they discussed some new parameters that have improved, giving Avery an overall good report. She also has an EKG each visit, that captures the electrical activity of her heart at that moment in time. Since she is young and unable to communicate if her heart is ever feeling funny, the doctors decided that using a Holter monitor would be a good way of gathering more information on her current heart function on a daily basis. The monitor is a small wearable device that keeps track of her heart rhythm and records all of her heart beats. The monitor is a big sticker that she will wear for 48 hours and then we will take it off and put it in the mail. Pretty neat technology! She is very proud of her new accessory, and has told everyone that it is her magic button! It only took a little bribery, a new LOL doll, to convince her to wear it.
We return to clinic again in 1 month. Oh, and they did eliminate another medicine! YAY! Since she is no longer at risk for a blood clot, they have taken her off of the baby aspirin. 1 more down...only 5 more to go ;) XO
We go back to clinic on Monday. I will be anxious to see what they say as we approach fall. In case you haven't seen it, Avery's picture is featured in an article that recognizes the doctors and programs at Johns Hopkins Childrens - https://www.parents.com/health/doctors/10-best-childrens-hospitals/
But what it means in terms of Avery's heart is that her heart is no longer dilated!!!! That is huge y'all!!!!!! Her heart has gone from enlarged and round in shape, to a more normal upside down triangle. She will continue on all her meds, same amount and doses and she will go back to clinic again in one month with the hopes of continued progress. Based on her current function, our doctor said he would not accept a new heart for Avery at this time! (BEST. NEWS. EVER.) Therefore, her status on the transplant list is being moved down to a status 7- which is considered inactive due to change in condition. (There are 4 classifications for transplant, 1A, 1B, 2 and 7). We are thrilled to be making these little milestones of progress!
One of our doctors has said that the mean recovery time for children with myocarditis (who do not receive a transplant) is 9 months (up to 2 years). With Avery's continued progress, we are all hopeful that she may fully recover from this and keep her own heart. Again, this is something we NEVER thought possible, doctors included. It is truly a Miracle. "...with GOD all things are possible" -matthew 19:26
*Sorry for the delayed post. I had an eye doctor appointment yesterday and couldn't see straight for most of the day, therefore posting an update was impossible. :) XO
Monday we met with some key players on Avery's care team. We had an in-depth discussion on Avery's progress and what our options moving forward could be. These doctors have been amazing, always including us in on discussions, hearing our feelings, worries, and opinions. The outcome of this meeting resulted in a new game plan. We are moving back to the PICU, where we are going to attempt to wean Avery off her IV medications. If this is done successfully, the plan is to go home to wait for her new heart. She would be home on a number of oral meds and will have fairly regular appointments to check her progress. This new course comes with many pros and cons which we have struggled with over the last week. The biggest CON, is that her transplant status will be changed. She will no longer be at the top of the list as a 1A. Off the IV medication and out of the hospital, would move her to a status 2. This means that her wait will be considerably longer. However, the biggest PRO is that Avery is stable, and doing so well. It means her heart is responding to the meds and the rest of her body is not being negatively affected. Ultimately, we feel that this one PRO outweighs all of the CONS. We are all in agreement that the longer we can safely keep her own heart, the better.
I have no idea how long this process will take...or if it will even work. Your continued prayers mean everything. As we embark on this new course, I will try to give more frequent updates! XO
For visitors or mail, we are now located on 9 North in room 47. Our second room on this floor because while the first one was a beautiful corner suite, it was without a bed...which is kind of important for our situation!
Full mailing address in case you are interested is:
Johns Hopkins Children's Hospital
1800 Orleans St.
Bloomberg 9 North
Room 47 -Avery Doehne
Baltimore, MD 21287
Not like I am counting or anything ;) 45 days might not sound like much but it kinda feels like an eternity when your child is confined to a hospital room. However, today Avery got to go off the unit, out of the PICU, to a multipurpose gym area to play. She had so much fun she didn't want to leave. We did some bowling, t-ball, parachute, giant connect 4, soccer, and played a few board games. I think it was good for her soul to go somewhere different even for just a little while. She is definitely starting to get bored despite all the toys and goodies everyone has sent!
Since I last posted, her arrhythmias have definitely stopped happening as frequent. Yesterday she might have had 1 or 2 all day. Today her heart rate has been higher than it has been in awhile. If it's not one thing, it's another. Otherwise, we are still just waiting. Everyday we are one day closer to her new heart.
A week or so after we arrived they did genetic testing on Avery to see if there were any inherited DNA abnormalities that could be the cause of her heart failure. When we met with the genetic counselors we went through our family history- which there was nothing of significance. The test results would take a month, and we just got those results back. The test came back NEGATIVE- which means that they were unable to find a mutation capable of causing the disease. This result is not considered conclusive though, it is still possible that the technology used is not able to detect the abnormality. SO, basically we still do not have a definitive reason as to why Avery is in heart failure! They also advised us to have echocardiograms on everyone in our family. The boys had theirs done yesterday, and those results are not in yet. We continue to look for answers...XO
As of today, Avery is generally in good spirits. The toughest part of her day as a 4 year old is taking her oral medications and getting out of bed. She has several lines that are attached to her. She has a PICC line in her right bicep and an arterial line in her left wrist. She has 5 ECG leads attached to her chest to monitor her heart and she has a pulse oximeter on one of her fingers. At this point she is pretty stable as they are still gradually increasing medication amounts to therapeutic levels. Holding steady is good news.
Someone mentioned to me recently that I post all of the happy photos of Aves in the hospital. But I assure you, it is not all rainbows and sunshine. She is a typical 4 year old and acts like one. Her will is strong. Which is just the strength that is going to get her through this! She is tough and brave and I am so lucky to be her mommy.
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