I who was born June 17, 1988 with several birth defects that affected the mid-line of my body known as VACTER syndrome. Each letter represents a different part of the anatomy and of the five letters, I have four of the anomalies.
In my early years of life, I had four bowel surgeries, tracheal surgery, four open heart surgeries, and over 10 other heart related procedures.
October 13, 2020
As the saying goes, change is inevitable and so much has changed since my last update 10 days ago. The trach that Ross had to get due to a lung infection and fluid in/around his lungs was downsized where he could talk but still couldn’t eat. That changed quickly and last Thursday night–October 8th, the trach was taken out and miraculously Ross was able to start eating after a full month of no food. He passed his swallow test and he was thrilled. His first meal was spaghetti bolognaise followed by meatloaf. Yes all of this in one day, but later he said he may have made a bad decision to eat so much because his stomach really hurt. It was ok because he had the biggest smile on his face.
Then on Friday, October 9th, Ross was released from the ICU to the step down unit where it was much quieter and Ross thought he would get more sleep. Sleep is one of those things that hospitals don’t like you to get and although it definitely is quieter, someone is constantly in and out of his room for blood draws, monitors beeping and IV’s needing to be changed. Ross has gained some of his strength back and is walking more and handling daily care functions himself. He said the other day that he feels like a computer that was just rebooted and he is trying to figure everything out and his new norms. As Ross continued to progress over the weekend, the conversation quickly started about releasing Ross from the hospital later this week.
Ross and I are both so excited but also really nervous. We started learning about the 19 medications he will be on when he leaves the hospital as well as the physical and occupational therapy he will receive after he is released. He will need to be seen in the outpatient clinic on Mondays and Thursdays for a series of tests and lots of blood work. This routine will last about 3 months depending on how he is doing and then hopefully go to bi-weekly visits. They also said not to be surprised if he has to be readmitted for a couple of days here and there due to fluid retention or adjustments of his medication as recovering from transplant is very tricky.
We have had several education sessions and met with the pharmacists learning about his medication do’s and don’ts. We are learning about food restrictions and food prep precautions we will need to take. One of the restrictions is that he can’t garden for at least 6 months and can’t have fresh flowers or plants because of the bacteria in plants/soil. On the food front, he is really disappointed he won’t be able to have lox and won’t be able to have any meat that isn’t fully cooked through so there goes the steak medium rare he would normally love. On the bright side, he can still have small quantities of red meat as long as there is no pink in the center. Medication costs for this first six months will be about $1,000 per month and as more medications are slowly weaned off in the 2nd six months, we hope to get some of the costs down. We are so thankful that we did some fundraising before transplant and COVID as those funds will help offset these costs and the costs of all of the co-pays related to the outpatient visits he will have in the first 6 – 12 months post transplant.
So much is happening and so very quickly. Later today (Tuesday), he is having a heart biopsy which is something that is normally done weekly for the first one to two months and then every other week for awhile and then monthly, then every three months, etc. The biopsy is to check for rejection so they can adjust his medications proactively. Tomorrow we have more education sessions and I am getting the apartment ready for him to come home. His new bed is freshly made, I found a big pot to make soups and stews which are some of his favorites and I have to go food shopping tomorrow night or Thursday morning to get ready for him to be released. That’s the other thing that is crazy about hospitals, they say discharge is at 11 am; however, who knows when he will actually be discharged. It could be 8 pm at night.
Change is the word of the week but despite our nervousness, Ross can’t wait to leave the hospital and get some good sleep. A shower is also something he can’t wait for and I ordered a shower chair so he feels more secure as he gains his strength back. I’m so looking forward to having my boy “home” so I can take care of him and help him gain his strength back and the almost 30 lbs he lost in the last 4 weeks.
We have received so many cards to the hospital and to the apartment, and we have read each and everyone and can’t thank you enough for all of the love and support. Your text messages mean so much to me and there are no words to express my gratitude for the financial support to help get the apartment all settled and ready for Ross to come “home”. We plan on staying in California for at least another 6 months depending on how Ross does. Luckily that means missing out on the Delaware winter and the cold! Our world will stay pretty small as the apartment is less than a mile from the hospital but the weather here is beautiful and we hope we will get to go outside and enjoy it along with walks on the beach while staying safe!
I’m trying not to get my hopes too high that he will definitely get out on Thursday as things change so quickly and it could get pushed off a day or two! Please continue to keep Ross and me in your prayers as I know all of those prayers from all over helped us get to this point! Love to all of you! ❤️ Donna & Ross
September 14, 2020
The two pictures I just added was one of Ross, Glenn and Skyler the night Ross was taken down to the OR for his organs. Skyler who is also waiting for a heart/liver is to the left and Glenn is to the right of Ross. The 2nd picture is of Ross with what he called his “porn stash”. I trimmed his beard but didn’t do a good job at all. There was just a few holes here and there, so he shaved on the beard and kept the stash!
Photo Galleries (4)
November 12, 2020
Hoping your recovery is going smoothly
October 14, 2020
Keep on fighting Ross
October 2, 2020
We love you Ross - hope you love the baseball!!!
September 24, 2020
I am cheering and praying for you each day! May your angels protect and heal you!