Vanderbilt Update
As I shared, we needed some time to simply be with the details and process. One of the ways we process is through art.
So art is was on Thursday! Art, processing, and sweet conversations happened on Thursday. It was greatly needed for our mental health.
Chloe has been struggling immensely with her health. She has had gastric issues that have become impossible to deal with. She could sleep almost 24 hours a day. I don’t think she would ever be rested.
At her last gastroenterologist appointment, we were presented with two options. One, we could try putting a baclofen pump in and taking her off the oral muscle relaxers she is taking. Possibly, the drugs are playing a part in her gastric issues and extreme fatigue. Possibly not. There is no way to know for sure. Secondly, we could consider surgically removing part of her large intestine to help with digestive issues.
After discussing, we chose the baclofen pump route. We felt that was the least invasive option. After learning all the details, I’m not so sure on the idea of least invasive. I think either option is invasive.
So Wednesday at Vanderbilt, we were educated, we asked many questions, and we received much information.
Vanderbilt Process
–On January 25, Chloe will have a cardiac MRI. On January 26, we will meet with the heart doctor for results. He will need to clear her for surgery.
–We don’t have a date yet, but probably looking at first of March due to our schedules, she will be admitted on a Sunday night. On Monday morning, she will have a trial dose. They will assess how much baclofen she needs and they will inject it into the spinal column. Of course, this brings the risk of spinal headaches that are often associated with spinal taps. The date will also depend on covid limitations and staff limitations at Vanderbilt.
–If there are no negative side effects, a week later we will return to Vanderbilt where Chloe will have surgery.
–They will make an incision in her abdomen and insert the baclofen pump. It’s no little piece of equipment.
–The surgeon will attach a catheter tube to this device and run it around her side and back and into her spinal column. They will make an incision on her back and permanently attach the catheter in the spinal cord. Once again, spinal headaches are common, so there could be yet another surgery for a blood patch to stop the leaking spinal fluid.
This surgery will come with a 6 to 8 week recovery time period. Not only will she be healing from surgery, it will also be a delicate balance to deliver the right amount of medication at the right times. It may take several trips to Vanderbilt to get it perfect.
–Depending on how much medication she will have, her pump will have to be refilled every three to six months and will be done in the office.
–Every six years, the pump will have to be replaced so that means surgery every six years.
Least invasive? It indeed is, but it doesn’t feel like it.
Surgery Results
This is the bummer. We have no guarantees that this is going to help the gastro issues. It is just a possible solution and we may have to turn around a few months later and have another surgery. Prayerfully, that will not be the case. We hold hope that this is going to increase Chloe’s quality of life in multiple ways.
Chloe is scared, not only of the process, but the results. What if the extreme fatigue remains? That would mean her muscle disease is the cause of the fatigue, and it will never be any better. She doesn’t want that to be the answer.
Therefore in the weeks to come, we will continue to talk, process and possibly do more art!
Family Effects
This is not a little thing for any of us. Obviously, me needing to be away with her creates a need for more help at home with Zine. I have a sitter, who has been absolutely awesome. She has been out two weeks now with covid. Praying she feels better and is back to work soon. I’m always a little iffy as to whether caregivers will come back after this length of time. I may have had that experience more than once with my parents caregivers.
Sunday I have a possible new sitter coming over to visit. I’m super excited because he’s a male! Please join with us in praying that we will fall in love with him, and he will become an extension of our family.
Not to mention all the gym practices that must be coordinated in my absence. I am thankful that God has given me a sweet carpool crew that are super helpful in picking up the slack when I’m unavailable.
We have to get everything done and healed because we have a big wedding in May. I still can’t believe I am old enough to have a kid getting married! However, I am so excited for him and Sarah to begin their life together! Looking at my schedule, May will be here before I turn around!
Clinical Trial
In the middle of everything else, I received an email a month or so ago from a doctor at University of Florida. They are beginning clinical trials studying manifesting carriers of DMD. After numerous emails and a long phone conversation with the doctor, Chloe decided she would participate. She and I will be traveling to Gainesville, FL, Feb. 10 – 12. We will fly in on the 10th. She will have multiple MRIs and physical evaluations on the 11th. Our return flight home is the morning of the 12th.
We are excited that they are studying manifesting carriers. 20 years ago when Chloe was diagnosed, they told us girls didn’t get DMD. Interesting fact, we now know two other girls in Huntsville that have same diagnosis. While this research may never help Chloe in the long run, without a doubt, it will help some young lady in the future. However, we look forward to being on the inside of what their research is revealing.
Gym Meets
It is gymnastics meet season. I will be out multiple weekends over the next couple of months with Krisann and gym meets. It will be sweet time for the two of us, but once again creates a need for more help at my home with Zine. It also creates some stress on my side because my husband won’t be driving us places or attending these meets. Can I just say, I’m getting old as I do not see well driving at night anymore. That’s a limitation as we plan for these meets.
Krisann is excited to compete, and I am excited for her. Gymnastics is definitely her thing, and her time at the gym has been super helpful for her insecurities and anxiety. She also has quite a social circle from the gym. Her phone is constantly buzzing with gym chat messages. I love these connections for her!
Life’s Not Boring
Life is definitely not boring over here. The calendar is overflowing, and the anxiety is heightened at times. But if you look at the faces in these pictures, you will know there is much joy and contentment amidst the overflowing and stress.
Our Constant Prayer
Since Chloe was a baby and then with Zine’s diagnosis, we have prayed that we would be a minister of God’s peace, salvation, and love in every doctor’s office and hospital we visit. God has given us so many opportunities to share our faith and encourage those caring for us. As we enter this season with Chloe, we continue to pray that God would use us in the lives of medical staff in Florida and Vanderbilt. Join us in praying that although we are human and we have emotions, that despite our humanness, God would use us in mighty ways in other lives.
