An Anniversary to Remember

Recently, the three of us have been traveling back and forth to Johns Hopkins Hospital to work with some exceptional doctors, hoping they will help our Baby Girl. We were overjoyed when we thought they had found another piece to Jayde-Rhiannon's POTS puzzle. Instead of a helpful puzzle piece, her doctors found two other non-related medical issues that require immediate attention. The first is Superior mesenteric artery syndrome (SMAS). The second is Nutcracker Syndrome, which is a renal vein compression between her aorta and her abdomen. It is believed Jayde was born with these medical issues, and despite all my pushing (and you know I can push), her doctors refused to look outside the box. The incredible miracle is that she has survived sixteen years without worse issues, and if you know what she has been existing with, then you know her journey has not been easy. 

The SMA syndrome is causing severe abdominal pain, nausea, and vomiting...along with several other symptoms. When she does manage to eat a meal, they are small. She has discovered a soft or liquid diet works best. For months, I was concerned because she seemed to be surviving off Gatorade, oatmeal, carnation breakfast, ice cream, and chicken noodle soup. However, it was this self-modified diet that has kept her out of the hospital for the past year. Her SMA is severely compressed, which is causing an obstruction. Her primary surgeon, Dr. Jelin, will perform a bypass to alleviate the effects of the compression, allowing her food to properly digest. This portion of the surgery will take three or more hours. She will wake with a feeding tube in her nose, which will stay in place for at least the remainder of her hospital stay.

We celebrated our 20th anniversary a few days ago by taking Jayde to visit Dr. Jelin. Throughout this journey, we have quickly learned that these illnesses do not care what milestone or any other special day you are celebrating. They are relentless and ever-present. Per Dr. Jelin's direction, we need to spend the next several weeks building Jayde's nutrition and vitamin levels to improve recovery. I laughed when he told us Jayde needs to consume ice cream, soups, oatmeal, protein drinks, soft fruit, etc. When he finished his important instructions, I told him, "That is what she has survived on for most of her life." We saw a light in his eyes, "That is how she has flown under the radar for this long. Well, keep it up."

On June 13, we will meet with her Vascular surgeon, Dr. Lum, to determine if he can perform the surgery and how in-depth his portion of her surgery will be. Our prayer is a stent will suffice to correct her Nutcracker syndrome, meaning she will not have a scar stretching across her abdomen, and her recovery time will be less. After our meeting with Dr. Lum, Jayde's surgery will be scheduled for the beginning of July. She is expected to be in the hospital for at least five days. Her POTS not cooperating could cause her stay to be extended. She will spend the next several months being closely monitored and recovering, with the hope her body will quickly adjust to the procedure. Unfortunately, neither of these surgeries will correct her POTS, and the SMAS surgery is only a bandaid, not a cure.

Jayde is understandably anxious and afraid, but she is still our little fighter. Her most significant concern when we met with the doctors on Wednesday was making sure her belly button remained an "innie" and not an "outie" because of the incision. Dr. Jelin assured her he would do everything possible to keep her belly button intact, which made her very happy. Chris and I are allowed to stay at the hospital for the length of her stay, which is very good because I already promised Jayde I was not leaving there without her. 

*The photo is from yesterday, at our niece's wedding 


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