Friday (Not So) Fun Day

It has been a busy few days. If it weren't for the whiteboard on the wall, we wouldn't know what day of the week it is. Usually Kayleigh is blogging about her favorite things. Not so much this week. She's a tough cookie though, and determined to get over this hump.

Since the last blog it has been crazy. On Monday the doctors ordered a CT scan with contrast. Kayleigh's belly has swollen an incredible amount and they wanted to see what was going on. While she was sedated, the radiologist doctor inserted a long needle in the pockets of fluid to extract as much as they could. Two drains were inserted, one on the left near the fistula site (the sigmoid colon), and one on the left near the resection site (near the ileum). The results showed an enormous amount of fluid build-up that appears to have infection in it. They drained almost two liters of fluid (think about a 2 liter bottle of soda). The right drain was pulling infected fluid. Without going into gory details, you could tell by the color. A chemical was inserted to break up any thick parts. Both drains flowed non-stop. The left drain had clear liquid in it. It did not have infection like the right side.

Kayleigh begins to get relief from the pressure of the fluid on her lungs. It was causing a shortness of breath. She is sore, though, where the drains were inserted. They both have a stitch holding them in place and every time she moves it "pulls" her skin.

May 4th, day ten, Kayleigh is down about ten pounds from when the drains were put in. This is all from the fluid. The swelling is going down on her legs and belly. Another scan is ordered to make sure she doesn't need more drains in areas where the fluid still remains. White blood count is still normal. Fluid from the right drain becomes more greenish/brown. Kayleigh eats for the first time in almost three months. She eats an Udi's gluten-free blueberry muffin. She is timid at first but eats the entire muffin! She works with a PT on climbing stairs since she lives in a 3rd floor apartment. She is anxious but is excited about going home soon!

Dr. Iqbal, the surgeon, and Dr. Geoff, resident on the hall, come for a visit. We are anticipating a discharge when we see the happy look on their faces, then Dr. Iqbal walks around the bed and looks at the fluid coming from the right drain.  It is a dark brownish/green color indicating that it is bile. Bile should not be in the abdominal cavity and Dr. Iqbal's expression changes from happy to grim. He shares with Kayleigh that he suspects a leak even though the first and second scan did not show signs of a leak. He orders a third scan to be done that evening. We are devastated to say the least. The doctor explains some scenarios. There could be a leak that did not show on the scans. There could have been a leak in the beginning that closed up, and before closing, it leaked bowel fluid into her abdomen. During the surgery, some fluid may have gotten in the abdomen and this is a result of an abscess putting off fluid. If it is a leak, and surgery is needed, Dr. Iqbal said that the surgery would not be performed for three months. Wow. Thinking ahead, three months is when Kayleigh would be when she wanted to continue grad school at the University of St. Augustine. Three months is when the new school year starts for me. We were in shock.

The doctors left and it took a while for either of us to speak. When we did, the water works began. I asked the nurse if she could ask Dr. Geoff to come back to answer questions. Dr. Geoff showed us the scans and explained in layman's terms what was going to happen in the next few days. First, another scan would be taken to rule out a leak. Let's get through that first. If there's no leak, then there's no surgery.  All the other stuff should be put on the back burner until we cross that bridge. So, we put our big girl panties on, grabbed a wheel chair from the hallway and got the heck out of dodge. Well, not really, but we did go on a walk to the North Tower where the Children's Hospital is located. The nurse called us about an hour later to tell us the Gatorade contrast was ready, so we returned with a clearer conscious. The scan was performed around 10:45 PM.

The scan results came back early on May 5th. There is still no sign of a leak. The bile probably came from a leak following the surgery, then the leak closed as her body healed. The leaking bile caused the abscess causing the infected fluid. The plan is to keep the antibiotics going to kill the bacteria. She will have to insert the antibiotics into her port rather than by mouth because we found that she is not absorbing enough of the pills to do any good. She will probably keep the right drain for a while, the left drain will most likely come out during her follow up appointment with Dr. Iqbal.

Kayleigh's red blood count has been low so she had a transfusion with two units of blood today. Her blood type is A-. Chris and I both have A+ blood. Fun fact, a person with negative blood can receive both positive or negative blood. A person with positive blood can only receive positive.  Having two parents with + blood gave Kayleigh only a 6.25% chance of having negative blood. She ate baked chicken and mashed potatoes for lunch but regretted eating later on because of the pain. It will take time for her belly to get used to eating again. In time, she can eat whatever her heart desires. Meanwhile, she will be on TPN (nutrition) until her body starts absorbing enough calories and nutrients to keep her healthy.

I didn't finish the blog in time to publish it on Friday because Mamaw Connie and Kayleigh's dad came down from Fort Mill and interrupted the process. I did want to share what we found out this morning. The doctors are going to monitor Kayleigh while she goes back on the IV antibiotics to see if the white blood goes down. If it does, she will learn how to care for the drains and find out her future schedule of scans and doctor visits. We are looking to leave the hospital on Monday to head back to St. Augustine where she'll be set up for her rehabilitation. Baby steps.

Kayleigh would love to hear from you whether she's met you or not. She loves to hear other people's stories as much as she loves sharing her own.

We plan to include many of her caretakers' names in the next blog because they mean so much to us! Stay tuned!