I guess Carly missed the nurses & doctor's at Primary's so much that she decided she wanted to spend a week visiting them! She went her entire first year without getting a single infection and then has gotten hit with three in the past 10 months! No fun.
Last Tuesday Carly wasn't acting quite herself and started running a low grade fever throughout the morning that I was watching closely. Later that afternoon, as Carly was waking up from a nap, her nurse came to draw routine labs and take her vitals. When he took her temperature, it had climbed to 103°, which when you have a central line means an immediate trip to the ER. So I drove her up to the ER at Primary's, they drew cultures which ended up being positive for a very pesky intestinal bug called enterococcus, and she had to be admitted.
Carly is especially susceptible to infections because along with missing most of her small intestine, she is also missing her ileocecal valve, which is the valve that prevents bacteria from the large intestine from entering the small intestine. So because she doesn't have that valve, bacteria can easily travel up into her small intestine (called bacterial overgrowth) where it can then be absorbed into blood stream. With healthly people if a bug like that gets into your blood stream, your body can usually fight it off pretty easily, but because she has a compromised immune system due to her illness, bugs like that just hang around and this one found it's way into her line (the foreign object in her body) and ended up making her really sick.
Since it's the 3rd time she's had that same bug in her line, they ended up having to pull out her line, which is a big bummer because there are only so many places that lines can be placed. When you've used up all of your available access sites, then it becomes problematic because you no longer have a way to receive your life saving TPN. If you still need TPN to survive and you can't get it due to lost access points, then you can become eligible to be placed on the intestinal transplant list. If transplantation can't happen quickly enough, then hospice measures are put in place. Our doctor's have always done everything they could do to save Carly's lines, but since the same line kept getting infection after infection with the same bug, the safest thing to do at this point was to pull it. Without a line in, they couldn't run her TPN while she was inpatient and so she ended up losing 1 1/2 pounds during her stay. Carly is currently on her 3rd line.
While doing an echocardiogram to search for an available access site for her new line, they found a blood clot in the internal jugular vein in her neck. According to her infectious disease doctor, bacteria like enterococcus LOVE blood clots and like to settle in and make their home there, and that's exactly what this one did, which means that we have to do prolonged antiobiotic therapy at home (4 weeks this time instead of 2 weeks) in order to clear the bacteria out of the clot. I was concerned about there being a clot in her neck, but the doctor's said the risk of the clot dislodging and causing issues is extremely minimal and that the body will naturally break the clot up with time.
As soon as they started the antibiotic (ampicillin) in the hospital, Carly's stool output increased like crazy (this always happens when she's on antiobiotics). She was losing so much fluid in her stool that she became extremely dehydrated and lethargic so they had to keep pumping her full of specialized IV fluids to try to counteract her high fluid loss. They finally got everything back in balance, but in the meantime it was heartbreaking to see her so lethargic and feeling so lousy.
Her surgery to have her new line placed went well except that they had a really hard time waking her up after because her blood sugar dropped so low during surgery. Normal is 80-100 and hers dropped to 44. Her heart rate dropped down to 54 (normal is 80-130). They got her hooked back up to an IV and after 1 1/2 hours she eventually came to, but in the meantime it very nerve-racking.
She's home now and doing well. We are still battling constant dehydration due to her high stool output (around 10 very liquidy blowouts a day), so her nurse has been coming to draw her labs every few days so her GI team can keep adjusting her TPN to keep all of her levels in check. Carly pounds down tons of Pedialyte when she's off her TPN to help keep her hydrated.
Now that she's home, we have to run the antiobiotic through her line every 6 hours. Each dose takes 30 minutes to complete. The antiobiotic comes in these little pods that we hook up to the line on her chest and then we have it hang out the back of her so she doesn't play with it. We have to run this 4 times a day for 4 weeks.
She was so adorable when she got home and you could tell by the smile on her face and her cute giggles that she was beyond delighted to be home.
Carly looks like a deer in headlights in this photo, but I still love it because it shows how much Lilly loves Carly and how happy she is to have her home. Bryson and Lilly both love her to pieces and are so sweet with her!
Frequent hospital stays have become a part of our new normal. They aren't fun, but we've accepted them as part of our new life and have grown pretty accustom to them. We are so grateful for all of our family and friends who always so willingly step up to help us during those times.
Favorite quote this week:
"Some things may never get better, but your ability to deal with that problem will improve."
So true. Life rules.