Posts Tagged ‘c. diff.’
Yesterday morning, the home health nurse came over and pulled Julia’s PICC line. The first thing Julia wanted to do was go swimming! I think we’ll try and get out to the pool today since the kids don’t have school. Julia’s first clean-out is finally finished! All I can say is…Julia is amazing! I think she actually grew a little attached to her PICC. It was like an old friend after being with her for two weeks straight. Julia is very happy to be back to her regular treatment schedule…only two times each day.
This is Julia's actual PICC.
So glad to have it finally out!
I’d like to reflect a bit on this first time experience if I could. What an amazing two weeks this has been. We discovered that our family is planted in a truly amazing neighborhood. Not only that, but we are a part of a fantastic CF community. Julia has been given the best possible care. Our family has received support from dozens and dozens of people in the form of phone calls, messages, cards, gifts, treats, meals, childcare, etc. One dear friend came over twice to hook up Julia’s IV meds when Joey and I were away…quite the bonus to have a friend that is also a nurse. Words cannot express how thankful we are to have received such fantastic support. It really made these past two weeks more manageable.
I learned that it is very hard to have a child in the hospital, no matter how sick they are. It’s just plain hard. Being able to finish Julia’s clean-out at home, as challenging as it was, was a true blessing. Julia was happier, Olivia and Austin were happier, we all were much more content. I felt that Julia got more exercise, which was very good for her lungs. We all got more sleep. Julia slept better in her own bed. We were able to live our lives…with several interruptions a day…but we could do all the things we always do. Julia could go to playgroup, preschool, dance, the store, the park. How great is that! She only missed one day of preschool. Having Julia home was a benefit for the entire family.
I learned that you can do an IV med anytime, any place, no matter how many weird looks you get.
Julia having her IV med at back-to-school night.
I also learned that Julia can't be without her dance clothes. She has worn them everyday since she got out of the hospital.
I learned that two flushes along with one IV med will make Julia pee her bed at night. Next time, I’ll buy some pull-ups for the occasion.
I learned that IV antibiotics won’t give Julia c. diff. How cool it that? Julia was blasted with some pretty hefty antibiotics and no c. diff. It didn’t even touch her stomach, unlike our experience with the oral type.
I learned that coban is pretty cool stuff. It’s like a stretchy wrap that is also adhesive. The home health nurse also told us to cut the toe out of a sock, slip it over Julia’s PICC and then wrap it with coban. This really helped the irritation on Julia’s arm caused by the coban. Coban comes in all kinds of colors and designs and made Julia’s PICC more fun!
Coban wrap...pretty cool stuff!
I learned that you really need to watch and pay attention. Sometimes a mistake can happen and you need to speak up if you catch it. I don’t know how health care workers do it. It’s a profession where mistakes aren’t allowed, but as humans, we all make mistakes. Always be paying attention, ask questions, and speak up.
I also learned patience. I guess this is something that I’m always learning.
So, Julia will be tested in two weeks for pseudomonas. Our hope is that this clean-out eradicated it. There is no guarantee that comes with this. Regardless of the outcome, we felt that it was worth the shot. We’ll keep fighting, come what may.
Well, Julia is now finished with Cipro…that awful oral antibiotic that reeked havoc on her intestines. She is now infected with c. diff., something that is not new to her. Julia has gone months and months without having c. diff. and I was hoping that we would be done with it forever, but it’s looking like every time she goes on an oral antibiotic, we may have this to look forward to afterward. This complicates things because she’ll be on all kinds of antibiotics her entire life. Her stomach just seems to be very fragile and its balance is easily off set. Julia is now on a new antibiotic to fight the stomach infection. Strange…antibiotics can cause c. diff. and then used to fight it. Sometimes I just don’t get it. She’ll be on this new antibiotic for ten days and then she’ll be retested. C. diff. can be hard to get rid of and in the past it has taken several rounds to beat it down.
On another note, Julia has been going to her Gymboree classes for several months now and she just loves it. It’s nice for her to get to do something just for her. We go to class when Austin and Olivia are in school and afterward we go to Einstein’s Bagels for a snack. Julia looks forward to this once a week and we always have to get a bagel when we’re done.
So this week has been a fun one at our house. Julia has decided that she just won’t wear diapers anymore. She would rather wear big girl underwear or nothing at all. She is getting the whole potty thing, but that doesn’t mean that we are without plenty of accidents. I just may need to throw away my wool rug that is in my living room after this is all said and done. I really dislike potty training. It’s like having a puppy that isn’t house broke. Puddles end up all over the house and poop gets places it just shouldn’t be.
This time around it’s a bit different from my other two. Julia’s stomach is very sensitive. She has had a history of clostridium difficile (c diff.) and has also had salmonella once before as well. C diff. is found naturally in the intestine, but when it becomes over populated it can cause severe intestinal problems and if left untreated can cause death. C diff. can develop if a person’s natural flora is disturbed by antibiotics, or I have even read that strong antacids can cause it as well. It can be passed from person to person via the fecal oral route. The hardest thing about c diff. is that the spores that are in the feces, can exist on surfaces forever and the sanitizers that we all use these days don’t kill it. Bleach or soap and water is the only way to kill it on surfaces or hands. So when you see on the hand sanitizers that it kills 99.9% of germs, c diff. is that one percent.
Since Julia has had this, I have always changed her diapers wearing rubber gloves. I love the rubber gloves because it really keeps the germs contained. I can wipe her off and roll up her diaper, wrapping one rubber glove around the diaper–put cream on her bum using my other gloved hand and then wrap the diaper with the last glove, containing it all in a nice, sealed off glove bag, while my hands have not come in contact with any of her poop. You have probably seen nurses do this if you have watched them change your newborn in the hospital. It is really the only way to go and if I ever have another baby, CF or not, I’ll probably do it this way from now on. It is really nice for the diaper bag as well, especially if you are changing a baby where there just isn’t running water for hand washing, and if you’re talking c diff., the sanitizer just doesn’t cut it.
So now that we’re potty training, poop just isn’t contained rubber glove style at our house any longer. I have my bottle of bleach spray in the bathroom, and I bleach out her potty after every use. We do soap and water hand washing and hopefully can keep those stomach bugs away. Public bathrooms are always fun, because little ones have to put their hands all over the toilet seats to hold themselves up so they don’t fall in. Again, we just wash our hands like crazy and hope we don’t contract some crazy stomach bacteria.
When we found out Julia had salmonella, we thought she was just having another round of c diff. I became well know at the hospital for my numerous stool samples I would take up there to have tested for c diff. I took yet another sample up to be tested, because I knew something was wrong. I had become a pretty good poop analyzer and knew when things didn’t look or smell quite right, taking into consideration malabsorption. When this poop sample came back clear, I insisted she had something and I brought up more to have it tested again. Again the test came back negative. I was passed off to my pediatrician, and I told him that I knew something wasn’t right. He had several tests done, and I was surprised that it came back positive for salmonella. Julia was treated for this with an antibiotic, normally people can pass it independently, but when you add CF into the mix, it complicates things. She was treated and did eventually recover from it.
Salmonella is something that doctors have to report to the health department, so I had a 30 minute call of answering questions to determine where Julia could have contracted it. The nurse did believe that the only thing that was a red flag were the two corn snakes that our kids had as pets. Reptiles carry salmonella and can pass it to humans. We got rid of our snakes very quickly after that. I wouldn’t recommend owning snakes if you have CF.
So, this is the beginning of our potty training journey. Potty training has been easiest when I just let my kids decide when they want to train, instead of me telling them it’s time. With my son, I tried so many different times and tried so many different things. With my girls, I have just let it go and they just do it themselves and they force me to go along with the whole idea. I hate potty training, but I’ll like it when it’s all done.