I apologize for my lack of updates, time is just not on my side these days. We appreciate so much the love and support that we receive from all of you who know and love us either from the words here on this blog or in real life!
When I last wrote I shared with you that there is a fungus among us. After several conversations with our main doc it was decided that we needed to investigate other options for treating Lucy’s yeast issues. Systemic/IV antifungals are tough on the body, most of them come with a list of side effects that are concerning for anyone, but even more so for Lucy. Her sensitivities to medications are limiting our choices, as well as her failing GI system and liver disease. Lucy is in intestinal failure, she has little to no function of her GI system and as a result she is unable to take in and absorb meds through her GI tract. Yet it is her GI system that is overgrowing with bacteria and yeast. We need to continue to try and treat the yeast and bacteria in an effort to keep it from translocating from her intestines into her blood stream putting her at risk for life threating infections. It is believed that Lucy’s poor immune function is playing a significant role in her reoccurring yeast infections, these types of reoccurring fungal infections are most commonly found in severely immune compromised individuals such as bone marrow transplant patients, or HIV infected patients, and Lucy. After consulting with some of the other docs in the diagnostic referral service, Dr. R talked with me about putting Lucy on amphotericin B orally. Amphotericin B is typically an IV antifungal that is know to have serious side effects when administered IV, it’s nicknamed ampho-terrible. Interestingly enough when given orally, or in our case via her g and j tubes and swabbing her mouth with it, it should have little to no side effects because it does not get absorbed systemically. Though not common, we agreed to treating her this way because, frankly, all of our other options come with a long list of side effects that will exasperate many of her existing symptoms and create bigger problems . Treating Lucy with an “oral” medication means we are taking a gamble that her failing intestines will be able to take in the very small volumes(.5mls) of ampho and move it through her GI system thus coming in contact with the yeast and eradicating it. In theory this should work; however, any long time reader of this blog knows that Lucy does not follow theory. Most if not all of the meds we are pushing down her tubes are pouring back into her drainage bags no matter how long I clamp her for. We are continuing to research options for systemic antifungals.
As for the yeast in her mouth that does appear to be improving ever so slightly. I am going to venture a guess that oral ampho is perhaps one of the worst tasting medications. Although Lucy hates the taste of the med, she is surprising us with her cooperation in allowing us to swab her mouth with it every eight hours. When we first started swabbing her mouth I said half kidding that there are not enough smelly stickers in the tri-state area to bribe Lucy with for the next two weeks, but she is realizing that it is helping to get rid of the very thick and pasty yeast that has plagued her mouth for months. She never ceases to amaze us with her ability to tolerate a new therapy, intervention, or medication. Once she realizes how much better she feels she is willing to allow us to do it, although not without tears and some back arching, this is both comforting and heart breaking.
The last few weeks have been riddled with worry, if it’s not one things it’s ten more things. Last week her urine had a strange odor to it which prompted me to ask our doc to have it cultured. On the same day, one of the lumens on her central line clotted off for the second time in two weeks. We did a dye study on her line but did not find anything obvious that could be causing the line to occlude. I was not really surprised since seconds before injecting the dye into her line for the study I flushed a med through it first and lo and behold it started flowing like a river. One sure way to fix a line…go through the hassle of scheduling a dye study. We did cultures of her line as well as because we are always suspicious when we have line troubles. Her line cultures have no growth as of today, which is a good thing, but her urine cultures grew positive for an unusual bacteria that is not a typical UTI bacteria found in the bladder but rather in the bowel. Lucy did not present with a high fever which is odd since she has a pretty significant infection, this has us all a little concerned. She was one miserable girly this weekend, which makes sense now that we know about the UTI. We started her on IV bacterium to treat the infection, which is now only going to make the yeast issue a bigger issue…ugh, around and around we go!
Lucy is in need of blood, her counts have dropped pretty significantly in the last few weeks. We are scheduled to have this done on Friday. She is also in the midst of another autonomic storm which has affected her sleeping and mine too, motility or lack there of, body temperatures, and heart rates. She has us all on a roller coaster wondering what on earth we are going to do for her. Talks between Dr. R and our cardiologist are being had, one of our frustrations is whether or not we can really do anything for Lucy cardiac wise. We are looking for some guidance as to how high is too high for her heart rates and how long is too long to let them be high. Pain continues to be a growing issue, Drew and I witness on a daily basis just how strong our little one is when it comes to pain. On Monday night we had her laying between us in bed, she was twitching and shaking she was in so much pain, but was not crying she just wanted us to lay with her.
It has been a tough few weeks around here, but we will get through them. We are scheduled to be at DuPont the next two days for what is going to amount to be loooooong days. We are in the midst of making some changes to her current meds, looking for more effective pain management.
My hope is to update more often about the everyday stuff that happens in our life, it’s just that the everyday stuff happens to be everything I have just written and then some. The then some part will have to wait for another day. Thanks as always for your thoughts and prayers, love and support, we could not do this alone!
