Sad but true, I don’t have enough time during the day to sit down and write a blog post from start to finish. I very often begin posts only to find that days later they remain incomplete. By the time I sit down to finish writing, I am often too tired to complete a thought much less write one down. My lack of blogging is certainly not because of a lack of things to blog about…quite the contrary. Things have been busy in our house…I am hard pressed to think of a time when they have not been. In an effort to catch up, I am going to attempt to write the Readers Digest version of medical events.
Lucy an I are spending our afternoon at the hospital in day-med getting a blood transfusion, which is why I have time to write. Nothing slows me down more than being on hospital time watching blood drip ever so slowly into our little one’s body. Luc is in need of a boost that blood gives her, we are looking forward to rosier cheeks, lower heart rates, and hopefully a decreased need for oxygen. Hematology-wise Lucy has developed some new issues, aside from her reoccurring need for blood, it appears that she has developed a clotting disorder that has us all wondering why. A while back Lucy occluded all four of her IV lines while they were running, to quote our infusion nurse “That’s impressive, but then again it’s Lucy!”. For the last month we have been running tests on Lucy’s blood to help us understand the cause of her clotting issues. Dr. R is consulting with hematology in regards to all of this. On the plus side, we got approval to use TPA ,the medication that is used to break up blood clots, at home which means that when Lucy’s line clots off we no longer have to sit in the emergency room or day med for hours on end waiting for blood to dissolve.
Lucy is battling yeast
again still, she is covered in yeast from head to, umm... bottom. For the last month we added oral antifungals to Lucy’s g and j tubes as well as swabbing her mouth with the med in hopes of eradicating the yeast from her entire GI system. We’ve had Lucy on a daily prophylactic IV antifungal since July in hopes of keeping the yeast from entering her bloodstream thus preventing it from getting to her CVL, but it does not work in her stomach and intestines as it does not go through her GI system. Infectious disease has been consulted on this issue because in theory her IV antifungal should be preventing the thrush in Lucy’s mouth. It is thought that Lucy’s poor immune system is playing a role in this issue. We had recent discussions with Dr.R about adding IVIG therapy to Lucy’s list of therapies. In theory this could help to boost Lucy’s immune system, but as we have learned Lucy’s body has other theories.
We have not had any sleepovers in the hospital as of late and for that we are very grateful! That is not to say that you haven't seen us around the hospital, we are here at least once or twice a week sometimes more. In an effort to keep us from sleeping over we continue to increase Lucy’s level of care at home, trying to be proactive. When Lucy had her most recent central line(CVL) placed in October, our surgeon cautioned us that access is an issue for our girl, she is not easy to get a line into, as a result we need to do everything we can to preserve the integrity of this line. In an effort to keep the infections at bay, we began daily ethanol lock therapy on Lucy’s CVL. This has added another step to our daily med schedule that makes things even more complex, our home nursing agency has expressed to us that they are in uncharted waters when it comes to staffing nursing at our house. Lucy’s level of care is A LOT, but because we have all of the help that we do have we are able to continue to live our life at home!
When you have a child like Lucy you are always waiting for the other shoe to drop, so to speak…we know she is going to have another line infection, get sick with another virus, and end up in the hospital again sooner or later. Drew and I have had some very serious discussions about life with Lucy’s team, we all hope to give Lucy “the best longest life”. Mitochondrial disease is a very difficult disease to try and predict, nobody knows what the prognosis is for our girl. Dr. R uses phrases like “she is not heading in the right direction”, or “she is my sickest patient at the moment”, or “Lucy is the one I am most worried about at the moment,”, but he will also be the one to tell you that you never know what can happen. He is a glass half full kind of guy, we often refer to him as our eternal optimist, but even so he continues to tell us that he is worried about our girl. She is very unpredictable, yeah she likes to mess with your mind and heart like that, after all she is a girl. Knowing what we know about Lucy’s health, hoping for the best, and with the support and encouragement of Lucy’s team Drew and I agreed to put Lucy on pediatric hospice. I will write more about this in a later post, but know that this does not mean that we are giving up on treatments, or that we feel that Lucy’s time here on earth is coming to an end. It is our hope that by adding hospice to our team we will be able to provide Lucy, our entire family for that matter, with supportive care in our home environment. I would be lying if I said that this was an easy decision, nothing about Lucy’s life has been easy, but we have some peace and comfort in knowing that we have the resources available to us that hospice can provide.
Thanks as always for your thoughts and prayers, love and support, we could never do this alone.