Ketchup Day

When I was in elementary school, Fridays would often be called "catch up days". "Catch up days" were the days in which we were not given any new lessons, but instead got to "catch up" on any work on which we were behind. In my 8 year old mind, I always imagined a huge bottle of ketchup when I thought about Fridays. I was hearing "ketchup day" instead of "catch up day" even though I knew that "ketchup days" were for catching up. I thought of this a few months ago when my sweet Henry told me that he "loved me to pizzas". I have been telling him since he was born that I "love him to pieces", and I guess his sweet mind was imagining me loving him to pizzas. In any case, I definitely know it is time for a "ketchup day". Actually, it is way past time, but I won't go there.

I must admit that this attempt at a "ketchup day" is slightly overwhelming. So much has happened, but I'll try not to bore you with too many details. Camille is now seeing 9 specialists at Cooks: neurology, endocrinology, gastroenterology, opthamology, cardiology, surgery, pain management, pulmonology, and palliative care. She's added pain management, pulmonology and palliative care in the past few months. This does not include the genetics teams we see, or her pediatrician. It's quite insane, but it's kind of become normal to us. The other day, as I was coordinating all of her appointments, I had the thought that people might look at this insanity and think that I had Munchausen by Proxy Syndrome (the disorder in which caregivers exaggerate or fabricate illnesses for their child in order to gain attention or sympathy). I shared this thought with our pediatrician, who promptly waved me off and said, "Oh no. No one thinks that. I mean, if you had a normal looking child someone might think that, but..." He trailed off there. Yes, I know. Open mouth, insert foot. Since I have eaten my foot on so many occasions in the past, I let it slide. At least his comment took care of my worry about others thinking I have MBPS!

The big things that have happened in the past few months are as follows. In January, Camille had surgery to have a fundo placement (the stomach is wrapped around the esophagus to prevent vomiting). The surgery has been successful in preventing vomiting, which is good because her excessive vomiting had become extremely difficult. She also had a muscle biopsy done during the same hospital stay. The muscle biopsy was to check for mitochondrial disorders, which is the last thing that the various genetics teams can think of to test for right now. Camille has many symptoms of mitochondrial problems: failure to thrive, feeding problems, vomiting, developmental delay, white matter atrophy, etc. However, the Whitt Luck struck again, and the muscle biopsy was deemed useless. The sample got stuck in Indianapolis while on its way to New York to be tested. Therefore, it had thawed by the time it actually reached the lab in New York, and could not be used. We are now debating if we want to do another one or not. It's that constant tension we have about if it is worth putting Camille through yet another procedure just so we can possibly have an answer to her condition. It's such a tough call.

Also during this same January hospital stay, Camille had another MRI of her brain. It showed that there had been very little change since the last MRI 5 months before, which would be good news if her disease had not progressed much in the past few months. However, our neurologist believes that the reason we did not see much progression is because there was little progression left to be seen. He showed us her brain scans, which was really hard on us because we could then see what he was talking about. Camille now has very little white matter left in her brain. There was so much white matter atrophy from her first MRI (which was normal) to her second MRI that there is just now very little white matter left at all. We sat down and had a long talk with our neurologist about what all this means, particularly what it means for Camille's future. He said that he believes she has a white matter disease, but he is unsure which one. About 50% of white matter diseases do not have names at this time. He said that what he does know is that she has a genetic, progressive disease that is affecting her white matter. He is unsure what that means for her future, but he does not believe that she will make much developmental progress from here, and her life expectancy will likely be greatly shortened. This was obviously extremely hard to hear, even though we have pretty much heard it before. I think that our neurologist actually coming out and saying these things, coupled with actually seeing with our own eyes the progression of her disease on her brain scans, was very hard for us. We are really trying hard not to focus too much on any of that since no one really knows what will happen. We continue just to focus on Camille.

In focusing on Camille, we've come to the conclusion that our biggest desire for her is that she have as happy a life as possible. We want her to be comfortable, and we want her to be pain-free. Because Camille was still having increased irritability, and still seeming so uncomfortable nearly all of the time, our neurologist referred us to a pain management doctor at Cooks. She is absolutely wonderful, and has since been working with us on making sure Camille is more comfortable. Apparently, children with neurological conditions such as Camille's, often feel things differently due to their hyperactive nervous systems. In this way, Camille could be feeling intense pain for something that a typically-functioning child might not feel pain for. Camille is now on a high-powered pain medication, and it does seem to be helping. We feel such an immense amount of relief knowing that she is more comfortable. There is nothing worse than feeling like your child is living a life of such suffering.

Camille's neurologist and pain management doctors then recommended that we go ahead and begin palliative care for Camille. Palliative care is care for those with life-threatening conditions. We met with the team in February, and absolutely loved them as well. They were unbelievably kind and compassionate, and were dedicated to helping us give Camille the best care possible. We had to talk about many hard things at this appointment, such as hospice care in the future, but we are grateful that team will be there to help walk us through these difficult situations as they arise.

In recent weeks, Camille has battled a staph infection on her fundo incision site and pneumonia, but she has pulled through like a trooper, and has been feeling pretty good the past few days. We continue just to "keep on keeping on". (This is my go-to response when someone asks how we are doing. It may be a cliche, but it is the perfect way to describe our lives right now). And yes, some days it is harder than others to "keep on keeping on". Some days the multiple weekly doctors appointments, the multiple weekly therapy sessions, the 6 times per day medication administering, the g-tube feeds, the suctioning, the breathing treatments, the waking up in the night to your baby choking and struggling to breathe--sometimes that is all too much. But I am constantly reminding myself that Camille is worth all of this and more.

I'll leave you with a funny story. I was in HEB the other day, and was getting the usual stares from people. Then a woman who had been staring at us walked up and said, "Does she have what my son has?" I was very taken aback by this odd question, and immediately thought to myself, "I seriously doubt it, lady, considering that she apparently has what no one else in the world has!" Out loud I said, "Um..." The woman then went on to say "You know, the lazy eye! My son has one too!" At this point, I was laughing hysterically in my head and thinking, "Ha! That's actually one thing she doesn't have!" Out loud I said, "No she doesn't have one of those! Have a great day!"

Oh boy! The things people say! Sometimes it drives me crazy, but once again, Camille is worth it. No matter how many stares we get, or how many people give us the "I-feel-so-very-sorry-for-you" look, we don't mind. Again, Camille is worth it!

After all, we sure do love her to pizzas.