As many of you know, Laycee went into the hospital today for a list of doctors appointments, tests and imaging.
We started with the Otolaryngologist (Ear Nose and Throat Doc), The head of Seattle Childrens OTO department– Her L ear, the ear she has had the infection in for three months looked significantly better! Her Right ear, which was infected last Friday now, has now had a culture sent off and was suctioned out. He was unable to “clear” it all out due to her being awake and in started causing her too much pain. He let us know that these are not “typical” ear infections, the way they present themselves is “different”. The amount of antibiotics she has consumed over the past three months is ridiculous. No would do not like giving them to her, but we don’t have a choice. After spending 45 minutes with this doctor, who has done so much advocating on behalf of our family, we moved on to the next.
Infectious Disease – We spent 45 minutes with the resident doctor, going over every bit of information about Laycee. He sat there with a shocked look on his face when I told him she has lost her finger nails and toe nails at times, and acts basically normal with a fever of 104 degrees. After 45 minutes of listing every symptom, infection, illness she has had he went to get the doctor who is the head of Infectious Disease at the Hospital. He came in, and asked about other appointments we had scheduled.
We were now 20 minutes late for a CT Scan. He called down, and we needed to go right away to not give up our slot, and asked us to come back after our Rheumatology appointment, which was scheduled right after the scan. Nothing came up with rheumatology, they are “fairly positive” this is an immune issue. I did learn two things though, Laycee is fairly flat footed, and she is disgustingly double jointed.
Now back to infectious disease. Luckily the resident doctor wrote down every last bit of information that was given to him, and it made the next bit a little easier to explain. We went over each issue with the Head Dr. He found more white and brown spots that have appeared on her body than we had ever noticed. He listed all the uncommon bacteria’s found in all her cultures over the past 2.5 years, and went over how rare these really were, especially multiple times. He has never seen anything like it, but did confirm it is an immune disorder of some type … what, he has no idea, but he has every intention of finding out. He said I know you have been patient for almost 3 years, but I’m going to need you to be patient for a little longer, he needs time to research and contact other doctors that may have been exposed to something like this before. We have been told these issues can sometimes take years and years to diagnose. Believe it or not Laycee has actually “held up” very well. When someone has and undiagnosed issue, they are harder to treat because they don’t know exactly what they are treating. Yes, her ears are infected …. but her ears are the symptom of another issue. It masks the main problem inside. With this being said, all her treatments have been fairly successful to what they could be. We have been told before to keep her away from sick people, and we will continue to do so, but we also feel she has to be a four year old. It is very uncommon for someone to outgrown something like this, but generally adults don’t get as sick. She will be starting genetic testing soon. If her ear swab comes back with any type of bacteria that needs antibiotics, she will be admitted into the hospital (Monday or Tuesday) for 24-48 hours maybe a day longer to have a port put in place, and make sure everything is working good. She will then come home and continue long term antibiotics at home. This port will be used for blood draws and medications. She will continue to take Tylenol and ibuprofen on a regular basis for fevers and pain, especially in her ears. For now, this will be her and our “normal life”. The hard part is, she doesn’t bounce back like she used to. She recognizes when she is not feeling well more, she is sleeping a lot more, she doesn’t want to be sick.
It was an information overload today, and I had my meltdown, I laid in bed and talked to my Mom … or I cried she listened, as always like my parents do along with many other people on “Team Laycee” So yes, it was bad news ….. but in a way, its a step forward. We aren’t worse off. We now have a group of specialists on the same page, dedicated to getting our daughter better and that’s all that matters. As much as we want to wake up and this to be history or solved, we know it wont and we need to remember to accept the progress god gives us. I would do anything to not see our kids go thru this. I say kids because its not just one, its 4 and two parents, it takes a toll on all of us in different ways. We all have different ways of coping with it, and there is nothing wrong with that. Every parent wants to see their kid healthy and happy, and what we are facing is NOTHING compared to many more and for that we are grateful. We cant change it, its out of our hands, We can pray that one day if another child or person is in the same situation as she is right now, they will be that much further ahead and maybe not go through what she has for the last three years of her life. She can “pay it forward”.