Lilly weighed in at 7 lbs. 7 oz., or once again just hovering around the 3rd percentile. She managed to grow to 21 inches, which is approximately 10th percentile, but her growth is, as my pediatrician calls it, "marginal" and concerning. For this reason, Dr. Taylor paid a special visit to Dr. Kanga on Wednesday to discuss Lilly. This was triggered by her weigh in last week at a measly 7 lbs. as well as her nurse's description of Lilly's BM as "mucousy" and "greasy." Based on what Dr. Kanga calls the empirical evidence, he and Dr. Taylor believe that Lilly likely has cystic fibrosis. We still don't have the full genetic panel back yet, but they are expecting a positive diagnosis. Thus, Dr. Taylor has set us up with a second appointment with Dr. Kanga on Wednesday at 9:30. We are going in for a second sweat test on Tuesday to see if Lilly will sweat enough to give us a definitive diagnosis.
Following our appointment with Dr. Taylor, I had to take Lilly to UK to see Dr. Kanga's nurse. He has opted to start treating her for cystic fibrosis. Barb gave me several samples of the pancreatic enzymes, which she must take at every feeding. We have to break apart the capsules and put 1/2 the beads into a teaspoon of rice cereal and feed it to her prior to every bottle. After her bottle, I sweep her mouth to remove any remaining capsules. That is really all there is to it at this point. It is my understanding that these capsules will travel to her small intestine where they will break down and help her digest the fat and vitamins that her body cannot naturally digest. Apparently, we should see an almost immediate change if these help her. She should be more satisfied, less gassy and fussy, and start gaining a significant amount of weight, at least an ounce or more a day. I was also told that this dosage and type of medication may not help her, but we should know one way or the other by our appointment next Wednesday with Dr. Kanga.
Both Dr. Taylor and Dr. Kanga also believe that Lilly should get the RSV vaccination, as that is the biggest risk for a CF patient her age at the moment. But the RSV vaccination is apparently liquid gold in the medical world, costing approximately $1000 to $1500 a dose. She has to get a dose a month through the season, which runs until the end of April. The problem here is that insurance rarely covers it unless (a) she has the official diagnosis of CF and (2) she has existing lung problems. We have neither at this point. We are going through the process and will see what the insurance company has to say, although I have been told to expect full denial.
What do I say? My emotions are all over the board. My immediate one was complete shock and panic. I was in shock at Dr. Taylor's office, I think, and had a total meltdown at Dr. Kanga's office. His nurse, Barb, was so helpful and just let me cry and comforted me. Since that time I have gone through a rollercoaster of emotions. Anger. Why is this happening to us? What did we do to deserve this? Remorse and shame. I have no reason to be angry or upset - I know how much worse things can be and this, in the scheme of things, is not that bad. Grief. This is not the life I would have chosen for her. This is not the life I would have chosen for our family. Resignation. This is the hand that we have been dealt. We are strong enough to deal with it - we have to be. What is frustrating to me is that I thought I had really moved through this process quite well - now I realize I have been hovering in a denial stage for far too long. Even in the face of the signs - the abnormal screening, my lab results, Lilly's lab results, her weak weight gain, and her greasy bowel movements - a part of me has been strongly holding onto the fact that I was going to wake up from this ridiculous nightmare and we were going to laugh about this one day. I no longer think that is true. Although I realize that until we get the final diagnosis, there is always the possibility that she does not have this disease, I think at this point it will be a miracle and I can't continue to chase those kind of rainbows anymore. Time to face reality.
I want to thank everyone again for your thoughts and prayers. Please don't stop praying - sometimes our initial prayers are unanswered, but I don't doubt that things will turn out okay in the end. Many of you have asked what you can do to help. What you are doing already - your support - has been to date all the help that we need. But we do have a request and I hope you may be able to help. Based on this potential diagnosis, Lilly can no longer go to daycare - the exposure would be too great. There is also a risk of Olivia bringing home the germs as well. I go back to work in 4 weeks, so I only have a month to figure out new childcare arrangements. If you know of anyone who is interested in a nanny position, and would be willing to take on a child that may have some additional special needs, please pass their name along to me. If you have gone through the process of finding a nanny before, please let me know how you did it and what the pay scale is for a nanny 5 days a week, approximately 8 hours a day. I am at a loss as to where to begin. But I know that I need someone who I can trust to care for Lilly and Olivia and still provide Olivia the stimulation that she gets at daycare. I am heartbroken that daycare is no longer an option - unlike many, I am a strong proponent of daycare and really never considered anything else. I haven't missed the irony that it is no longer an option for us.
No comments:
Post a Comment