So we had 3 doctors appointment in the last week. The first was with a nurse at the pediatric surgeon's office for Faith's G-tube button which has had a sore (they call it a Granuloma) that has never healed all the way since the first surgery after she was born. The nurse changed her button to a longer one and treated the granuloma again with silver nitrate and sent us home with more silver nitrate to keep treating it for the 10th time. She did show me that I wasn't going as deep as she was or leaving it on there as long, so I'm hoping MAYBE this time we can finally be successful.
The second appointment was with Dr. Guarin, Faith's pulmonologist. She is my favorite doctor and very talkative with us. She took a mucus culture of what Faith coughed up (I guess it's the same as a throat culture for someone without a trach) and then talked to me about trying another prescription, Singulair, to see if that might finally knock out the secretions and morning cough/congestion Faith has struggled with off and on for months now. I had hoped to show off how Faith is able to breathe both in and out of her mouth now, but when Dr. Guarin went to listen to her lungs Faith became extremely upset and cried uncontrollably and signed "no" to her. So we had to give up on that.
The third appointment was this past Monday with the GI (gastrointestinal) doctor for a simple weight check. Two months ago Faith's weight had jumped from the 25th percentile to the 60th and they wanted to make sure it wasn't continuing at that rate. Well it was - she is now in the 75-95th percentile which made me really frustrated. I wish they had tracked her more closely before it got this high. Anyway, they want to lower her calorie intake from 1000 cals to 900. That's fine. I also plan to start trying to introduce to homemade blended food (if I can find the time to start doing it!) and Fred and I want to get her off her nighttime drip as she gets all tangled up in all her various tubes at night and there have been enough mishaps where something got disconnected and we find her in the morning sleeping in a soggy wet mess or it causes her pulse ox monitor to quit working and we have to deal with it in the middle of the night. No fun.
Today, Dr. Guarin called me back with the results from the culture she took last week, Faith has an "abundant" colonization of pseudomonas growing in her trachea. Not great news, but also not very serious. So she wants to take her off her humidifier at night and let her sleep with just the artificial nose (HME) on her trach, which is great news and she wants us to start another prescription for 2 weeks - a Tobi nebulizer treatment 2x/day. Luckily the nurses can do it while they are there, and Fred will only need to do it on Sundays (because I'll be in Spain).
Yes, I am off to Spain!!! I leave Saturday morning and I can't wait! Mom, Dad, Terry and Sonya arrived on Monday and Leslie, Steve and Ali arrived this morning (assuming no more cancellations due to weather). I will be there until July 2nd, and will get home on the 3rd, just in time to spend the 4th of July weekend at home with Fred and the kids. Wish me luck with the travel arrangements, I'm a little nervous about it all going smoothly! I'm not worried about Fred taking care of both kids at all, he's a pro at it now, plus he'll have extra help during the days from nurses and his parents who are coming to visit while I'm gone.
Will write again when I get home.
Love to all,
Robin
