Courtney had her 2 month CF clinic visit today at 10:30 a.m. so today is a long day for us. I got the girls up about 7:15 - 7:30 so they could eat breakfast since we had to be on the road by 9:00 a.m. and I had to stop by and get grandma (my mom) since she was going with us and we have a 1.5 hour drive just one way. Well for anyone that knows Courtney she isn't really a morning person at all, she is getting better but she is a slow poke so before we left I had her to her Albuterol puffer some treatment is better than none right? Well we get to clinic like at 10:15 so we took all the stuff that DeziRae's girl scout troop 3034 had gotten for the peds floor and we went and took it to them. Then off to check into clinic the waiting room was packed so we sign in and go wait in the hall and finally get to go back into the waiting room for her to be called.
She weighs 41.6 lbs she she only gained six tenths of a pound :( she is 113.2 cm tall.
Off to do PFTS
David had told us it was one of the best ones Courtney has ever done so I am a proud mama... She is gonna need a size medium vest here shortly. Here comes one of our favorite nurses to do vitals her temp was 99.5 her O2 was 97 I will take it even though it's usually 100 not going to complain.
Then comes in Courtney's doctor and it kinda went down hill from there, she isn't happy about Courtney's weight and that she isn't eating lunch every day. OK I do UNDERSTAND that she needs to GAIN WEIGHT but when I ask Courtney like 3 or 4 times if she is hungry for lunch and I get the same answer I am not going to force her to eat. I know when she is hungry she will tell me and she will eat dinner is a hit n miss some nights she eats great others not so great yes I know that heat plays a big part right now but we have A/C and keep it in the 70's. So the Dr. added Periactin 2mgs at every meal again, lets hope this works I was told to do one month one and one month off. Then the DR. went on to say that her PFTS numbers are down from last time and then asked me if she had done treatment and I had told her she did her Albuterol puffer but not the vest. What does she want me to do get my child up way earlier than I need too??? When the nutritionist came in she told me that if Courtney's doesn't gain some more weight by September we will have to come up with another plan. Her BMI used to be in the 50% tile and now it's in the 25% tile. I had asked her if I should have Courtney eat a snack at school during the day she told me yes. So needless to say I will do what I can to get her to eat and gain more weight but I can't push and make her or she may just not eat anything or very little.
Sorry for a not so great appointment! CF clinic always sucks, it just does!
ReplyDeleteYou doc actually likes you to do treatments BEFORE? Hum weird, my doc always say to not do them (which I couldn't anyways b/c my appointments are at 9 and I have a 2.5 hour drive). But Maybe you should have them do pre and post albuteral treatments and see how she reacts to it.
As for her weight, have you thought about a g-tube? I have one and I look back and think I should have done it YEARS ago. Its honestly the best decision I have ever made for my health. At first I thought it meant I was in like end stages of CF or something. But I honestly think they should be standard CF care. Now there is no stress with eating. If I want to great, if not great oo b/c I will get the cals I needa at night. Those with higher BMIS tend to have better lung function. The ideal CF bmi is 22.
Is she drinking any kind of supplements? I find that chocolate boost is the best. Maybe have her bring 2 to school and drink them. I also had notes at school that I was allowed to eat whenever I needed too. I always kept food and drink with me.
My mom also let me snack instead of forcing meals on me. To this day I don't eat meals liek everyone else done. I just think that breakfast, lunch, dinner time table isn't for CFers. I also think its good that you don't force her.
But I would really look into a g-tube. And if it doesn't work it can always be removed!
What were her PFT's if you don't mind me asking?
Hope your next appointment goes better!