So far, there has been no vomiting, and no loose stools. He is tolerating the Bethanechol well so far.
The prednisone is done, and he sounds great. Much less coughing than last week, and his stamina has been fantastic.
We're on Week 4 of the running plan. I'm making it. Azer is flying through it this week. He is running way ahead of me and doesn't have coughing fits during it. I really think the two puffs of Flovent is helping a lot.
I noticed his allergy test came back from last week, and I can look at it online, but I'm not sure what it means exactly. I guess I'll have to wait until next week at his appointment and see what the doctor says. But, I feel good about it. It makes sense that all this time he's been on antibiotics and his cough hasn't gotten better, that his wet cough has been due to an allergic response to mold in the air.
Since baseball season has started, he's started to have leg cramps, just like last year. The doctors don't seem to have much to say about it. His vitamin levels are all totally normal, and he is staying hydrated. I've been putting Gatorade through is G-tube, as he just won't drink enough of it on his own. It seems that is the only thing that makes the leg cramps go away. I'm just glad he can run the bases and not have a major coughing fit that not even Albuterol can stop.
When Azer watches Spongebob for the 100 trillion, quadrillion, quintillion, sextillion, septillion (I could go on, you know) time, I wonder at times if he actually does have a brain inside that's not yellow and squishy. But he does.
So, Azer and I were talking about the reason I'm trying to get him to do more of his CF care himself. That someday, he will be responsible for the treatments and all the meds when he lives on his own.
Azer said, "Well, I won't have to do it ALL by myself."
Me: "Hmmm.... why won't you have to do all of it by yourself?"
Azer: "Well, my wife is going to help me do it!"
And yesterday while doing our run, Azer started laughing out loud to himself (this happens a lot). He said that he thought it was funny that everyone in the world is trying to lose weight and he's the only one trying to gain weight and that it's really easy for him to lose weight. Losing weight easily is not something to be envied!
We woke up extra early today because he had a early appointment this morning. He threw up his morning bolus within minutes of getting it down, unfortunately.
Well, there are good things and not so good things.
Bad thing: His FEV1 is only 73%. His cough is not entirely clear. The doctor heard sort of an asthmatic wheezing when she listened to him. He had a very high result on an allergy test last month. They did another blood test today to test for specific allergies to aspergius. Apparently, this will help them treat the allergy/asthmatic component he has.
Good news: We're back to 52 lbs!! He grew a little bit. His vitamin levels they took last month were all fantastic. They are really happy with how he looks as far as weight gain and growth.
The treatment: Since the Erythromycin (for GI motility) did NOT work out at all, we are trying a gentler kind, bethanechol, on a low dose to see if we can stop the vomiting. We are starting Prednisone to help his lungs, and we are also increasing the Flovent.
Doctor said if there is not much improvement in his lungs, we might be facing a hospital admission soon. I don't want that for him right now, because baseball practice has started! And he's doing awesome at it so far! So, I'm hoping the steriods will help improve things quickly!
Tuesday morning, I rushed Azer to the pediatrician because I was nearly in a blind panic because his cough just wasn't getting better. I hate it when I hear that deep, mucusy cough, and I just get a terrified feeling when I hear it. After being stuck in a tiny room for three hours, and doing another X-ray, I was basically told to just continue doing what I'm doing.
His X-ray showed some improvement. The CF doctors never mentioned this term before, but the pediatrician said there was "atelectasis". The doctor said not to think that it was about lung collapse, but that it was more like mucus plugs in the lower left lobe. So, I've been trying to focus CPT in that area to try to clear that out. Otherwise, his X-ray is improvement since Saturday. I am continuing the Clindomycin. His diarrhea has improved since I changed the type of probiotics he's taking. He is coughing and spitting up mucus during CPT. I don't notice him coughing up mucus during the Vest.
This morning, he threw up again. Later on this afternoon, he was bringing groceries and he ended up getting something that was like an asthma attack, and he had a terrible coughing fit, and his face started looking slightly gray. So, a quick nebulized Albuterol and a 15 minute Vest treatment ended it quickly.
So, sometimes it is obvious he's getting better, and other times I just don't know. But, we'll keep pounding away at him. :)
I took Azer to the ER yesterday afternoon. I kept hearing that weird wheezing noise every now and then when he coughed. It just totally terrified me, and I was afraid of what his lungs would look like. So, I called the CF doctor, and he said for peace of mind I could take him into the ER.
We were only there for a few hours, but we got X-rays done. The first nurse who listened to him said she heard wheezing in his lungs. About an hour later, the doctor who listened to him said he sounded clear. Azer says, "You know those doors to the hospital? Their like magical doors. As soon as you walk through them, all your sickness just disappears." It seems this was kinda true yesterday. His X-ray was mostly clear, but another doctor said it looked the same as the last one. The last one showed pneumonia, so I'm not exactly sure what it looked like.
I was then given a choice to admit him, or to try the antibiotics at home like previously planned. I chose home! Anything to not be there at the hospital. I really hate it when the doctors ask me what I want to do. I don't want it to be up to me. Their the doctors!
So, I'm praying the antibiotics clear up this wet, mucus. But, I'm also praying that he doesn't get C-diff issues again and have constant diarrhea like last time. That was not fun. I want this kid all cleared out in time for baseball! We might (weather permitting) have our first try-out/practice next week!
About an hour ago, Azer coughed, and when he inhaled, he made a weird wheezing noise, as if it was hard to get the air in. There just seems to be so much mucus in there.
So a call to the doctor, and we're going to try another oral antibiotic. Doctor said if there is no improvement in 48 hours, we will be admitted. So, hopefully things get better. I'm tired of the antibiotics, and the improvement for a week, and then things go downhill again. Frustrating.
Last night, three hours into his night feed, he threw up his formula. So, I stopped the feed, and gave up with it. Things seem to be just fine GI wise today.
After we had more than a few inches of snow, we decided to enjoy it while it lasted. It only happens once a year year, if we're lucky.
So they slid down the hill, ran up, slid down, ran up. For hours, and hours. And Azer coughed up a lot of mucus!
He threw up about an hour after his bolus feeding this morning. I just don't understand what brings it on. Everything is the same, and nothing changes, but one day everything is fine, and the next day, we lose a feed. He says he feels goopy and yucky before it happens (I'm thinking that's his words describing "nauseous"), and then he can feel the formula shooting up, and he said it can be really painful. Like his stomach really hurts during those episodes. :( It's so frustrating not being able to fix it, even after seeing a GI doctor.
He most definitly has a productive cough today. In other words, his cough is definitely junky today. Very wet and mucusy. The doctor wants to wait for antibiotics since Azer was just on them like last week.
So, we are being aggressive with treatments. I have added a few CPT sessions in between the vest treatments. I notice he coughs up mucus during CPT, and he really doesn't cough up nearly anything during the vest.
The Acapella worked very nicely this afternoon. Yeah, he's going out of the shot to spit out the mucus. Might be gross to some, but to me it's great to see it come out! He is doing albuterol along with the Acapella.