I was so exhausted yesterday that I didn’t have time to update on Ben’s clinic visit, sorry!
The day started out with an exploding poopy which resulted in a bath first thing instead of nursing. It was okay though, it got us both up and going. The Bactrim has done a number on his intestines and diaper changes have become quite frequent.
We left our house around 8:15 for our 11 o’clock appointment. It can take us about 2 hours to get there but I wanted to leave early so I wasn’t stressed about running behind. The little man was asleep by the time we hit Sacramento and slept for over an hour. Perfect. We got into the city about 10:15 so I stopped at a Jamba Juice to use the restroom and to get a smoothie for Ben and I to split. Too bad I didn’t get any of it, the little man drank the whole thing before we pulled into the parking structure, ha! It’s okay, at least there’ll be some extra weight on him for his weigh in!
We checked in and I let Ben roam around for a bit. He walked around the waiting room and flirted with some of the ladies who were also waiting. We were called back to take his blood pressure, weigh and measure him. At a little over 23 lbs, he is in the 75th percentile, yay!!
Our room had a big fold out bed in it so it was great for letting Ben roam around on and play. I brought plenty of toys so he was able to get out some energy.
Our Respiratory therapist was the first to visit who measured his oxygen levels- 100- perfect! We discussed the vest a bit, I was hoping he would be ready, so she brought in the smallest vest they have. It was just a bit too small, so it’s a no-go this appointment but at our next one, in 10-weeks, she feels he’ll be ready. It could take awhile, we have to go through our insurance and make sure it gets approved. The Vest, is very expensive so it can take awhile. The Vest will shake Ben's chest, helping to loosen the mucus which he can cough up. Ryan and I won't have to do manual CPT once this happens. If you want to see Gavin, a fellow CFer in his vest for the first time, click HERE. We can’t wait for Ben to get his!
The pulmonary nurse was the next to come in. We talked a bit on how Ben was doing. They are quite pleased, we haven’t been too sick this season. One 24-hour stomach bug and the latest illness but other then that, we’ve been lucky. She checked his ears and said they were a bit inflamed which explains a lot. At this point they don’t do anything for ear infections. I just watch him, and if his behavior or sleeping gets worse, we’ll go into our Pediatrician. She listened to his lungs and said they sounded perfect!! She was surprised at how well he was acting for having an ear infection. That’s our happy little guy! A throat swab finished our visit with her. The results should be back in a week, pray for the normal flora!
Our dietian came in next. I had been waiting to talk to her about starting whole milk with Ben. She thought we should wait a couple more weeks but gave us the go ahead to start. She also gave me a list of high calorie, high protein meals that I can do with Ben. A lot of it includes pumping up his meals- adding powdered milk to things, using whipping cream instead of milk, using butter very liberally, putting parmesan cheese on food. The good news is that, since Ben is doing so well, we don’t need to do a lot. I have been making him French toast in the morning which carries about 500 calories. Not too bad!
We will up his vitamin intake from 1ml to 2ml’s after his birthday. However, we need to break it up, giving them twice a day. Not hard at all, I’ll just add them to his last bottle.
Dr. N came in to see him after that. He listened to his lungs (clear!) and admired Ben’s thigh rolls! He too, was very pleased with Ben’s progress. I asked some questions on the new Vertex drugs that are in clinical trials. If you click HERE you can read their latest article. He talked about the positive results this drug is having but warned us to not get too excited. It can take a long time for a drug to get approved and even if it does, Ben won’t be able to get it for awhile. They will be very careful with giving it out to children. The long term effects are not known so it will go to adults first, then work its way down to the children. Still, we are excited!
They sent us upstairs for our chest x-ray. Not bad but Ben screamed because my mom and I had to hold him down. Hopefully, those will come back clear.
After a quick lunch, we were ready to get his blood drawn. I was dreading this but it wasn’t bad at all! I brought in a talking toy which I distracted him with. Just a little whimper when the needle went in but other then that, nothing. He even had a smile from the little man!
Our x-ray and blood draw results should be in on Monday. Pray for good news! Unless there is something wrong, we won’t need to go back until May when we will do his PFT’s. Still not needing any nebulizers at this point but I know it’s a question of when not if. Good news all around! Thanks Mom for joining me, it was so good to have you there.
Little Man with his blood draw bandage but still our happy little guy…..