Vent Clinic

Today was the much anticipated vent clinic. I was sad though when I found out it was not our regular pulmonologist doing the clinic today but the other pulmo. He knows Autumn's case also but he's more reserved than our normal pulmo so I was a little bummed. Anyways, we made sure Autumn had been off her vent for 3 hours when we got there so they could get her blood gas levels while off the vent. She had her noon bottle and then fell asleep. We decided since we were IN the hospital and AT vent clinic we would just let her nap off her vent and see how she does. She stayed above 94% for 20 mins and then started dipping to 87-88 and back up. We then decided to put her on the vent (she had been awake for 7 hours before this). We left her breathrate though at 6 instead of turning it up to 20 like we normally do when she's sleeping. Her sats then stayed at 97-98% the rest of her nap. The dr. was very pleased with it and asked if we did it much at home (we've only let her take a nap once without her vent). He said to keep her at her regular rate until we have a sleep study but that if we want to "test" her limits then it's our decision since we know her best and that her CO2 levels are great and he's not worried about her retaining CO2 while sleeping off her vent. ;) We will be scheduled for a sleep study in the near future to see just how well she's doing and what steps to take from there.

Right now she's off the vent for 7 hours a day so they want us to have her off 12 hours a day if possible. Right now I always put her back on her vent when she's tube fed because she seems to gag not as much as when she's off the vent during feeds but he's hopeful we will fix the retching/vomiting issues so we can leave her off the vent all day without breaks. We discussed our issues once again and now we are going to try out some new formulas to see if that is the issue. The dr. also prescribed Zantac as well to give inbetween her prevacid doses to see if that helps. I really do not want to put her on another med so I want to try out all the formula switch first and if those do not seem to help the we can add the Zantac to see if it makes a difference. He did tell me some kids just retch and they never seem to know why and they outgrow it eventually...well, hope that's not the case for Autumn and we can fix this problem of ours. I gave her the new formula at 4pm (her worst feed always) and 8pm. She never gagged or vomited...James said around 7 or so she did gag a little but that has been it so far. Whoo Hoo! Hope it keeps up but with Autumn you just never know.

This year Autumn will NOT be getting her series of RSV shots since she's 2 now. So, we pray for a sick free winter. She's already gotten her flu shot and I really need to get the other kids and myself by to get one as well. We are kind of going into winter mode...have the hand sanitizer at the front door and having people take off their shoes when entering the house (to not track in outside germs since Autumn is a floor explorer now). We use to keep her indoors all winter but this year we may get her out a little more than usual until we start seeing more flu/RSV stuff going around then we may have to hibernate. The weather is just so perfect right now that we want to get her out while it's not hot anymore and have fun! They were pleased with her x-rays and she was clear as could be so all looks well for now. ;)

Tomorrow the kids have the day off from school for fair day. They all get a free ticket and day off to enjoy the day at the fair with their family or just stay home. So, we are all headed out to the Texas State Fair....James has never been so it should be a great time. I'm having a debate over which stroller to take. Since Autumn is only on her vent while sleeping I've stopped using our 50 lbs, $6,000 stroller and using our normal baby stroller again. Autumn LOVES the normal stroller and it's not as obvious she's got medical issues. The medical stroller holds the vent and all her equipment well but not as comfortable for Autumn. The normal stroller can hold the vent but the weight from the vent is heavy on the basket and not sure if it will hold up all day at the fair. Decisions, decisions.