This week was kicked off with a few of B’s appointments. Yesterday we met with Dr. Flores at Blank Children’s hospital Pulmonology clinic. He was very impressed with how well Braden has been doing since home and answered a lot of Adam’s questions about weaning, Passy muir valve traches (allow air past the trache and up through vocal chords), and sprinting (going off the vent for timed periods). Dr. Flores was pleased with the fact that Braden can sprint up to 5 minutes or so off the vent. Adam even confessed that on our trip back to Fairbank for Adam’s family Christmas we hooked him up to the transport vent and didn’t realize that his external PEEP was set to 0 when it should be 10. Dr. Flores said that even though it was an unintentional accident, its good information for them and gives him some confidence in tweaking his vent settings and try to work towards weaning. He ordered some artificial noses for his trache do when we try sprinting him as well. They also scheduled his overnight stay for April 13th-14th. The plan is to admit him early that morning to Blank, do a swallow study with Speech Therapy, perform bronchoscope in the afternoon, do the sleep study that night, and then tweak his settings a bit on the vent and monitor him until the next day. Dr. Flores gave us a tour of the PICU and it looked like a scene straight out of House; with the large rooms with glass walls and sliding glass doors. The nice thing about the PICU (if there is one) is that the rooms appear pretty large so that’s a bonus. This is all dependent on the availability of a bed due to RSV/flu season.
Today was his appointment with GI to get his new, larger G-tube. We loaded him up with Tylenol beforehand and got down to DSM. The procedure is done right in the room but is a bit invasive since he has a non-balloon button so it hurts a bit when the old one gets pulled out. I made sure we had an ambu-bag, spare trache, and O2 on the bed next to him in case he got so made he threw himself into a fit. The doc warned us he was gonna be ticked off so I held his arms and tried to calm him down as best I could. It was a pretty loud POP when the G-tube was pulled from his stomach and he was REALLY mad but I was able to calm him down after a minute or 2. Then when the new one got put back in he was REALLY upset. It took a bit to calm him down but he never dropped his SATs or had a spell so he’s a rock star. I dressed him up in his Superman shirt from Nurse Kate to give him some extra confidence going in to the appointment. Daddy, however, didn’t fare so well with the switch. I told him not to watch but the loud POP got to him and then he said a bunch of blood/water/stomach contents (which was just water and Tylenol) came gushing out and his subconscious took over and he felt the pass out/get sick urge and had to go sit in the other exam room next door. He was a lovely shade of yellow/gray and almost matched the paint on the walls. B and I gave him a pretty hard time when he came back and Dr. Noble made him sit in a chair the rest of the appointment…poor daddy he can’t catch a break. He tries to man-up and get down and dirty but his mind takes over and gets the best of him. Maybe next time…even though daddy says he hopes B is eating by mouth before the next time his G-tube gets replaced :)
Other Braden stats-he weighs 21.6 lbs and is 25 1/4 inches (HE GREW!!!). He is also cutting all 4 molars at once :( Poor dude! He only has his bottom 2 teeth and now these molars. We may need to look at getting him some baby dentures!
This weekend we are meeting with Pam, one of Braden’s NICU nurses who has a photography business on the side, (she did all the pics for our Christmas cards) and the boys are getting their 1 year pics and Evan is getting his 3 yr pics. It should be fun…well lets say interesting . I thought the Christmas pic adventure was a disaster but she ended up getting amazing pictures so I'm optimistically excited :) We will have the fabulous Nurse Sarah with us to help so that will be great too! She can see how crazy it is to fit the whole fam in the van and travel Byersdorfer style!
on April 11th Braden has an appointment in Iowa City to meet with the craniofacial docs to discuss when we will fix his cleft pallet in his soft pallet. Then they are going to put him to sleep and do his hearing test. I may ask them if they can remove the small cyst on the back of his head he has had since he was about 6 months old. It will be a pretty full appointment and I hope we can get some answers to how well he can hear.
Other big news for April…EVAN TURNS 3!!!!! He is so excited too for his “Sticky” Spiderman birthday. Our friends are letting us borrow their bouncy house and Evan picked out a pinata for his party and can’t wait to “get some candy!!!” I can’t believe he is going to be 3 that’s mind boggling to me. He has turned into such a funny, witty, adventurous kid who is an AMAZING big brother and I couldn’t ask for a better kid!
Jacob still isn’t walking but will shuffle along the couch and can now climb the entire flight of stairs all the while laughing hysterically. Unfortunately, he does NOT sleep through the night again. He wakes up every 2 hours and will only sleep when he is being held…not sure whats going on but I am open to suggestions!!!! He loves climbing all over Bailey and blowing kisses to just about everybody! He has this new crazy “cheese” face he does now when the orange light comes on my camera before the flash that are just hysterical! Also, after bath time his hair is SUPER curly so I like to spike it up and show off his sweet Jersey Shore-esque hair :) Hes a junior Pauly D in the making!
Hope everyone is having a great week…keep your fingers crossed that pictures goes well!
Ace and Gary on their fire truck
Don’t feed the bears Evan!!!
My sweet little thumb sucker
Playing with his toys
Big boy riding in a big boy car seat :)