Well as you can guess from this title its that time of year again :/ Ugh I dread the winter months but on that in a short minute. On Thursday B had his cleft repair check-up and ABR hearing screen. Everything looked great! It took about an hour for the sedative to work and it almost had an opposite affect on him. Instead of getting sleepy he got super squirrely and was yelling up a storm in the sound proof room but finally he crashed and they were able to get a successful test completed. As expected he has some minimal hearing loss in his right ear due to fluid behind his ear drum (this is the ear that they were unable to put a tube in) and his left ear (with the tube) is just fine! The craniofacial doc also said his cleft repair looks wonderful and lifted his restrictions except he is to not have his top gums brushed quite yet because he is still growing new gum tissue. She also felt that he would not require hearing aids to compensate for his right ear and felt he was OK for language and speech development!
Everything went downhill after we left Iowa City though. I picked Jacob up from daycare on our way home from IC and he was already wheezing. By 10 that night he sounded like an angry seal! I had finally made a decision to take him to the ER as he seemed to be getting worse and not better with a neb treatment and hanging out in the cold air. Jake and I jetted off to Mary Greeley and got in right away and within 30 minutes he had gotten a steroid shot and they sent us on our way. Fastest trip to the ER E-V-E-R!!!!! By Friday he still sounded like crud but it had turned into a nasty cold by Friday afternoon so we headed back to Fairbank/Waterloo for my nephew’s 7th bday party.
On Saturday Evan was invited to Phillip’s friends party at the bowling alley and he had a great time. It was really sweet, Phil gave Evan a little bowling lessen before he went. They looked so grown up! We ended up having to ask for a kids ramp since the gate would drop in front of the pins before Evan’s ball made it down the lane! He had fun though. I had to interrupt him a couple of times during the pizza as he kept trying to tell Phillip all about the rollercoaster we had bought him that he hadn't opened up yet. Poor guy he was so excited he couldn’t contain it!
Afterwards Shelly, Phil, Evan and I went to my favorite restaurant in Cedar Falls, “Peppers” and ate some yummy chicken fingers and shrimp..YUM-O! Then Evan and I headed to Great Gma and Gpa Boesen’s house and he cleaned them out of every Kit-Kat they had in their house!
As you may have guessed it, late Saturday Braden started feeling like crap and was crabbing whenever anyone looked at him or if Jacob even made a peep. Every time Jacob coughed Braden threw himself into a hissy fit and could not be calmed down. Fast forward to today and he woke up around 2 am with a breath rate/respirations of 75 breaths/minute (normally 40-45), heart rate of 180 (resting HR usually 130-145), oxygen saturation of low 90s/high 80s (usually 96-100) and a fever of 103. Poor dude was not very happy. Plus his secretions were starting to turn a nasty yellow color. Adam and our nurse took a trache aspirate and he drove it down to Blank Children’s hospital to culture. We were also able to get him into his pediatrician today and he is now on amoxicillin until the cultures come back and on a stronger dose of albuterol. He seems to be doing a little better while the Motrin controls his fever but he’s still really junky in his lungs. Hoping whatever this is it passes quickly!
Not much else to report here on the home front since we are all very sleep deprived!
Please send prayers and healing thoughts to the Diallo Family as they try to heal from the loss of their sweet boy Oumar. He was a Campomelic brother to Braden and all the other CD kiddos. He sadly passed away on his first birthday due to complications from his severe bronchomalaysia. He had recurrent episodes where he stopped breathing and this last time they were able to get him back but he had suffered irreparable brain damage. Amazingly he was taken off life support and breathed on his own a full week when he had never been able to for more than 2 minutes before. His parents are at peace knowing Oumar fought to the end but they are still reeling from the loss of their sweet little boy. Please send prayers for healing and comfort to them if you can.
And finally here are some of our family pictures as promised as well since Pam is awesome and got them in the mail so quickly :) We are also looking forward to this Thursday at the Byersdorfer house…it’s a HUGE milestone for B and us…Thursday will be Braden’s 1 year anniversary of being HOME! Hoping this bug doesn’t keep us from celebrating this major event!