Sunday, October 30, 2011

Cleft palate repair, pumpkin patch, and trick-or-treating OH MY…

Sorry this is a long overdue update. On October 18th, Braden went in for his cleft palate repair surgery in IC and we have been on the go ever since! I would have loved to say that his cleft repair was uneventful but it was anything but! OK, so that’s not fair, his cleft repair was uneventful, it was the disaster leading up to it that wasn’t!

On Sunday we dropped the boys off at my parents in Waterloo and on Monday headed to IC for his pre-op appointment. Everything was going great. We were scheduled for surgery, had just checked into the hotel and headed to Old Chicago to eat dinner with Uncle Caleb and Rosie. He hadn’t finished eating in the room when Uncle Caleb arrived so we loaded the feeding pump/bag up and headed to eat. While we were ordering I didn’t know that Adam had wrapped Braden’s feeding tube around the back of his stroller to keep it off the ground. In my infinite wisdom, I decided Braden would be better suited sitting on my lap so I just went and grabbed him and in the process, ripped his G-tube right out of his belly :( If you know anything about Braden’s G-tube you know that it is not the balloon type and is VERY difficult to remove it…that is unless there is enough tension on his feeding line. UGH I was so mad/upset with myself. He cried for about 30 seconds and then just snuggled into me for the rest of the nights activities. We missed dinner, tapped a gauze pad to his hole in his tummy, and rushed to the ER at the U of I Hospitals. Thankfully they got us in right away to keep him away from all the sick kids in the waiting room.  Unfortunately, no on in the ER knew how to put in his G-tube.(Now we know they probably could have got it in but his tract in his tummy is so tight/scarred it needed to be stretched to get the new one in) Anyways, I digress. We ended up spending 3.5 hrs in the ER and they found a balloon Mic-Key and put it in. I think we got back to the hotel at 11pm with a surgery check in at 6 am the next morning.

On to the morning of surgery. We were unpacking everything to bring Braden into the hospital for his surgery admission and while Adam was burping Braden’s G-tube it fell out…AGAIN! So again we were rushing back into the hospital to tell them that they needed to fix this prior to surgery. Long story short, the ER doc filled the balloon with air and it should have been filled with water which is why it fell out. The anesthesiologist was able to put it back in, it was causing Braden IMMENSE pain, he was freaking out,  I lost it and immediately started crying when the head anesthesiologist asked if I would be taking Braden back to the OR, she decided I wasn’t fit to go back there so I handed Braden off to Adam, then they opted to call a I surgeon to come in and put a new G-tube in correctly while he was sedated. It was beyond a mess in the hour leading up to his surgery!

His surgery lasted 4.5 hours. They did an awesome job of calling us every 45 minutes to keep us updated on the progress. 30 minutes before they brought him up, the head RT came down and got us from the surgery waiting room to have us set up his home vent to save us some money on using a hospital vent and get his room ready before they brought him up. They were unable to work in his mouth like they thought due to the small size of his mouth so they ended up having to cut into his hard palate and work front to back to close it up. They were only able to get one tube in one ear as the other ear was far to small for the smallest tube to fit. They also clipped his tongue. There was one small hiccup in the entire procedure though. He was originally given gas through his vent to keep him sedated. With the way his head was angled back, his trache stoma was being stretched so he had a pretty significant leak around his trache. He was able to stay ventilated but the surgeon was starting to get sleepy due to the whiffs of anesthesia she was getting thru Braden’s leak. They decided to put an IV in from there and things went off without a hitch!

I was very nervous for when he awoke from surgery as they had warned us some kids don’t react well from coming out of anesthesia. Well, Braden was the EXACT opposite. He woke up extremely happy, was smiling, licking his lips like crazy and was talking to us. What a relief! He wasn’t a big fan of his arm band restraints but he quickly got used to them. They kept him well drugged up so he slept the rest of the day and night and we were out of there by 2 the next day!

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OK, you all know Adam and I and how much we love the Cyclones and despise all things Hawkeye. But, I will tell you that the University of Iowa Children’s hospital is BY FAR one of the best hospitals we have ever stayed at. The staff if incredibly nice, easy going, listened to everything we asked and had Braden’s best interests in mind at all times. They let us do everything we do for him at home, no questions asked. When he looked in pain, they had meds waiting for him. They set us up with a Care Coordinator who took on our family and will be working with all the doctors to try and schedule as many doctor visits in one day to minimize our travel time. They sent the head RT into our room to discuss home vents and things we should/could be doing for Braden. The surgical team visited Braden 3 times in the day and a half we were there and we never ONCE felt like they didn’t have a grasp on his/our situation. Not to mention their PICU rooms were fairly large, they had a family locker room with 2 showers, and were just an amazing medical staff to work with! It really made it a pleasurable experience when it almost certainly would not be!

The boys had a great time at my parents so a BIG THANKS goes out to them for watching them for 3 days while we were in IC. I hear they were great for them! They napped, went to bed without issue and ate everything put in front of them (something the NEVER do for us!) what suck-ups ;)

Braden has done remarkably well recovery from this surgery. You would never know his entire mouth was hacked up! As long as he Ibuprofen every 6 hours he was relatively happy. Unfortunately he seemed to be in the most pain from his new G-tube. He was very irritable and gassy and we were unable to burp him like we had with the non-balloon G-tube. We finally convinced our regular GI doc in DSM to change it out to the non-balloon and he got that done on Thursday. Poor baby, he was in a ton of pain since they had to stretch the scar tissue in his tummy to get it to fit but it has done WONDERS for him! He no longer is irritable/crabby and we are able to help him relieve gas so we are back to having our happy baby back!

So now on to fun things. Last Saturday my cousin Sara and her boyfriend Jordan (or “Georgia” as Evan calls him) had two free tickets to the ISU/Texas A&M football game so they invited Evan and I to go with them. It was awesome! Sara’s company has a suite so we got to experience living the good life! Nothing beats ISU football, beautiful fall weather, and OH YEAH…FREE BEER ALL THRU THE GAME!!!! BIG THANKS to Sara and Jordan for letting me have a much needed break! Love you guys!

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Last Sunday we took the WHOLE ENTIRE family to the pumpkin patch. It was pretty surreal having us all there. Last year it was just Jake and Evan and we went straight to the NICU after to visit Braden and bring him his pumpkin. How awesome for him to be able to enjoy it this year as well! It was pretty windy but after a few minutes Braden adjusted just fine! Thankfully Aunt Wendy went with us again this year and helped coral the boys! We spent about 4 hours there and had a great time!

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Yesterday we did family pictures at Greenwood park in DSM and from the sneak peeks I got, they are going to be great! More to come when we get them back!

Today we met the Hopp family and all went to Night Eyes at the Blank Park zoo. The boys had a blast! We had the entire superhero crew with us. Jacob-Spiderman, Braden-Superman, Evan-Batman, Caleb-Wolverine, and Grady-Capt. America. They were adorable! The boys had a great time watching the otters, playing on the playground, and getting candy. Braden even got to play on the playset and LOVED chasing the other kids with daddy! Hope everyone has a great Halloween and were able to enjoy the last few warm weekends of the fall!

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