Surgery

Last week was a long week for the Overberg family. On Sunday night, William stopped breathing and I started CPR while Brian called 911. After 1 and 1/2 rounds of compressions, and 1 round of rescue breaths, William started breathe again. We went by ambulance to Cardinal Glennon and stayed the night for observation. It was to the point where I wasn't sure the CPR would recessitate William; I thought I would only maintain him until the paramedics got here. Thankfully, he came to and was okay by the time they came.

On Monday, William was scheduled for a CT Scan to see if his aorta was compressing his trachea - the surgeon wanted to confirm before he performed surgery. After the CT Scan results came in, the surgeon decided to move his surgery up to Tuesday (it was scheduled for Wednesday).

Tuesday was a long day waiting for surgery. William was a trooper and made it all day without eating - thankfully he slept most of the day. Brian and I took him for a walk around the floor late in the day and he made lots of friends with the nurses! At 6:00 we went to the OR waiting room and handed him to the surgical nurse. Even though we knew the surgery was needed and we knew it was a level 1 heart surgery; it's still hard to hand your child to a surgical nurse.

At 7:30 we received an update from one of the nurses that William was out and they made the incision. At 8:22, the surgeon came out and told us he was done and William did great during the surgery. He did a bronchoscopy before and after the surgery and it looked like the surgery was successful. We won't know for a few weeks after surgery - due to swelling and irritation of his trachea - if the surgery will help his blue spells. (Something we learned while in the hospital was that blue spells typically mean a spell where the child holds their breath, passes out, but comes to on their own. William has dying spells - he needs assistance to start breathing again) After the surgery, William went to PICU to recover.

Tuesday night was a quiet night for William but Wednesday was a tough day for him. He had 4 more spells and was given a light sedative that wouldn't affect his breathing and would keep him off the ventilator. This helped him to sleep throughout most of the day and recover.

William did well the rest of the week and on Friday, he was released from PICU and got his own room :) He had a restless night but was doing well so on Saturday, he got to come home!

Tomorrow it will be 2 weeks since his surgery and he has been doing so great. The aortopexy has made such a huge difference in his life - he can breathe without straining and being dusky or turning blue. He can sit up for longer than a few seconds and is so happy!!

We can't thank our families enough for all the support they gave during his surgery week. Norah and Bella had a great week and were surrounded by loved ones - which helped it be much less scary for them. We love you!

Surgery

This Wednesday, William will have the aortopexy surgery at Cardinal Glennon in St. Louis. We found a surgeon there who was highly recommended by William's pediatric surgeon, the doctor who treated Brian when he had leukemia, William's OT, and has performed the aortopexy on another child we know through the EA/TEF community. His name is Dr. Huddleston and he was at STL Children's up until a few weeks ago. We met with him last Monday and were encouraged with the information he gave and feel it's the best decision for William.

One of the big reasons we chose Dr. Huddleston is that Dr. Coln (William's ped. surgeon) can do surgery at Glennon too - and he is able to perform the dilation we heard about at Boston Children's. So, Dr. Coln will go in first and cut a "shelf" that is part of the scar tissue in the esophagus and then Dr. Huddleston will go in and perform the aortopexy.

The recovery time frame is typically 3-4 nights in the hospital with careful care at home afterwards. Hopefully all goes well and William is home by next week.

We appreciate all the prayers and ask that you continue to pray. They mean more to us than you know.

Going Home!!!

We received wonderful news this afternoon that William was able to be released. Thanks to his amazing nurse (Kathy had him yesterday and switched with another nurse to have William today!), the doctor's agreed to have him stay until 6 pm this evening (24 hours after the blue spell). The surgeon had genuine concern over letting William go home as his Tracheomalacia is considered life-threatening. Since we've been through numerous blue spells with William and are CPR certified, they agreed to release him.

We are heading home tomorrow and are going to meet my parents in Niagara Falls for the night. It's on one of the routes home and will be good to see them!

Brian has already been on the phone talking to surgeons about the aortopexy and the 2nd dilation. We met one surgeon we both liked at STL Children's who can do the aortopexy but we haven't talked to anyone yet about the type of dilation the surgeon in Boston suggested. If it can't be done in St. Louis, William and I will head back and have the procedure done here.

We are so grateful to the Lord for the guidance he gave us by directing us to such an amazing team of doctors. We feel like there is a good plan ahead for William to be able to breathe better and not have so many troubles down the line when it comes to eating. If it weren't for the knowledge and specialization of the team at Boston Children's; we wouldn't be in this new position.

As Brian mentioned, we are extremely thankful for our families and friends for their continued support for our family of 5.

William's Day of Procedures............

To those of you who read this regularly you may notice a different writing style and that is due to the fact that Emilie is not writing this post, it is her wonderful husband doing so……….

Today was William’s day of procedures as he had a scope done of his trachea, esophagus, and GI tract. He also had his esophagus dilated due to the narrowing or “stricture” at the sight his esophagus was originally repaired. The procedure started around 8:30 am and he was brought up to NICU around 10:30 am as he was beginning to wake up from the anesthesia and was complaining quietly as he was wheeled in.

After they got him more or less settled in he began to wake up more and get back to his old self as he managed to remove his own IV causing quite a mess as well as kicking out of his pulse-ox band all while making countless friends on the floor. I have to give him credit that given everything he has gone through already he has to be one of the happiest babies out there and he knows how to use his smile already to win everyone over.

As a result of the procedures it became clear that William will more than likely need to have the aortopexy surgery to help open up his trachea as it was collapsing on itself even while he was calm. He is also going to need to have at least 2 – 3 more dilatations of his esophagus in order to help him as he begins to eat more solid foods. Fortunately these procedures can be done back home while the chance still exists for another return trip out to Boston further down the line.

While William and Emilie were at the hospital, the girls and I went for their first taxi ride to the hospital which was a thrill for them, although it lost out to the ferry and subway ride (we will post about that later with pictures) from yesterday. The girls have been great given the complete state of chaos this trip has essentially been as we have been gone since last Friday and they just keep up just as if this is normal for our family.

We are hopeful that William will be released from the hospital tomorrow, although he did have another blue spell earlier today and they mentioned that may cause them to want to keep him another night as a precaution but we will have to see what ends up happening with that. Ideally we will be packed up and back on the road on Friday but that remains to be seen.

I did want to say too that we have been truly blessed with the support we have received from both our family and friends throughout everything. Those thoughts and well wishes, along with the endless prayers have gotten us through a lot and made what could be a very trying and stressful situation easier to go through.

Until the next post, PEACE OUT…………………………………………………….