G-tube & Discharge

Hello Friends,

Pre-op 7am waiting, waiting, waiting.....

Rachel and I brought Steele into OHSU on Tuesday (6/26) around 7am for surgery admit. After all the measurements and discussions with Anesthesia, Surgery Plan, and Recovery, Steele was off to the OR at 11am. He was given a sedative of Ketamine through his nose and 5 minutes later, he was whisked away through those double doors. It is still not easy to let your baby go, no matter how many time we have done this routine. Rachel and I took a walk and ate some food, which made us both feel more at ease. We sat outside and tried to relax waiting for the pager to buzz a message. Around 130 pm, we got a message to return to the waiting room to talk to the surgeon.

The surgeon came out and was very happy with how the procedure had gone. Steele had no issues with the anesthesia this time, but he had a small hernia in his lower right side of his groin. Nothing to worry about, but to just be aware of. There was also a small hole in his diaphragm that may cause him some discomfort when eating solid foods, but again, just watch for pain and vomiting. The area around the incision for the tube is also a big concern with infection and tugging. He will not be able to be submersed in water for about 2 weeks until the stitches dissolve and the incision has had time to heal around the tube. Apologies for the poor quality photo, Steele is getting very good with his hands.

All medications and nutrition will go through this "gas hose" from now on. His belly is still swollen from the surgery. He was so happy this morning not to have a tube in his nose!

Once he came out of anesthesia, we were there to greet him and hang out for about an hour before moving into the PICU for the evening. As soon as we all arrived in the PICU, a stream of greetings began to flow into our room from all our past doctors, surgeons, and nursing staff. It was really cool to see everyone again. The PICU is a pretty depressing place, but very familiar for Rachel and I, so good to be in a place that is not shocking at this point in the game. We got settled in and had some dinner in the room and I took off for the evening while Rachel stayed overnight.

I got a text from Rachel indicating that they were moving him to the "floor" around midnight. Good news! In the morning I headed over to his new room and help Rachel clock out and time for me to clock in. I worked with the cardiology team and nursing team to meet all of his feeding goals for the evening and plan discharge. I moved as quickly as possible to get the discharge orders written up, signed and rolling out of the unit at approximately 8:30pm. Best discharge to date, smooth quick and home by 9pm.

Steele slept all night long doing just fine with his new gas hose. You could tell in the morning that he was super stoked to not have the tube down his nose. It's amazing how plastic our minds are to realize the slight changes that are so monumental for our personal happiness. Steele.

We are are home now trying to manage the gas tube, yest that it what I cam officially calling it. Everything is going fine thus far, the biggest concern and infection and tug on his new toy.

Talk soon friends.

First Birthday & Gtube surgery

"I can't eat it yet, but it sure is fun to play with!" Thank you Auntie Katie for such a beautiful cake!!

Hello again friends of Steele! The blog has been in hibernation for a bit. I am going to start it back up again throughout the summer. Steele Jacobs Thwing had his first birthday on June 16th, 2016. We celebrated at Mt.Scott Park in SE Portland with some close family and friends under the cover of a tent and a tarp. Got to love the weather in Oregon. In addition to Steele's birthday, my father, Randy Thwing, and I hosted the annual father son rib-off competition in honor of Father's Day. After several hours of deliberation and pay-offs, the winner is: Brenden Thwing!!! Nice work Dad, it is always a pleasure grilling with you.

Steele has been through a journey that most will never travel along in their first year of life. Reflecting back on all the hospitals, surgeries, moves, multiple schools for Ryleigh, and infinite decisions that have been like a choose your own cardiac adventure novel. It's hard to believe a year has passed so quickly.

Steele had his monthly routine cardiology appointment at OHSU. His weight numbers were dropping and after a throat appointment to check his vocal chords for damage, we found out that the NG Tube was causing some inflammation. The decision was now to leave the tube in or have an elective surgery for a Gastrostomy tube (also called a G-tube). The G-tube inserted through the abdomen that delivers nutrition directly to the stomach. It's one of the ways doctors can make sure kids with trouble eating get the fluid and calories they need to grow. It is unusual for kids that are the same age as Steele still have an NG tube for nutrition.

Rachel and I discussed all the options around this surgery with Steele's Cardiology team and his SLP. The SLP would not continue working on his feeding due to the throat inflammation and the cardiology team wants to see better weight improvements. We decided that the surgery is necessary for his overall health and the ability to start eating without the NG tube. To be honest, we are at the end of our rope with the constant worry of the NG tube. We have to insert the tube through his nose 3-4 times a week, which is never a pleasant experience for everyone involved. Steele's prefrontal cortex is mapping memory, the trauma of the NG tubes benefits do not outweigh the overall function for his development and growth.

Steele goes back to OHSU tomorrow morning, June 28th, for surgery. We met with the surgeon last week to go over all the procedure risks. He will be admitted in the morning and hopefully discharged two or three days later. We will get to revisit all of our friends in OHSU PICU once again.

The butterflies start to flutter in our stomachs again. This surgery is not nearly as invasive as the previous two, but there is always a high risk with anesthesia and his heart condition. We just pray for the best outcome, it's never easy to send him through those double doors on the surgery floor however.

Here we go again friends of Steele. Please send out your prayers and good thoughts for him tomorrow!

Monday morning, say bye-bye to the NG tube!

Relaxing on a Monday morning. No more tube face tomorrow!

I will do my best to keep the blog updated. Thanks for all your support and love for Steele.