Discharge and Move out of RMH

Steele was put on "NG Surveallance" for 24 hours at LPCH 3 West to make sure he could tolerate the naso-gastric tube, and discharged for the second time on Monday, December 7th. Less stress this time with the discharge process and we headed back to RMH for the evening. This discharge felt right after the whole trauma with the Emergency Department. For Rachel and I, it was a very good hurdle for all of us to overcome. Unlike the other (deeper) feeding tube he was discharged with a few days ago, Rachel and I are very familiar with how to place the tube if Steele decides to gamble the "rip out" option, the payoff is not worth it Steele.

Steele is on 10 different medications that are delivered every 3 hours along with a continuous feed cycle in between the medications. Patients with his condition often have reflux problems, which is true with Steele. He will spit up between 4-6 times per day in small amounts. I have talked to several parents at RMH and LPCH whom have children with Steele's condition, and they all agree that this is an issue until the Glenn surgery takes over his physiology. Everyday he is weighed and measured for blood oxygen saturation levels. These are recorded and reported to our new outpatient cardiology clinic nurse practioner (NP) every week. Very similar to OHSU's weekly protocols when he was discharged back in August. We have not been given daily goals or loss danger zones, but we are familiar with both sets and when to take measures if his diet and medications are not going well.

Rachel and I decided that the 150 sq/ft at RMH was just a smudge shy of the adequate space we needed for 2 grown adults, a wild and crazy 4.5 year old, and a nearly 6 month old baby with more gear than an Everest Expedition. We contacted our Kaiser Social Worker who put us in contact with the local housing travel coordinator (TC) that sources outpatients with temporary housing. Rachel and the TC were able to secure us a 2 bedroom 2 bath apartment in Menlo Park, it's about 10 minutes from the hospital.

Tuesday (12/8) Drop Ryleigh off at school and begin the move out of RMH into the Menlo Park Apartment. This was a bitter sweet deal; RMH has so many amenities for each family, but we just could not simply live in that room anymore. RMH does not have a larger family room available at the moment, so the choice was pretty simple, but sad. We still have access to RMH with a daypass, which means we have access to all of its resources minus the sleeping arrangements. Rachel and I got Steele moved in first and settled while she watched him as I became the mover dude for the day. After several suitcases and containers later, it was time to call it a day. I'm not going to lie, it felt pretty damn good to come home to a residence where we had some space to spill out into and enjoy the comforts of our new dwelling. There was still some work to do on Wednesday at RMH, but not much left. Steele looked very stoked to be spending time with his family, so that means we were just as stoked for our new chapter here in CA. Our insurance will cover up to 80% of the rent. Rent = $4K a month. God, I miss PDX. Yes, you heard that right. 4,000 for a 2 brm with 2 bath apartment. Whoa!


Wednesday (12/9) Challenge: Get up with new sleep schedule, prepare medications for Steele, wake-up daughter, get daughter ready for school, eat, breathe, drink coffee. Prepare lunch for daughter, begin delivering medications to Steele, continue work on getting Ryleigh for school and departure, stay calm. Rachel making final decisions on medication delivery for Steele since there are 10. Pause. Collect Ryleigh and check for final inspection for delivery for school. Pause. Check with Rachel before leaving. Sip coffee while Ry gets her business together.

Stay well my friends. Thanks for following and contributing to our journey.