Progress

March 9, 2020

Before we get to the news of today how about a recap of the last few days.

Saturday Olly was experiencing some more pain plus we had some concerns with her feeding tube/feeding rate. She was given a short break from her feeds, restarting at a low rate and worked back up to full feeds. This did the trick with the feeding rate. The pain however hung around and we are still working to get that managed.

The biggest news on Saturday was that mom and dad got to escape the hospital together for the night. We got to go out to dinner and to the Toby Mac concert before heading home and getting to both sleep in our own bed at the same for the first time in nearly two weeks.

Sunday was kind of a status quo day. It was really about hanging out until we had our care conference this morning. We did lunch as a family and Mara got to come hang out for a while until we noticed she felt warm. We got her out of here pretty quick after that dad and her headed for home and mom had overnight duty. Mara turned out to have a 103.1 temp and was tired and complained of a headache. She was still a little high but overall feeling way better this morning.

Now on to the Care Conference and we are officially staying another week. Wait and see approach, will test more if she presents more intussusception issues or pain episodes. Still having many seizures so playing with dosages.

Starting Keto today (actually just started it as I was writing) and will take 5 days (best case scenario) to get her fully on it. Converting her meds to Keto friendly (carb free) meds which mostly requires pill form meds and crushing them up, mixing with water, and giving in her G-Tube.

Got the next round of paperwork to get nursing care for Olly at home done. It has become increasingly clear that we need help managing Olly’s care at home and that it should come from trained professionals, hopefully helping us to avoid some trips to the doctor and hospital and helping mom and dad stay sane. Doctors are writing letters to the county to try and expedite the process. Everyone here has been pretty surprised that we don’t have anything in place yet but there is so much red tape it is actually mind boggling.

A couple things before wrapping up for the day. We have talked a lot looking for the miracles in our situation. Today some of those were reaffirmed and made clear to us. First our support system is amazing. Today more freezer meals were dropped off at home, the dogs were taken for a walk, the house was cleaned and bedding was washed. We asked for none of that, just friends seeing a need and acting.

Secondly our staff here at M Health University of Minnesota Children’s Masonic Hospital (P.S. they need a shorter name) is amazing the team of doctors we have, has truly made us feel part of the process not just a spectator. Our nurses are such a blessing and are so good at making sure we know what is going on and helping to get us answers to questions and jut being that calming voice when we need it, getting a smile out of when we need it, and caring about almost as much as Olly. Our nurse assists, you know the ones who have to come in and change diapers (blowouts), help with baths, check for blood sugars (poke Olly) and have to deal with Nate and still come back in. We appreciate all of you so much. Olly likes you all so much she keeps wanting to come back.

Prayers for a smooth transition to Keto and a calm and restful week.

P.S. Shirt Sales close Sunday. Order yours today before it is too late.