Adding our to Stay and Adventure

October 13, 2019

Olly is slowly coming back day by day!! Likely staying here longer than planned.... 

Waiting on results from blood work last night still, some results are in though. Basically her body is overproducing insulin and they don’t know why. It is not Tay-Sachs related. Meeting with endocrinologist tomorrow to review additional testing, possible medications (long term), emergency plans for sugar drops outside of the hospital and next steps. She will need blood sugar monitoring long term it seems. Bring on more supplies! 

We are also meeting with child life to discuss putting the g-tube in now during this hospital stay. It’s going to be safer for her (less risk of her pulling it out), easier to manage for us, and a very simple procedure. Possible we go home for a day or two depending on surgeons schedule and then come back for surgery. 

Current feeding tube is working well she went off the iv today and blood sugars are in the normal range with continuous tube feeding so far. More monitoring of that to see how long we can stay off iv. 

Pooping hasn’t happened yet today- probably another enema tonight to help get the poop out again. Miralax in feeding tube so hopefully we start getting more regular tomorrow. 

Still has a low grade fever (101) but Tylenol every 4hrs is keeping it controlled. 

Mara visited today and brought balloons for sissy. Olly was so happy to hear and see Mara. We went on a stroller ride today around the floor and also visited the play room. 

Swallow study will now happen Tuesday due to scheduling, so. It going home until Tuesday or Wednesday at best. Probably will change based on all the discussions tomorrow.

Lora is staying with Olly tonight and Nate and Mara headed home for the night. Trying make it as normal of a day for Mara as possible. 

Thank you for all of your prayers, meals, texts, visits and donations.

The Chapmans