Easton Beaston has been so busy, and continues to cause trouble left and right!
We ended our 19 day stay at Children's hospital on Friday Aug 3rd. Easton had a PICC line where he got TPN, which is nutrition VIA the bloodstream, and his tube feedings. He was struggling a lot with his tube feedings. Pain, vomiting, and sleepless nights were the new normal. His goal rate for his tube feedings was 34mL per hour. We left the hospital at 12mL an hour, which is why he was supplementing with the TPN. VERY slowly increasing the tube feedings and a strict new medicine regimen seemed to be helping, until it didn't.
We were home for over a week before things started going south. He had gained almost a pound and was seeming more like the Easton we all love! Then he had an "episode" as we like to call them. Extremely high heart rate during sleep, flushes and sweating, and vomiting. From that night on, things went down hill. He started being uncomfortable, vomiting more than he was taking in, and not sleeping. Consulting with the on call docs through the weekend we decided to give him gut rest. At the time, this seemed to help. In the long run, this was VERY bad.
By Monday, he was dehydrated and lethargic. I took him to the Grand Itasca ER and he got a bolus of fluids with hopes he would start to tolerate his feeds the next day. He didn't (shocker).
By Tuesday, he slept until 8:30am, was awake for an hour, slept another five hours, was awake for an hour, and fell back asleep. I decided to take him back to the ER and Auntie Samantha accompanied us! Later we were joined by my mom and my aunt (who brought some much needed peanut m&ms!)
While there, we learned his blood sugar was dangerously low, at 44. An expectable range is more in the 70-100 area. They were giving him a bolus of fluids with extra sugar to help that come up. If it did not improve, we would be taken to a larger hospital. After an hour his blood sugar was even lower, 32. Now, they had to do all they could to bring this up! They gave some really strong glucose to bring his blood sugar up quickly for transport. It did come up a bit, into the 50's. This was a safe level for us to be moved at. in other words, he was stable. So Easton and I were loaded into an ambulance, and sent on a bumpy ride.
You may have seen that we choose not to go back to Children's Minneapolis. Instead, we went to University of Minnesota Children's Masonic. Our last stay at Children's was long and full of a lot of angst. I didn't feel they listened or recognized my concerns nor looked at the whole picture. The nursing staff was amazing at children's but the level of care we needed was just not there. We had scheduled a second opinion visit at U of m Masonic anyways, so we just speed up that process!
We arrived at Masonic after a LONG ambulance ride on Wednesday at about 2am. Easton slept the whole time and was such a trooper.
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