In the past few weeks it has been crazy! Easton went camping for the first time which was a bundle of fun!
After that he needed some care on his tube, so we had a stay at Children's Minneapolis. In this stay he got his mickey button! This is a huge relief. No more clogs, no more popsicle stick, no more hanging out tubes! He left the hospital at 13lbs which is a huge milestone.
Since then, things have gotten a little... rocky. to say the least.
Monday, July 16th
Sunday night, Easton began struggling with his feeds. He was having some pain. It escalated through the night and by Monday morning he was on Pedialyte. We struggled with Pedialyte through the day. Around 5pm he could no longer tolerate this and we went to the Grand Rapids ER per our GI's request. We checked for infections and tube placement. 4 hours later, we had to leave for Children's Minneapolis. Easton and I set out on the loooooong ride around 10pm. My wonderful sister and mom let me rest all the way to Moose Lake before we split ways!
Tuesday, July 17th
At 1:30AM Easton and I rolled into the Children's Minneapolis Blue Ramp Parking Garage. We then walked into a very, very full ER. 3 hour wait time.. We sat until about 4am and finally got a room. Easton's blood sugar had sunk dangerously low and he was hypoglycemic. Because of this, we were not admitted straight to the 6th floor. Instead, we were held in the ER while his levels were tested every hour until it was at an acceptable level. We were then admitted to the 6th floor general admission.
Wednesday, July 18th- Friday, July 20th
Everyday we tried to restart his feeding with pedialyte. This escalated from pain with feeds to vomiting and breaking out in hives and rashes. After losing some weight, he was put on TPN. TPN is nutrition VIA the bloodstream. Ideally this is given through a PICC line which is a larger IV. However, this involves anesthesia and we could not get this done Friday. So, we started a modified lower dose of TPN through his IV. We are trying a concotion of meds to help with his feeding intolerance. It is all a balancing game.
The Weekend
The weekend was full of TPN, attempting unsuccessful at restarting feeds, and turning Easton into a human pin cushion. About every 24 hours we had to place a new IV. Which for Easton involves 4-6 attempts at placing an IV. He also has to have blood drawn every day for labs due to the risks of TPN. We did get a visit from Uncle Matt and Auntie Samantha as well!
Monday, July 23rd
Another rough day, which another rough IV loss. I am writing this post late Monday night and Easton is asleep. His feeds are currently running semi-unsuccessfully at 5mL an hour. Keep in mind his regular rate is 34mL an hour... so we are no where close! As of 11:46pm we also still have no IV as he has almost no viable veins left... who knows what is going to happen there.
Soooo....
Normally I don't say these kinds of things because I try to be a very optimistic and strong person. If not for myself, for Easton. But DANG IT this is frustrating. First, hospitals can take forever, FOREVER, to get anything done. Things get lost in communication and I really have to advocate hard for Easton. Second, doctors don't always take me seriously. Might be because I look like I am 12 some days. But they should. I really do know a lot! Third, hospitals are driving me CRAZY! We have been in and out so much BUT we have so many good things coming! However, Easton HAS been getting so strong on TPN! He can sit unsupported for almost a full minute and rolled over for the first time!
Bless you and that little fighter! I'm so sorry he has to go thru all of this. Keep doing what you need to and follow your gut!