Hello people! I know I have been pretty quiet about what has been going on with Easton during this stay, but I thought I’d give you an update. These last two weeks inpatient have been the hardest, most challenging weeks but we have made such big steps! The last 14 days have been full of tears, both happy and sad ones. So much has happened- good and bad- so I’ll just give you a quick overview.
-We worked with the Hematology team to up Easton‘s dose of Lovenox- his blood thinner to see if that would dissolve the clots. It did not. We have however upped the dose to a level where the clots are no longer growing. To do this though, his dose is very high for someone his size.
- It was decided Easton’s PICC has to come out due to clotting and it wouldn’t be safe for him to have a line or port at home right now. For this to happen he had to be get his nutrition fully from his tube feeds. This involved upping his rate, which he didn’t tolerate very well.
-We tried upping his rate slowly. A few mL over the course of a day. This made Easton vomit and spit up more. he was throwing up 5-8 times a day, which sounds like a lot.
-Then we had a new doctor come in, one I am no longer a fan of. He decided that Easton’s line needed to come out ASAP. So, he upped Easton’s feeding rate from 19 to 30mL/hr. Easton was throwing up every 15 min for 24hrs. Not a fun day for either of us. This particular doctor was really rude the next day and just generally wasn’t working with me as a care team to make Easton more comfortable. Me and this doctor butted heads for a whole week and it made things pretty miserable. Luckily, Easton stopped throwing up eventually.
-We took the next two days to up Easton’s rate from 30 to 40mL/hr slowly. This is Easton’s goal rate to gain weight. He did much better with this slower increase. He also needed around the clock nausea meds and his G tube had to be vented to gravity (This means his stomach contents would flow out into a diaper instead of him throwing it up).
-On Monday, Easton’s PICC got his pulled out! It was so exciting! Ideally, we would have liked to leave it longer, but it had clotted off and stopped working completely, and since he didn’t need it anymore, it could come out!
-Easton took his first real bath in awhile!! (With his PICC we Could only do sponge baths most of the time).
-Easton had a swallow study done. He is still aspirating, but the team here would like to look more into the structure of his throat and why he is aspirating. This was looked at previously at Children‘s Minneapolis, but the team here at the U of M wants to take another look. They are currently reviewing all his records.
-Some of Easton’s labs are still alittle elevated, particularly his Phosphorus. We will see how those labs develop.
-Easton is also not gaining weight. This is one of our requirements to go home. He gains for a day and then loses it overnight.
So we have made a ton of progres, but still have some goals to meet to go home! Thank you all for supporting us through this tough time💕
Easton was also a cow for Hallowee, if you didn’t already see these adorable hospital pics 😍
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