I seem to always start these with something along the lines of "life has been so busy". I've come to realize that this is just our regular level of busy!
For those of you who don't know, my family is no longer allowed to plan ANYTHING. Friday, my siblings and I were going to have a siblings night. We had it planned for a couple of days. Because we planned something we were just asking for something to go wrong.
Friday at 3, Easton had a check in at the infusion clinic. He looked super good, got a quick PICC dressing change, and we were on our way to my mom's! We got there around 4, Easton slept until 4:30, and by 4:45 was acting strange. He was lethargic, extremely fussy, breathing quickly, and warm. Of course, I forgot my thermometer at home and my mom didn't have one. Uncle Matt came to the rescue and brought one around 5. By then warm had turned to burning up and I didn't need a thermometer to tell you we were headed to the ER again. We did check, and under his arm was 103.5 degrees. So, off to the ER we went.
Samantha got to live out her dream and be an ambulance driver. We set off on the quick 15 min ride to the ER and about 10 min away Easton started gasping, holding his breath, and acting very strange. We drove with our hazards on the rest of the way. **Perks of living in a small town, people actually pulled over for us!** We got to the ER and were admitted quickly. Fever was 104, heartrate was fluctuating between 220-240bpm even reaching as high as 255bpm at times. Yes, you read that right. Just like last time, after Tylenol, his fever and heartrate started to come down and we got ready for transfer.
Storms kept us from flying to the U of M right away, so we took a helicopter to Duluth. Our helicopter ride was fairly uneventful, we got a very up close view of the storm and landed minutes before Duluth got hit with all the rain!
I'm not going to get into our stay at the Duluth hospital, as it was not a pleasant one. It involved a "sassy" resident (I won't express my real feelings about him), a shared room, and a looong wait for an ambulance. Around 4am we departed for the U of M Masonic Children's by ambulance.
We arrived Saturday morning at 6am and were admitted to the 5th floor. It was confirmed from his blood cultures that he had another infection. He was put on a few different antibiotics until they could pinpoint the exact type of infection. Now, like most other places, not a ton of progress happens on the weekends at hospitals. You don't see your regular team, you usually only see one or two docs, and you just try to coast to Monday. We had some doctors who weren't super familiar with Easton's case and thought they could get him on full J tube feeds so we could just pull the PICC. This may seem reasonable, but for me, it was laughable. We were running his continuous J tube feeds at 11mL/hr. His "full feed/goal" rate was 40mL/hr. Their plan was to go up 2mL/hr ever 4 hours (Ex. 8pm-midnight run at 11mL/hr, midnight-4am run at 13mL/hr, etc). I told them they were welcome to try, but it wouldn't work. He is too volume sensitive and wont tolerate it.
Just a hint on what happens next: I was right.
Easton started gagging, vomiting, and was very uncomfortable VERY quickly. And for anyone who says "babies just spit up sometimes", find me a baby who's spit up can make it across a room!
The residents quickly realized it wasn't working, and they tried to advance slightly slower rate However, I still said it would be too fast, and I was still right!
I'll save you the repetition, this happened until Monday morning. By then, we were at a stand still with his feeds at 15mL/hr. A long way from 40. He was still on an antibiotic called Vancomycin. After some labs, they decided to up his dose a lot, he has a pretty nasty infection.
Our team wanted to try one more time to increase J tube feeds. Just from 15mL/hr to 16mL/hr. Now, in most kids that wouldn't faze them. It is a few more drops an hour. It is clear though, that Easton isn't MOST kids. Again, I said we could try but I was doubtful.
About an hour after we increased feeds, Easton started vomiting. Then he vomited 3 more times in 45 min. Our team came back in and they all admitted...
I WAS RIGHT
Now, that isn't to toot my own horn or bloat, I just know my kid. I wish I was wrong. There is a reason we are on TPN and have a PICC, he just can't tolerate his feedings right now for some reason. Yes, a PICC comes with high risk of infection but we don't have another choice right now.
So, we decided we would go home on very strong antibiotics and see what happens. If he gets another infection, we may have to stay in the hospital longer. No one knows what the future holds though, but for now, we are home again!
Hospitals are not historically FUN places, but U of M does a really great job at creating fun experiences. We met Adam Thielen, from the Vikings!!! We got to attend his press conference where he and his wife announce the Thielen Foundation and its newest project at U of M Masonic Children's. It is a really amazing foundation and I highly suggest you check it out! Easton even got a signed ball and hat!
We are once again settled at home and loving it! We of course are taking a ton of precautions with germs and such, but really loving being home again!
A HUGE thank you to all who continue to support me and Easton! I can not thank you enough and don't know what I would do without such a wonderful support system!
Lots of love,
Easton and Emma
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