Jackson's Journey

Well I'm going to do my best to give you an update on Jackson AKA the "MONSTER".

As of tonight we still remain in the pediatric intensive Care unit with a rather interesting/stressful/and all out just a blank minded day.

Since the posts last evening Jackson decided that he wasn't getting enough attention from the nurses in the PICU. So last night just after Michelle and I left we received a call from the resident doctor in the pediatric unit stating that Jackson decided he was going to stop breathing and make all the nurses work and give him CPR last night he was down for about 25 seconds but they were able to get them back and then he was fine well as fine as he can be. Shift change occurred with the nursing staff and medical staff around 7:00 a.m. this morning and Michelle and I are walking into another clinic to get covid tested and we receive a phone call that Jackson needed more attention from the nurses so he decided to code again and this time he was down for about 45 seconds.

So before we arrive back at Jackson's room they had gotten him back and ended up putting a feeding tube in through his nose and when we got back they were doing a chest x-ray to see if the feeding tube was placed in the right place. And found that he also had a hernia in his stomach.

So today he had another scope and this was to try and get through the remaining part of his GI tract into his stomach and into his lower intestine and they were able to do it with some different equipment today. Unfortunately they found stuff that they really weren't expecting to find. Basically, before his feed tube reaches his stomach it has two things going on. One, as it gets closer to the stomach his feed tube actually kind of balloons out towards his windpipe from the back and this is also contributing to the egg shaped windpipe. So from where it balloons out and continues to the stomach it starts to narrow down to a very small opening before it gets to the stomach, which is restricting this from going into his stomach. They were able to dialate this are to get it to open some, but the concern is that it is only going to shrink closed again. His food pipe is extremely irritated and now we have to get him food without it going through his mouth and down normal like everyone else, so this area needs to have time to heal and we need to see what this constricted opening does.

So as of now the down and skinny of what is happening is he now has a feeding tube going through his nose and directly into his upper intestinal track and a central line was placed in his neck to help feed his body the nutrients it needs right now and also so they can do blood draws without poking him as we found out that keeping him calm and relaxed is top priority because the last two episodes came on during a diaper change and a bottle feeding. He will also continue have his oxygen, heart and other vitals constantly checked. And he does get out on oxygen pretty regularly.

Now it is a waiting game. He is not scheduled for another major procedure until December 30th and that is another scope to check and see how the dialation of his feeding tube held up so they can decide how to proceed on January 3, 2022 as that is when he is scheduled for surgery to work on all the issues that have been found so far.

So now it is keeping him on medications to keep him cool and calm and constant care by medical staff to feed him and keep him nourished so he does not code again. And we were also told before we are able to go home his airway would have to be having no issues and they believe there is more of a chance than not that he will have to come home with a "G" tube to be fed for an unknown amount of time, but not permanent and lots of follow up appointments and tests to follow most likely in Rochester.

Unfortunately we are not out of the woods and this is not going to be a quick fix and as of today Michelle and I will be staying at the Ronald McDonald House. Both of us will be staying here together through the surgery and then at some point after that Michelle will be staying in Rochester with him and hopefully I will be able to go home at least part time and be here part-time as well until Jackson is able to go home sometime in the unknown future.

Well things are going as good as can be expected here in Rochester.

We did meet with doctors again this morning. And we asked a tough question for going forward that I believe Michelle and I already knew what the answer was going to be. We wanted to know for planning purposes how long they were expecting Jackson to be staying in the hospital following Mondays surgery since they're only going in to hopefully fix the arterial issue at this time and nothing with the GI system and those issues as of yet. And the answer and timeline we got at this point is "weeks". And even once we do get home Michelle will not be returning to work yet as we were hoping because of the follow up appointments and doctors visits they anticipate he is going to need and the additional care he will require for some time.

So with that being said we have pretty much got most things in place for the most part. But the one area that we still worry about is those day to day and monthly bills. People have brought up about holding a benefit to help out of some sort but with all the concerns of COVID we do not feel that is an avenue to go at this time.

So for those that have asked and keep asking this is the area we need the most help right now. And through some brainstorming we have come up with a few different options for people to try and help out this way. First any monetary donations could be hand delivered or mailed to either my parents Jim and Diane Kangas or to Michelle's parents Julie Ebler or Dick Ebler. And the other way would be to go to any of the security bank locations (Ridgeland, Dallas, New Auburn) and request a prepaid card and if you tell the bank what you want the card for they will waive all fees associated with his. Anyone wishing to mail something please ask Michelle, our parents or myself for an address and we will be happy to provide it.

This is really the only need we have now as I will not leave Michelle to deal with all of this alone at this point as that is a huge task and more stress than one person alone could handle. At some point when we are not dealing with such large issues I will go back home to work and come down to Rochester on my days off. But until then we will continue facing this Journey of Jackson's together with both his parents by his side. Thank you to everyone who continues to follow "Jackson's Journey", and help support us as we continue this journey with him.