Keeping up with Four Joneses!

  Good afternoon!  Many of you are asking how Austin is doing so I thought it was time for a brief update! On Wednesday, he didn't make much progress and maybe even a step backwards.  However, on Thursday, we restarted his banana flakes (Banatrol) at 1/2 the amount he normally gets and also some additional free water.  He had a great day and his stools started to change in the right direction!  We've been able to go up by 3mL/hr on his enteral rate about every 3-6 hours.  He's currently at 45mL/hr of 1/2 formula and 1/2 pedialyte.  He is still getting 25mL/hr of IV fluid with 10% dextrose.  His blood sugars have been very stable in the 70's and 80's. The biggest challenge is he's bored and he has developed a dislike towards people in scrubs!  Ha!  They still think he's just the cutest even when he's yelling at them! Dr. Aru thinks we will be here through the weekend!  He explained to me yesterday that when a healthy adult gets the norovirus, it takes our

  Oh our little buddy Austin!  As hard as we tried, we couldn't keep him in a bubble and safe from the stomach bug that took down everyone in our family.  We spent Friday overnight (literally 9:30p-7:30a) in the ED at Children's.  We left Saturday morning thinking that with Zofran for nausea we would be able to increase his feeds back to normal and be all good.  Stopping the vomiting was one thing, but once the diarrhea started, there wasn't much we could do.  Austin quickly began to dehydrate due to malabsorption.  The formula we were giving him was going right through him without any nutritional value.  After a couple phone calls to the ED and MNGI and we were back to the ED.  Children's is AMAZING, they were ready for us and quickly assessed Austin.  Labs showed the dehydration and it was concluded that he was "dumping".  All they said was "you did the right thing by bringing him in when you did".  Thanks AND not the words you want to hear! Austin

I'm going to preface with there's still a lot of unknowns, but we are on the right track.  Just to summarize, Austin scared and stumped the doctors on Thursday when his blood sugar went VERY low after fasting for OR, unusually low.  They determined the need to look into why and as frustrated as we were, there's a reason for everything. After last nights critical labs (12 hour "safety" fast), the biggest outcome was his cortisol level (which should have been high due to stress on the body) was low.  Therefore, his body did not react to the need to protect him from the stress of the low blood sugars.  For now, I will spare you all the details because we still don't fully understand all the factors and systems involved. We will be on our way home after they complete a cortisol study to see if his adrenal gland reacts to an injection of medication (steroid) that should cause the production of cortisol.  It's a timed study.  They drew his baseline, gave him the

  Mr. Austin has once again stumped the medical teams!  We are still at Children's, fingers crossed Austin will be discharged tomorrow!  Today the events of yesterday became a little clearer and endocrinology was called.  Once in surgery yesterday, Austin's routine nutrition labs were drawn one last time before Dr. Kreykes removed the central line.  The results came back as he was leaving the OR and results were a blood sugar of 22mg/dL.  They did a stat retest and it was 11mg/dL and glucose was given immediately.  Thankfully, he stabilized very quickly.  He was pretty sleepy waking up from the anesthesia and this was also concerning, however, Austin typically does take a little longer than a typical kid his age, but he was being watched so closely.  We finally got to see Austin and although he was sleepy, he knew who we were and he talked to us a little bit!  It was slow, but he improved throughout the evening and by the time we got to his impatient room, he was sitting up and

I will preface with he is okay and he will be okay!  As most of you saw, we had a late start to surgery due to some delays in front of Austin's case.  It happens.  He didn't get into OR until around 1pm (he was scheduled for 10:45am). Dr. Kevan came out to talk to us about her findings.  His bowel inflammation looked significantly better than his previous scopes.  We will likely be able to decrease one of his medications in the near future!  And...she found a few answers.  Austin's stomach was very inflamed and irritated.   We will increase is omeprazole (Prilosec) to hopefully get that looking and feeling better.  And...he has a small ulcer at the anastomosis site (we think, hard to tell because Dr. Kreykes did such a good job hand stitching it).  Obviously, we are not looking at surgery for the ulcer as Austin doesn't have much bowel to begin with and then we would only create a new anastomosis site.  Ugh.  So, Dr. Kevan is going to come up with a plan to settle it do

I hope this finds everyone well!  So much going on, I'm just not sure where to start!  I'll start with Austin, followed by Max, new house, upcoming move and finally our Virtual Walk for Amazing plans! Austin is doing so wonderful!  This boy brings so much joy and determination.  It's surgery week and I can honestly say I'm excited for this one (of course not that he has to be put under again) and we're very hopeful the outcomes will make it worth it!  Line up the providers...Austin is having his central line removed by Dr. Kreykes.  This Broviac has been in place since September 2019.  His last infusion of TPN was November 2020 and his last fluid (normal saline) bolus was January of 2021!  It's time!  We were hesitant until about a month ago when he suddenly started gaining weight and feeling great!  Austin also had some routine labs a few weeks ago to check for the indication of inflammation.  His calprotectin was NORMAL!  This was amazing news!  I almost jumpe