A Scary Few Days

Now that we know some answers and a little bit about the road ahead, I've made the decision to keep this blog as our main source of sharing updates with you!

As some of you may know, I took Austin into the doctor's office Tuesday morning for vomiting.  By noon we were at the Children's Minneapolis emergency room.  After hours of tests and nothing conclusive as to what was going on, he was admitted to a regular pediatric room for overnight observation and a few more tests. The one test that was alarming was his blood sugar was high (>200 at times) and for an almost 4 week old, that was concern.

The overnight was fairly quiet, but we could tell he was very uncomfortable. By morning his tummy had become firm and distended and the nurse was having trouble getting a blood pressure in his leg.  The rapid response team was called and within an hour, he was in PICU (Pediatric Intensive Care Unit), intubated, had an NG tube (goes from his nose to his stomach), a central line and an arterial line for fluids and medications.  He was critical and had gone into septic shock.

At noon the decision was made to take him to the operating room to determine exactly what was going on.  The findings were not good.  His bowel had malrotation with volvulus meaning that his bowel had twisted about 720 degrees cutting off blood supply to his small intestines (gut) and a little to his large intestines (colon).  Because after untwisting, the color changed slightly, the surgeons made the decision to keep him open to watch color. So for the following 40+ hours, we watched and prayed for the intestines to return to pink.  He remained fairly stable and quiet on Thursday.

This morning the surgeons took him back to the operating room to reassess.  They made the decision to remove 2/3 of his small intestine and a small section of his large intestine because they were not going to survive (due to the amount of time they were deprived of blood flow on Wednesday morning) and they were causing him more stress.  So, he has about 1/3 of his small intestines (about 30 cm).  He has a stoma (the large intestine brought to the surface) that will be temporary.  He will eventually have another small surgery to connect the colon back and put in a more permanent IV access.

As for eating, he will go home on IV nutrition (called TPN -Total Parenteral Nutrition) for essentials such has vitamins and minerals.  He will not have the length of small intestines to fully absorb these through just food.  He will also be reintroduced to breast milk once he's more stable and off the ventilator.

A few questions we're commonly getting:
1.  Does this have anything to do with him having Down Syndrome?  The answer is no.  The fact that he has malrotation in his bowel is congenital, but when it decides to twist is totally a fluke.  People live their whole lives and don't know they have malrotation.

2.  Is transplant an option?  Short answer is no.  The bowel is an organ that has really high rejection rates.  Austin will be a new patient of Minnesota Gastroenterology in the upcoming weeks and they will educate us more on life with "short gut".

3.  How are we doing?  We're doing ok. This has all happened so fast and it's been very hard to process.  We are blessed to be at Children's where the support, surgeons, nurses and staff are amazing!  We've been able to get a little rest and showers at our room in the Ronald McDonald House.  They also feed us pretty well there!

4.  How long will Austin be in the hospital?  About a month.  It will be one step at a time.  First steps are that he will continue to be on the ventilator for a few days giving him time to recover from the shock that his body endured on Wednesday morning.  He's also on meds to keep his blood pressure exactly where they want it. As he continues to recover, those will get tapered.

A very special thank you to everyone for all their prayers, love, text messages, phone calls, and overall offering to help in anyway.  Especially our parents who have cared for and shared their love for Max during this difficult time.  We feel all of your prayers and encouragement!

I will also do my best to update all changes and milestones for Austin!  Please keep our sweet little boy in your prayers!

Love,
Tara and Brian
Max and Austin