On our own...again.

We left the GI follow-up visit so discouraged.  I began digging for someone to help us and connected with a doctor out of state who seemed to know about PHA.  I learned our insurance would not pay for the out of state care, so that was not an option for us.  At this time, our GI doctor had released us telling us again Chase just had allergies.  The genetic tests had not come back yet.  We did not have a nephrologist and our PCP was less than helpful.  We did however have a hematologist who was involved in Chase's care because of his bloodwork abnormalities.  We went to see her and took the pictures of Chase's ulcers along with our worries.  She was adamant that we get a second opinion for his GI issues and even helped us get referred in a collaborative care program at the hospital. A second opinion meant traveling to another children's hospital in our state.  We tried to get the appointments set up through the standard referral service, but the closest appointment we could get was 6 weeks out. The next day, Chase began to scream in pain every time his bowels moved and the blood was increasing.  I took him to his PCP and again they were no help.  I just continued to pray that God would help me make the right decisions as his mother.  At wits end, I called the PCP's office back and asked them to try to get us an appointment sooner that the 6 weeks they initially told us.  They were unable to and told me just to take him to the ER.  So, at 4 am the following day we packed our bags and made the 3 hour trip.  It was one of the best decisions we have ever made.  Even though we felt like we were on our own about all of this, God was there.  He had a perfect plan, we just had to have faith.

We were admitted and for the next 5 days Chase had a great team of doctors digging into his medical history and his current condition.  Having read a case study of an infant with PHA dying of and unexplained bowel perforation, we were mainly there for them to rule out it was about to happen with Chase.  They were not sure why he had the ulcers, but they were able to help us rule out that Chase suffered from food allergies. The nephrologist there also made a theoretical connection between the amount of salt he was wasting to his bowels and the ulcers lining his colon. They were interestingly intrigued at the rarity of PHA and seemed to want to learn something from Chase, which is just what we had been looking for someone to do.  God is so good!!!  We were released having ruled out several GI disorders and allergies.  They put Chase on an adult dose of probiotics which have seemed to help tremendously.