The Longest Day...Ever

Our day began at 7 am when Jacoby and I embarked on yet another long trek down to Denver for a second round of hormone testing at the endocrinologist's office. This time they were checking to see if his pituitary gland produces enough cortisol since it does not produce enough growth hormone. In most cases, kids with low growth hormone do produce enough cortisol but of course they have to check to make sure. So, Jacoby endured placement of another IV and then watched videos and read books during the 1.5 hours of testing. We were lucky to have Miss Donna again as our nurse, and I think she and Jacoby have become good friends. We'll be seeing more of her during our follow-up appointments throughout the year.

After the hormone testing was finished, they bandaged up the IV (to be used again later) and Jacoby and I headed over to Presbyterian/St. Luke's hospital for an MRI. This was to rule out any anatomical abnormalities with his pituitary gland. It was hotter than blazes in Denver today and the traffic was horrendous. As we trekked along I was getting slightly annoyed that the air conditioner in the car seemed to be acting kind of weird but was more focused on getting to the hospital on time. When I parked the car, steam began billowing out from under the hood and antifreeze was pouring out from underneath the car. Uh-oh. I know only enough about cars to know that this probably wasn't a good sign. I told Jacoby that the Subaru was broken and it was a good thing Daddy was coming with the Honda or we'd be stuck.

By this time, the poor kid was definitely feeling the effects of fasting since 7:30 pm the night before. I think it's safe to say that I wasn't given entirely accurate information on how this day would play out because we had to be admitted as hospital patients which took over two hours before Jacoby was finally taken to the radiology department. He ended up fasting for 21 hours which was far too long for this little guy. There were a few moments when he was beside himself, but luckily we had a very kind anesthesiologist who still managed to get a few smiles. When it was finally his turn, I was a weepy mess with having to leave my little boy behind but he went under with the anesthesia really fast and easy (they sedate most kids under 5 for MRIs). Justin and I took the opportunity to grab some food and arrange for a tow truck to come and rescue our poor Subaru. Jacoby's MRI took over an hour. By the time I got to go back to recovery, we got to watch the Subaru being loaded onto the tow truck from our window. Jacoby sucked down an entire juice box in under 2 minutes flat. He has proceeded to eat non-stop for the last 3 hours. We had to race from south Denver all the way to north Boulder to pick up Morgan, who was one of the last kiddos to be picked up. We finally got home at 6 pm. The kids are headed to bed and I'm about to start hunting around to see if I can find a bottle of wine anywhere in this house. (: Just kidding...sort of.

Jacoby was such a good little trooper today. We were really proud of him and hope that this is the last of the really awful testing for awhile. I also have to say that we are so blessed with the medical community we have here. We have had nothing but a great experience so far and just feel so fortunate to live this close to good care.

A few other highlights from the week are that our insurance approved Jacoby's growth hormone--we just haven't heard how high our co-payment is going to be yet. We also had a great visit to the GI Department at Children's Hospital. The outcome of the appointment was that Jacoby should start a course of acid reducers to treat for reflux. We appreciate the conservative approach they are going to take instead of jumping right down his throat for biopsies. We'll probably have to do an endoscopy at some point, but they want to try a few things before we decide on the invasive procedure. The PA we met with isn't convinced that Jacoby has EE or any of the other allergic inflammatory disorders at this point, but was concerned about the throat pain he complains of. We also met with the dietitian, who actually seemed impressed by Jacoby's diet despite his many food allergies. She had concerns about his calcium intake and wanted Jacoby to start using a special (expensive) formula as a nutritional supplement since he basically has no dairy in his diet. We also had to keep a very detailed food diary for 3 days that we'll send in to her for a more detailed nutrition analysis (that will analyze nutrients and micro nutrients). I have to say that Children's Hospital was quite impressive. It's kind of an inspiring experience to walk on the campus knowing that it's a place of hope and magic and tragedy and loss.

That's the latest in our journey. We'll find out more in 10-14 days when the results come back. We should also be receiving our first shipment of growth hormone in the next few weeks (really hoping the co-pay is reasonable) and then we'll be headed to Denver again for training on how to administer it. Thanks for all of your thoughts and prayers this week!