Update on Matthew

First off, we are home! Matthew was discharged at about 1 pm today. He was SO happy! Okay, we all were.  :)

Our laptop has been out of commission so my only internet access these last few days was at night when I came home...and really I just wanted to sleep then. So, for my sake and just in case anyone else is wondering, here is the rest of Matthew's story.

Thursday night (in the middle of  the night when he was FINALLY sleeping) the doctors started drawing blood for different tests. Matthew was doing much better at this point. I think he was just taking the Albuterol every 4 hours, which he HATES....I can't blame him- the medicine stinks. He has to put a spacer (a big mask) on which has the Albuterol inhaler attached to it. He has to do 2 puffs every 4 hours and keep the mask on for 10 seconds each puff. Anyway, Friday we met with several doctors. They had pulmonary and GI teams coming in, in addition to his original team of doctors. I really appreciated them coming as I wanted to make sure we had explored all possible options while we were in the hospital. After talking with each set of doctors, they ordered several new tests...which meant more poking. At some point in the afternoon someone from the lab came in and drew several vials of blood. Poor kid! Every time someone came to draw blood it took 2 or 3 tries to find his vein. His poor little arms are so bruised. They also had a dietician come in to help us figure out ways to help Matthew eat more, which was really helpful. She basically recommended helping him eat higher calorie and protein foods, including half and half instead of regular milk, Pediasure, and putting butter, peanut butter, etc on anything we can. She was happy to hear that for breakfast he ate a cube of butter...yep...a big cube of butter all by itself. And he loved it. Halfway through he looked up at me and in a very happy voice said, "Wow, this tastes amazing!"

In between talking to the doctors we just waited...a lot. Matthew was back to his normal, wild and crazy self. And after being cooped up in that little room for so long, he was bouncing off the walls. So Friday was kind of a long day. He was also hating every masked and gowned person that came into the room (since he was undiagnosed, all of the hospital personnel had to gown and mask to come in). Every time someone came in the room he hid behind me "so the doctors can't see me". Any time any doctor/nurse, etc tried to talk to him he would make sure they weren't going to put any pokies in him before he would talk to them. He was terrified. All day long he asked if I was going to take him home yet. The doctors were waiting for test results and thought we might be able to go home Friday night, but in the end we had to stay. To pass the time, we watched lots of movies (his favorite was Chicka Chicka Boom Boom), played games on the tv (the fave was a matching game), and pretended to sleep. This was Matthew's idea.  :)

This morning was mostly the same. Lots of waiting, a final talk with the doctors, more waiting, a TB test (more poking) and then the discharge....thank goodness! We did get to enjoy a little visit with Jon's dad and sisters which we really appreciated! All 3 kids fell asleep on the drive home...and Jon and I wished we could have. Hopefully we can recover from this exhaustion. It's crazy how sitting in a little room, not really doing anything can wear you out so much!

So, after that whole adventure we still have no answers. We are still waiting for results to come back and we have follow up appointments scheduled with the pediatrician, pulmonary, and GI over the next 2 weeks. The discharge report gives a pretty good rundown of where we're at with everything so here is the shortened, edited version:

Matthew was placed on Albuterol every 4 hours, inhaled steroids (Qvar) and oral steroids (Prednisolone). It is unclear whether he has asthma, but he likely has what is called reactive airway disease that may respond to similar treatments. The cause of this is under investigation. It is recommended that Matthew follow up with Pulmonology, given the severity of his respiratory distress and his need for steroids.

Given the history of poor weight gain and frequent (ear) infections, there was a concern for possible systemic illness that warranted further evaluation. Immunology and allergy testing was performed, performing, and are still pending. In addition, gastroenterology saw Matthew to evaluate his poor growth and recommended several screening labs which were also pending. It was recommended that he follow up with GI as an outpatient to continue his workup. Nutrition advised supplementing his diet with Pediasure for increased calories.

So, that's the latest. Hopefully we are able to find out more in the next couple of weeks. For now, we're grateful that he is okay and hope we don't have any more repeats!