We finally arrived home to Pullman after being gone for 25 days or so on Christmas Eve as a family. And let me say I never want to leave the house again.
Well where to begin. I will try and make this post about Trey's intensive feeding program as brief as I can. I thought I didn't have an expectation as we started the program. I knew Trey wasn't going to miraculously overcome all his feeding issues in 2 weeks but I guess I secretly hoped that he would have a light bulb go off in his head and make huge strides during this process. But that wasn't the case. We did for SURE make some progress throughout the experience. Trey no longer receives a continuous drip through the night. Which will be a huge plus for Mommy when baby brother arrives. I don't remember the last time I was able to sleep longer than 3 hours straight at night. We have almost cut the formula he originally received through his tube before we started the program by almost half. So if you look at the big picture at Trey's first big attempt at weaning from his tube it is quite a bit.
Looking back at the whole program it was a complete roller coaster ride if I had to describe the experience. We were both exhausted to say the least. The first couple days were very difficult and a lot of tears were shed by both of us. Trey's little body had a very hard time handling the dramatic tube feeding wean schedule they have designed for the program. Trey once again showed us that he isn't driven by hunger. Meaning just because he is starving he won't just eat anything or take on being comfortable with new foods right away. His blood sugar during the beginning of the program seemed to be dropping too low and it seemed like he couldn't even function. So the team decided to add an ounce of formula back to each of his water boluses throughout the day just to take the edge off a little. Which seemed to help.
I assumed as the calories he was receiving decreased he would eat and drink more. He did definitely pick up his appetite more with foods he was comfortable with but a much slower pace in other food he struggles with. Majority of the program Trey really had to work on desensitizing his mouth. Meaning when Trey does put food in his mouth that he won't usually swallow, learning how to chew that food, not gag and spit it out on his own if he needs to. And at the same time learning to work through those panic feelings he gets. I think until he finally masters this the swallowing will eventually come.
Trey has always had a hard time with soft constancy foods. He never took baby food as a little one. You would think it be the opposite. He does much better with dry crunchy foods. He for example eventually swallowed a banana for the first time. We worked with a variety of different foods but tried to stay consistent with a few foods so it wasn't too much change. His therapist at Children's wonders if he has some unawareness in his mouth. Meaning he can now chew up things like noodles or apples to the point where you would swallow and it's like he doesn't know what to do after that and spits it out or pockets the food. He will also do this with the food he has mastered at times. So they talked about different techniques we can practice with Trey to work on getting him to swallow.
Of course as with life we had a major setback. Just as things were starting to pick for Trey at the end of the first week he got sick. I just don't think he had much reserve. He battled a fever and respiratory cold for almost 5 days. So we ended up missing 3 days of therapy going into the second week. They don't do therapy on the weekend so out of the 10 days at Children's we only were able to attend 7 days. I felt like this illness really threw everything off. Because obviously when you are sick you already don't have much of an appetite as it is. It was a major let down and of course I think if that didn't happen how much further Trey could of improved.
We did end up getting a spot at the Ronald McDonald house a couple days into the program but after the first few days I had no idea how exhausting therapy would be for Trey and I. I thought with all the changes Trey was experiencing coming home to a familiar place (my parents) would be comforting. And for me being 6 1/2 months pregnant at the time not having to worry about cooking, doing laundry and having time to just use the bathroom by myself at night was enough to handle the commuting everyday to Seattle. My parents graciously took turns driving us each day to Children's. I seriously don't know what I would have done without them. They were amazing.
Trey didn't seem to mind the drive watching his favorite DVD's everyday.
By the end of therapy he was one tired little boy.
Overall I am glad we went through this experience. The days we missed while Trey was sick we are looking to come back for follow up visits this spring. We are continuing on this current schedule with his tube feeds but we have needed to add back more formula to maintain weight gain. Our GI doctor and dietitian at Mary Bridge are now taking over our care and I feel like we have a good plan set up. We are going to let Trey get settled back into a routine in Pullman and keep trying small weans as time progresses. Pushing him with bigger tube feeding weans when it seems appropriate. He will still get continued weekly feeding therapy in Pullman which we are anxious to restart. He will go in for weekly weight checks here in Pullman which we will report back to the Mary Bridge team.
Trey did have some blood drawn after the program by his neurologist and GI doctor. His seizure medication had to be increased because the level wasn't showing to be at a therapeutic level but we are happy to report no seizure activity. His GI doctor did another allergy panel to see where some of his allergies are. We happy to find that we can start incorporating egg into his diet but only through small cooking ingredients at this time. Still no dairy or peanuts and a new allergy we found was beef. Interesting....
Obviously life never goes as you plan it but I am choosing to look at how far Trey has come. We have an overall healthy and very happy 3 year old boy who loves life. We have come so far from Trey throwing up several times a day to being able to maintain his weight with only half of his normal tube feedings. We will take slow and gradual progress over none. We are so proud of this little guy. It has been a VERY long 3 weeks.
Here are some more pics from Trey's therapy time at Children's.
Walking into Children's everyday.
Trey loved guessing what elevator we were going to take everyday. He couldn't get enough of the beluga whale elevator.
Trey would get weighed every other day during the program.
There were silly times during therapy too. Wrong hole buddy.
Trey had free time at the beginning of each session. He loved this blue ball.
Trey with his therapist at Children's.
More blog posts to come.....
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