Last week was overall AWESOME in feeding school!!! Monday, Evan was still sick. He sounded awful even with us doing breathing treatments all weekend. The nurse at the feeding clinic listened to him and said it's time to take him to the pulmonologist to get looked at. He sounded really wheezing and she heard popping of air sacks when he was breathing in. The bright side was he was still eating!!! This is a huge milestone because historically, Evan would stop eating when he was sick, he's never continued to eat when he was sick:) This is good to know because the docs won't take his feeding tube out until he's had an illness and proves he won't shut down. It was also a big day because I got to go into the room with him for his last meal. He looked very confused that I was there but it didn't seem to bother him.
Tuesday was even better.....I got to FEED Evan!!!!! We did so good together:) They added a new food to his list, chicken and mashed potatoes. He did some gagging on it so they faded it (this is when they add apple sauce to the food to make it easier for him to swallow. It's all pureed but some of the puree's are stickier than others, the starchy foods. When you add apple sauce it makes it slipperier making it easier for Evan.) They are thinking they will need to fade most of his entrees. The last feeding of the day was not so great:( Scott left the room completely so it was just me and Evan. He cried the ENTIRE meal and I was unable to distract him back. Scott and I both thought it was because he left the room and Evan was just getting used to the new feeding arrangement. So the decision was made to hold off feeding at home tonight and do three good feedings tomorrow. They don't want to set me up for failure at home:)
On a side note, Evan was seen by pulmonology on Tuesday. They are pretty sure Evan is moving out of chronic lung disease into asthma:( Chronic lung disease is something that goes away with time. At almost 4 years old, it should basically be gone. His lungs sounded like crap so they are pretty sure seeing that Ryan had asthma as a child, Evan now does. So they switched him to a daily inhaler. The bright side, no more 20 minute nebulizer treatment every night:)
Wednesday was a GREAT day!!! He took all 3 meals at the feeidng clinic from me:) I just perfected the squeeze bottle making sure I got big enough drinks for him. We had another graduation at the feeding clinic, another former 23 weeker who is now 5 years old. The kids had a great last day together, we all spent time with each other saying good bye to John. Here are all the kids together, the first of the group is gone!
There also was a fire drill that day. Evan was fast asleep and didn't have a chance to put his pants back on:) The kids loved watching the fire men check out the building! I was nervous Evan wouldn't eat good the next feeding because he only got a 45 minute nap, but he did great!
Evan and Carson practicing chewing! Carson is a twin and was born at 28 weeks. His twin brother does not have feeding issues. Carson graduates on Friday!
Here's Evan in his nap room. He wakes up slowly by watching cartoons on his iPad.
Evan loves crawling around and chasing Luke! Luke came into the program because he wasn't gaining weight and would only take a bottle. He's 2 1/2 years old. He does not have a feeding tube (not every kiddo does).
Wednesday was also a big day because I fed Evan at home for the first time!!! It was kind of a comedy of errors but he did great! Ryan had a fantasy football draft party at our house that night. The rules were for us to have just me and Evan in a room with no distractions (Gia and Diesel couldn't be in the same room with us). So I kicked the guys out of the house onto the deck and Gia was sleeping in the swing in the sun room. We could still hear the guys talking at half way through the meal Gia woke up screaming. Evan looked towards the sun room, pointed and said GG.....but he kept eating!!! He even finished with 2 minutes to spare on his timer:) He's such a rock star!!!
We went from a great day on Wednesday, to an awful day on Thursday! The first feeding was good but the last 2 were awful. The second feeding he cried the entire time but I was able to get him to eat and drink everything (not sure how that happened). The last feeding of the day was the longest 17 minutes of my life! There were tons of tears, coughing, and he even tried to bat away my hand. I was taught how to block him (basically hold his arms down with my one arm). The only thing I can think of is he is having digestion issues from switching from tube feeding sometimes to feeding him by mouth with thickners. He never has tolerated switching foods well and I think he's a little constipated. Scott gave me the best compliment however after the last meal. He said it was the best meal he's seen me do yet!!! He said most parents start pleading with the child and slip into old habits. I stayed firm and ignored the crying and hitting. The whole way home I prayed and cried that his feeding at home that night would be good....and it was:) He ate great at home!!! Again, he was finished with 2 minutes to spare!
Friday I had to work so Ryan took Evan. They started Ryan's training right away and got him in the room with Evan. He didn't feed him yet but Evan liked having him in the room. I fed him his last meal of the day when I got home from work and it went great!
This weekend was the first weekend where we could feed him at home! They usually don't start you right out of the gate feeding all 5 meals by mouth but seeing we think he's gut isn't tolerating all the switching back and forth, we fed all 5 meals by mouth. And he did great! Sunday we had Gia baptized and had dinner at my parent's following the baptism. It was loud with the amount of people there but Evan again ate great! I don't think theres anything stopping him now!
I'm looking forward to seeing how the next week goes. Again, they told us he would have an early discharge and we actually got a date of September 9 for his graduation from feeding school:) 2 weeks early!!! Thanks for your continued prayers and support...our miracle man is once again beating the odds!
Lindsey
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