What a week this has been. Yesterday Micah had a great day at least from about 11am to 9pm. He had his IV moved to his foot on Friday night so that made it easier to cuddle him closely. He was smiling and talking again. It was a very enjoyable day with him.When night time came things took a bit of a turn and we learned a little more. Over the last 36 hours we are seeing patterns in Micah's behaviors in regards to his eating. He was started on a new formula, it's a formula that is the most gentle and easy to digest that they have. If he were to have allergies to foods, and be intolerant to all other formulas this is the end of the road choice. They chose to put him on it to see what happens. If things improve then that avoids some testing possibly. We had nothing to lose by trying it and why wait if we don't have to. Once he began it on Friday night we did see a reduction in fussing and painful behaviors. He's also being fed a few different ways at the moment. He is getting IV nutrients, he is getting formula through the nose tube 24 hours a day at a slow rate and then we feed him by bottle at our discretion. We are doing the 24 hour a day slow feed to help him digest better, hopefully, and to prevent refluxing, hopefully. His pattern of behavior implied that when he was fed by nose tube only, he was refluxing and then there was nothing to wash it down so he had acid burning his esophagus. This is why we do the tube and bottle at the same time.
What's been happening is that approximately every 12-14 hours, Saturday morning and night, since the new formula he has been vomiting an amount that appears to be all he had previously been pumped into him. These events are quite traumatic and gross. The food is not appearing to even be digested. Sunday morning we were waiting for the next episode, watching the pattern and being careful how much we fed him by bottle. He has only had large spit up so far today. We talked with the GI doctor and we have now changed his feeding to be 10 hours on and 2 hours off to give his stomach and intestines time to process. It definitely appears his stomach/intestines are not emptying and processing correctly.
As far as the IV issues his IV's have gone bad after 24 hours the last 2 days. Saturday night his IV was checked and it was fine, then 30 minutes later it went bad. We all caught on quickly and thankfully there was no muscle damage. His veins are becoming more difficult to find and then once they are found the IV is not working once there. He could very well be on his way to a more secure, more permanent type of IV.
We are all waiting for the MRI results as well. We should get those on Monday. Since it's the weekend nothing would happen with them anyway so we are not worried about it. We are bracing ourselves for the information overload on Monday once all the doctors get there hands on the results.
OH, one more piece to the puzzle. While we have been at the hospital he has cut another tooth, this one is on the top. So let's throw teething into the mix and really be mixed up. Poor little guy has so many things going on.
-For the Upper GI on Monday. That they accurately see what they need to.
Also pray they tack on a "Follow through study" since he's eating the gunk for them anyway. With this they X-ray his stomach every couple of hours after the test to see where the gunk is going and what it's doing.
-For a surgery date that is soon enough for us to just stay in the hospital. At this point they can not send him home because he can't handle even 1/2 of the minimum they want for him.
-For his veins to strengthen and the IV to remain working.
-For comfort and soothing for Micah. He is getting restless and has been clawing at the nose tube taped to his face. He also has a really hard time falling asleep because he can not be swaddled as tight as necessary for good sleep for him.
-For endurance for our family. This has been a long week with another one ahead of us. We all miss being able to be together.
-For construction to go smoothly this week as well as returning our home to a more normal state. The girls asked me this afternoon if we were moving. Sure does feel like it between shifts at the hospital, the house torn apart and bringing thing to and from the hospital.
-For the girls to have an awesome week inspite of the craziness.
We will keep you all updated.
Thank you for your prayers and support!