Baby Michael apparently missed the nursing staff at Rainbow’s as we had to go back and visit them for a week! For about a month and a half, Michael has been having trouble with his feeds. He’s been arching his back, crying after a couple of swallows, and is just absolutely miserable for a long period of time following his feeds. Courtney and I thought there was a high possibility that Michael was aspirating his formula, and that he had really bad refulx.
On Sunday, August 12, we were off to the ER. These are always fun trips as there is only one ER that we can go to with Michael, and it’s an hour and a half away. Normally, for something not life threatening we would wait for an appointment, but aspirations can cause pnuemonia and other complications that we just don’t need. Waiting for an appointment to open up would just be too long to wait, Michael was being absolutely miserable.
As we got to the ER, we were met with our normal VIP treatment. Baby Michael is quite the unique case, and thus, he pretty much gets front of the line privileges. We were taken into our triage room where Michael would wait to be seen. Michael has this magic way of being absolutely perfect when a Dr comes to look at him. It really is quite amazing how something that has happened for multiple weeks without fail, would completely disappear just at the exact moment there is a medical professional looking at him. So the doctor comes in and looks at our “sick baby.” Luckily we had armed ourselves with videos of what he had been doing during his feeds. After showing the doctor the videos he def realized that we weren’t fabricating facts.
By all accounts the ER trip was rather pointless. We already had an appointment with GI the next morning, and had we been admitted, it would have taken longer to see the GI doctor. The good thing though, was that it showed the GI doctor that this was actually rather significant and not just your run of the mill reflux.
The next morning (Monday, August 13) we got to the doctors office and without much of a conversation, the GI doctor said she was going to admit Baby Michael for tests on his upper GI tract. Off to Rainbow’s Floor 6 yet again we went. First, we were taken to a shared room. Well, Michael has a very………. fragile immune system, so a shared room is certainly not ok. After making our presence felt with immediate demands for a new room, we met the doctors and discussed the different tests that Michael would be receiving.
Below is listed the test, their date given, and a bit of the information that came from each test;
Upper GI Test (Monday, August 13): This is a test where they watch Michael swallow barium on an xray machine. This test showed that Michael was having “wide jaw excursion” meaning that he opens his mouth too much when he’s eating.
pH Impedance Test (Tuesday, August 14): Michael would have a cathetor placed into his esophogus which would read the amount of refulx he had, the strength of that reflux, and how often he had reflux. This test came back with extremely abnormal readings. This certainly made the doctors begin to wonder the best course of action to take care of this problem soonest. Imagine a mixture of battery acid and vinnegar sitting in the back of your throat 80% of the time. That’s exactly what the results showed Michael was going through.
Modified Barium Swallow (Wed, August 15): This is similiar to the Upper GI Test, but with an occupational and speach therapist watching. This test would determine whether Michael was aspirating his food. Results came back that Baby Michael was not aspirating his formula during a normal feed, however, during a feed with rice cereal added, he was aspirating it. This likely means that during feeds where Michael is tired or fatigued, he is aspirating his feeds.
Endoscopy (Fri, August 17): This is where they would stick a camera down Michael’s esophogus, into his stomach, and into his upper intestines. This test would show that the reflux has not yet done damage to his digestive tract. However, the irritation in the stomach would suggest, that we were in the early stages of possible ulcers or thrush.
After the endoscopy, the nurses would place a NG tube (Feeding tube through the nose). This is to ensure that our little man is getting all of the nutrition he needs. It’s kind of hard, because we know the reason he doesn’t eat is cause it hurts, so we are really putting him through pain by forcing the feeds, but obviously eating is necessary so we can get over it.
Finally, on Saturday morning we were discharged and ready to go home. Michael was absolutely horrible through the entire stay (understandably so). Poor Courtney stayed with the little guy through it all (with the exeption of Daddy’s night Thursday).
Now you are likely thinking to yourself, “Of course she did, who wouldn’t stay with their kid the entire time.” MUCH EASIER SAID AND THOUGHT THAN DONE. Imagine being stuck in a tiny room with a child constantly screaming. This is your child and you know he is screaming in pain and there is nothing that you can do to ease that pain. Now add to that, every single time you finally get that child to sleep, a doctor or nurse comes in cause she needs to test or check something. Which in turn wakes up the baby, who than begins where he left off with constant screaming. You are doing this on about an hr of sleep because well, he hasn’t slept the entire time he’s been there.
I did one night of this (Usually I am the one that goes home to take care of the dogs and the house.) cause Courtney was understandably losing her mind. Let me tell you, this was an experience that no parent should ever have to endure, let alone, regularly for a week at a time. I was able to keep from going nuts, but truly only because it was one night. There is likely no way that I could do this for the amount of time that Courtney does this. To give you an idea of how my night went:
The Browns were having their preseason match-up with Green Bay. AWESOME, I can feed Michael about 45 minutes before the game, burp him, and have him fall asleep just in time for kick-off. Three hours between feeds, football game is about 3 hours. This is going to be perfect. Pfffft, I got this.
Went to feed Michael is bottle, and he of course screamed in pain and pulled from the bottle the entire time. Ok, now we are running a bit behind but I still have 20 minutes or so to get him to sleep. He’s being pretty calm now that the bottle is over……. Wait, wait, his eyes are rolling back and he is starting to show the signs of a nap…. YES! This is working…… Game time is approching (7:50 and games @ 8), baby is falling asleep, this is happening!
Michael’s eyes open wide, face crunches up, and the shrieking begins. Absolutely full go, as loud as he can, body tensed just to make sure he gets every bit of his body behind it, screaming. Like I said, this begins at 7:50. By the time 2am rolled around, Michael decided he would take a couple of minutes to be quiet and take a nap. 2:15 rolls around and now its time for vitals…. Michael starts his screaming again. Finally however around 3am, he or maybe just I, fell asleep for a couple of hours. I made it clear that if any nurse or doctor came into the room and disturbed him they would be exiting the room through the window and not the door.
Well thats pretty much a night in the hospital. During the day you get constant screaming, mixed with doctors and nurses coming in to tell you about a million different things about your kid. You are than required to understand, remember, and make decisions based on all of this information. Have fun!