So we had a successful transition to the g-tube last week. The removal of the G/J-tube was pretty easy and the new mic-key button went in quickly. We were able to have it done right in clinic, no need for radiology like we needed to replace the G/J. The one shocker is that if the mic-key button breaks or falls out, more like is pulled out, I will be the one to replace it. Not sure how comfortable I am with that, but when or if that time comes I will have to deal with it. It's actually quite a small device. Maybe only a couple inches if that. It has a balloon as the other devices have that just gets filled with water once inserted and it stays in place. With the button we are able to disconnect the feeding tube so that all that he has throughout the day is this small 1/2 inch diameter button that sticks out about 1/4 off the skin. It is much easier to take care of compared to what we've had up until now.
The weekend went pretty smooth aside from a worsening cough. I started doubting my decision to change his tube because he was vomiting a lot of his milk.. At times it was like the occasional spit up. I did have the nurse come on Monday to get him checked because the vomiting is when we worry about aspirating.
The nurse actually said he sounded pretty good in his lungs. She instructed us to do his Albuterol treatments every four hours to help open his lungs. The hope was to break up whatever was there and reduce his cough. The great news was that even after his issues he managed to gain weight, bumping him to double digits, 10lbs 1oz, 21 inches. What a relief to see the scale go up.
Unfortunately, we continued to have issues with that cough. He wasn't keeping much milk down at this point. By Wednesday we were calling the nurse. We were going through towels and many changes of soiled clothes. We ended up getting him into his pediatrician to take a look at him. The nurse worried it could be pneumonia again. I can't help but laugh a little at every new event that happens because it feels like we'll never move away from these worries and problems.
Well, the pediatrician had a better reaction to Baby GL's symptoms. He tested his oxygen saturations to see if he was getting enough. The recommendation was to bump him up to .5 liter from his .25 liter just to get him past this. We were to continue with 4 hour Albuterol treatments, and he put him on a cycle of both Amoxicillin and Prednisone. The Prednisone worried me only because I know how it affected me and couldn't image how it would affect a small infant.
We got our answer that night when Baby GL awoke at 12 midnight and never went back to sleep. We rocked, we soothed but nothing calmed him. He had a fever, about 101, so we were trying to bring that down. His hands were like fire. We ended up, by about 6am, giving him a bath. It seemed to help, and he did sleep, but only a couple hours, maybe. By late morning his fever spiked 102 so I called the nurse and the pediatrician. The Pediatrician's recommendation was to ride it out. Between the two meds they would resolve whatever was happening, but sometimes they take 24 hours to kick in. The nurse came to check on him and was still worried as she was the day prior. However, we were told to wait. I did ask about giving Baby GL Pedialyte. When I fed him he took a bottle like he had never been fed before. Those signs showed me he was maybe dehydrated.
As the day progressed he did take a couple ounces of Pedialyte and his fever came down. His cold hands returned, what a relief to feel those clammy, cold, saliva-soaked hands. Even through the fever Baby GL was such a trooper. He was smiling and cooing as he had before. I noticed a lot of relief when he finally got a good long nap.
By Yesterday Baby GL was pretty much back to normal. No more fever, no more vomiting, just happy smiley baby. PT even came on and he showed off as he does like he never had been sick. We tried him in his bouncy saucer this time. He's still small for it but with a pillow under his feet and a blanket behind for a small support he did great. Baby GL actually liked it. We didn't want to prop him too much because our goal is to strengthen his core and neck muscles. He's being doing much better at supporting his head. So this is our new toy. Between the bumbo and bouncer he'll be busy. I think his favorite is just lying on his back on his play mat. He can't get enough of his lion.
I think one of my favorite moments happened this morning. Baby GL welcomed us with his gurgly "Good Morning" talk. He wakes with conversation, which is much more pleasant than cries and screams. I spent 30 minutes this morning listening to his stories. He is so articulate that you can almost imagine the words he's trying to make. There's a quiet, interested voice during conversation, then the occasional excited squeal, followed by more soothing coos. Even his tongue and mouth action changes as if there are words developing there. Maybe other parents don't think those coos and gurgles are as meaningful. Baby GL continues to exceed our expectations of how quickly he'll progress that every moment is so meaningful and memorable. One thing I forgot to add was that when the nurse came back on Wednesday she weighed him again, 10lbs 4oz.
The weekend went pretty smooth aside from a worsening cough. I started doubting my decision to change his tube because he was vomiting a lot of his milk.. At times it was like the occasional spit up. I did have the nurse come on Monday to get him checked because the vomiting is when we worry about aspirating.
The nurse actually said he sounded pretty good in his lungs. She instructed us to do his Albuterol treatments every four hours to help open his lungs. The hope was to break up whatever was there and reduce his cough. The great news was that even after his issues he managed to gain weight, bumping him to double digits, 10lbs 1oz, 21 inches. What a relief to see the scale go up.
Unfortunately, we continued to have issues with that cough. He wasn't keeping much milk down at this point. By Wednesday we were calling the nurse. We were going through towels and many changes of soiled clothes. We ended up getting him into his pediatrician to take a look at him. The nurse worried it could be pneumonia again. I can't help but laugh a little at every new event that happens because it feels like we'll never move away from these worries and problems.
Well, the pediatrician had a better reaction to Baby GL's symptoms. He tested his oxygen saturations to see if he was getting enough. The recommendation was to bump him up to .5 liter from his .25 liter just to get him past this. We were to continue with 4 hour Albuterol treatments, and he put him on a cycle of both Amoxicillin and Prednisone. The Prednisone worried me only because I know how it affected me and couldn't image how it would affect a small infant.
We got our answer that night when Baby GL awoke at 12 midnight and never went back to sleep. We rocked, we soothed but nothing calmed him. He had a fever, about 101, so we were trying to bring that down. His hands were like fire. We ended up, by about 6am, giving him a bath. It seemed to help, and he did sleep, but only a couple hours, maybe. By late morning his fever spiked 102 so I called the nurse and the pediatrician. The Pediatrician's recommendation was to ride it out. Between the two meds they would resolve whatever was happening, but sometimes they take 24 hours to kick in. The nurse came to check on him and was still worried as she was the day prior. However, we were told to wait. I did ask about giving Baby GL Pedialyte. When I fed him he took a bottle like he had never been fed before. Those signs showed me he was maybe dehydrated.
As the day progressed he did take a couple ounces of Pedialyte and his fever came down. His cold hands returned, what a relief to feel those clammy, cold, saliva-soaked hands. Even through the fever Baby GL was such a trooper. He was smiling and cooing as he had before. I noticed a lot of relief when he finally got a good long nap.
By Yesterday Baby GL was pretty much back to normal. No more fever, no more vomiting, just happy smiley baby. PT even came on and he showed off as he does like he never had been sick. We tried him in his bouncy saucer this time. He's still small for it but with a pillow under his feet and a blanket behind for a small support he did great. Baby GL actually liked it. We didn't want to prop him too much because our goal is to strengthen his core and neck muscles. He's being doing much better at supporting his head. So this is our new toy. Between the bumbo and bouncer he'll be busy. I think his favorite is just lying on his back on his play mat. He can't get enough of his lion.
I think one of my favorite moments happened this morning. Baby GL welcomed us with his gurgly "Good Morning" talk. He wakes with conversation, which is much more pleasant than cries and screams. I spent 30 minutes this morning listening to his stories. He is so articulate that you can almost imagine the words he's trying to make. There's a quiet, interested voice during conversation, then the occasional excited squeal, followed by more soothing coos. Even his tongue and mouth action changes as if there are words developing there. Maybe other parents don't think those coos and gurgles are as meaningful. Baby GL continues to exceed our expectations of how quickly he'll progress that every moment is so meaningful and memorable. One thing I forgot to add was that when the nurse came back on Wednesday she weighed him again, 10lbs 4oz.
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