(I wrote this late last night and am just now getting to posting this.)
I woke this morning feeling a bit panicky. You see, Lucy slept through the night last night, for the first time in…well, I can’t even remember when. Drew and I were getting the kids ready for school when I told him I was worried since I did not hear from or see our little night owl since she went to bed at 10:30pm the night before. Yes, we are having some issues with getting her to fall asleep once we put her down(this topic could be a post all it’s own). Drew joked with me and told me I should be feeling rested and relieved. After all, this was the night I have been dreaming of (pun intended) for a long time, or maybe not?
After sending Drew and the kids off for the morning, I quickly checked some e-mail, threw a load of laundry in the washer, and took a shower. Lucy was still asleep when I got out of the shower, normally the shower wakes her up. I kept listening for her on the monitor, but heard nothing. My heart was telling me something was not right. I went in her room to wake her for therapy at 9:40 am and I instantly knew she was in trouble, I could smell it! Sometime during the night her feeding tube came disconnected and I found our girly covered in green bile and formula, this hasn’t happened to us since getting the Mic Key system. After a frantic search for her glucometer and the phone, I stripped off all of her clothes and put her in the bathtub. She was obviously floppy and bluish in color, not good signs. I checked her glucose and found it to be 22, yikes! I called Drew to tell him what had happened and that I needed to call her doctor, only which one? You see, we are in the midst of establishing a new mito doc for Lucy. On Monday, we had a very productive appointment with Dr. R at DuPont and he agreed to be her main DuPont doc and was very willing to work with our existing pediatrician. I called our existing pediatrician to give her a heads up since she has dealt with us on these types of issues. She felt it was best to take Lucy to the ER, but to give Dr. R call and let him know what had happened. If only I knew Dr. R’s number without having to search for his card in the abyss of all of Lucy’s medical records.
In the meantime Lucy’s PT arrived minutes after all of this began. I was frantic to get Lucy bathed, fed, and dressed, and Ruth was more than willing to assist me in whatever I needed. I finally called Dr. R’s office and they had him paged. I checked Lucy’s glucose again shortly after nursing her, bolusing her a feed, and hooking her back up to her feeds. Her glucose level was much higher 63, but still below normal. Dr. R and I discussed Lucy’s status, color, tone, etc… and current glucose level. He wanted me to wait and see how she was tolerating her feeds and after an hour call him back with an update. I expressed to him that this was not our normal protocol, normally we bring her in for some IV D10. In all honesty I was happy that he wasn’t pushing me to bring her in, but I was a little worried that he doesn’t quite know our girly as well as we do.
As if it wasn’t crazy enough this morning, Ruth had scheduled for an orthotist to come during her session time with Lucy to fit her for a hip bracing system that she thinks could help Lucy strengthen her weak hips. Ruth tried calling the orthotist to let him know what was going on but was unable to get a hold of him. He showed up at the very end of our PT session when Ruth was leaving. Lucy was still pretty floppy and just laid on the floor while they attempted to brace her and get her to stand. Yeah, that was not going to happen today! At this point I realized that I had to leave to pick Sophie up from preschool as it was 11:30 and she was done! We wrapped up our not very successful PT session and left to get Sophie. At this time I was surprise to see that Lucy was perking up a little, but still floppy. I checked her glucose one more time and she was now at 73, one number shy of being at the low end of normal.
I picked Sophie up from school just a little late, and proceeded on with our day. As long as Lucy was on her pump I thought we should go on with our normal Thursday activities. Sometimes it’s easier if we are out and about when Lucy is on her pump, she likes to sit in her wheelchair and experience the world around her. She is content to just sit, and that makes feeding her just a little easier. After getting Sophie settled into ballet I called Dr. R back to give him a status update. I told him that her glucose levels are up from the 22 she was at when I first checked her this morning to 73 at last check. This is when he said, I thought you said her level was 63. It was, when I called him, but it started out at 22. His response, “Oh, 22 is low I would have had you come in for fluids right away!” He congratulated me for getting her numbers up so quickly, and then said that he understood why I was hesitant about his lets wait and see plan. He explained to me why Lucy was bluish in color, her cells were busy trying to keep her body running and they did not have enough energy to go around. He also explained that the green bile was because her intestines were slowing down and that green bile is what happens. Oddly I felt better knowing that he would have responded the way that I initially felt he should have.
Ironically, we had an appointment on Wednesday with Lucy’s endocrinologist and we discussed Lucy’s fasting intolerance and hypoglycemia. We all agreed that now that we know we are dealing with mito, putting Lucy through a fasting study is not really necessary. In the future we may want to see just how long she can go without food, but for now we are certain it is not very long!
I am purchasing a bed wetting alarm system for Lucy that will alarm when it detects any moisture. I have also gotten some great advice from some mommies of other tube feeders. Apparently, there is an extension set that is better than the kind we are using for Lucy, they don’t disconnect as easily. You can bet that I will be calling our HHC to get some of those babies shipped out to us first thing Monday morning!