Dear Family and Friends:
We went home very late last night from the hospital and were ALL up here today. Thanks to the Riesberg's for keeping Emmitt and Eli last night and thanks to Gremmy and Papa for coming back into town today to help us with the boys. After picking the boys up today, Claude took them for haircuts, we had some lunch, packed a bag of movies, books, etc. and headed up to the hospital. While we were there, we visited the library, read books, and watched several movies. Although they got a little restless, I'm glad that they were able to see Emory and that at least Emmitt could gain a little more understanding about what is going on.
Upon our arrival today at the hospital, we talked with the nurse and the "fellow" about Emory's condition. They think he is doing better, but mommy and daddy aren't so sure. He does tend to throw up when they stop the feeding tube to feed him with the bottle, so thankfully the nurse is not going to give him the bottle today since that seems to keep more food in him and to keep him calm. That is what my "mommy gut" tells me to do anyway, so I'm thankful for a nurse who sees that as well. He is breathing at about 65 to 75 or more breaths per minute. In addition to increasing his lasix, they have also added another diuretic called aldactone that will help with his potassium levels. We have yet to see how these two drugs will affect his calcium level, which is so important in regards to the DiGeorge Syndrome. In a nutshell, Emory is not necessarily doing worse but he also has not had a ton of improvement. His weight is pretty much the same as when they admitted him into the hospital on Thursday. But, we also don't know if his previous weight gain was from the formula or from extra fluid on his lungs. We really don't have any way of knowing that. Really, there are several issues going on, but the consensus seems to be that if we can get the heart fixed, that everything else will be somewhat easier.
They gave us the option to go home before we have the surgery. They did say that at best case scenario, they would do the surgery the middle of next week, but it could be more like the end of the week. This is due to the volume here at the hospital and the surgeons schedules. They have 3 surgeons and then only so many CICU beds and so many "step down beds". Let me clarify what I was saying yesterday.....Emory's case is critical and necessary; however, when it comes to heart issues and heart surgeries, his is a little on the milder end. After talking with the charge nurse last night, we understood things a little better. When we left the cardiologist office on Thursday, he saw the urgency for surgery very soon. And, when we arrived here at the hospital, they agreed. But, the cardiologist doesn't know the surgeons schedules and obviously don't know how busy things are here, so that is why we have this type of situation.
Claude and I both feel that it is necessary to leave Emory in the hospital until he has his surgery. We feel that by doing so, he will be monitored 24/7, will have documentation of his throw up episodes, will have constant feeds so he can gain more weight, etc. We've seen the actual attending physician (cardiologist) a couple of times, but not much. We have yet to see the surgeon. So, we are home tonight and have church and a birthday party for one of Emmitt's friends tomorrow afternoon. After that, we will both stay at the hospital tomorrow night in order to try and talk to one of the surgeons on Monday morning.
That's about all I can type right now. My eyelids are heavy! I will keep this blog updated daily and will post as soon as we know something about his surgery date. Thank you for all of the thoughts and prayers as well.