I apologize for not posting sooner. Life around here has been crazy busy...as usual. So, here's the update to let you know what's gone on the last several days.
The cardiologist explained that it appeared to him that we were assuming that everything would be 'all better' with Jacob once the heart surgery occurred (which we were - because that is what all the doctors were telling us). However, in his experience as a cardiologist with patients just like Jacob, we needed to be aware that his problems with things such as the reflux and issues with feeding were not going to go away once the surgery occurred. He explained that a normal child would probably grow out of the reflux but Jacob is not normal and will most likely need some sort of surgery to repair the issues with reflux. Normally, they would suggest that he get the reflux taken care of before the heart surgery, but because of how fragile Jacob is, the heart surgery must be done first. However, the heart surgery cannot be done until he gains weight which is where the reflux becomes a problem. Thus, creating a bit of a catch 22
for Jacob. The cardiologist also mentioned that the pediatrician has done nothing to help create some sort of plan for the care of Jacob - she seems to just be reacting to all the diagnosis but not doing anything to help get him better. He suggested that she needed to become the 'quarterback' so-to-speak and take charge of the situation. Since she is the only doctor who will be with Jacob long term it is logical to think that she should be the person who creates the plan of attack, coordinates with all of the doctors, and makes sure that Jacob gets the care he needs in order to take care of all of his problems. This would take care of the problem we have of all the doctors changing the diagnosis of the previous doctors by putting her in control and making the final decision on everything based on all of the information the specialists provide. KC and I both agreed and promised the emergency room doctor we would talk to the pediatrician.
I finally got to talk to my doctor around 2PM the next day. Yes. Almost 24 hours later - and 36 hours since his last oral feeding I talked to my doctor. I explained to her what we had done, and the fact that we were not happy that we had to wait so long on a matter that had sent us to the hospital twice in the last two weeks. She agreed and said that she'd talk to her nurses about the issue and have them call her at home, since this is what they did on other matters with other patients. We agreed to meet on the 21st after I meet with the cardiologist to discuss Jacob and his feedings in more depth.
So, just when I thought things were getting better and calming down, today my husband KC came home and wound up having a 104.8 degree temperature. Soooooo off to the emergency room we went again. I got to see KC hooked up to many of the same machines that Jacob had been hooked up to - IV, oxygen, heart rate monitor, respiratory monitor, breathing monitor, blood pressure cuff, oxygen level monitor, etc. He even got a lumbar poke to check for meningitis like Jacob did. It was a bit surreal. Somewhat eerie. And I'm VERY VERY happy that they ultimately couldn't find anything wrong with KC and we were home a mere 6 1/2 hours after we entered the emergency room.
While we were at the emergency room, I had Elisha home with Courtney and Jacob and realized that this was not an acceptable option for her (I can barely take care of the two children on my own during the day - how was my 15 year old supposed to do it?). Luckily, one of her friends' moms is a nurse and was willing to take all four of my kids while we were in the emergency room and take care of Jacob and give him his medications while I was with KC.
When I finally came to her home at 11 p.m. to pick up Jacob they packed everything up including his medications. As they were packing, I noticed that she had a purple box of pills in the diaper bag. I asked Melissa if these pills were what she had given Jacob (he was supposed to take 1/2 a Previcet pill twice a day) this evening. She said that Elisha had given him his pill, so I looked at Elisha and she looked at me and said, "Yeah". I looked at both of them and said, "Well, at least we know he won't be getting pregnant!" Elisha had taken my birth control pills rather than the Previcet and had fed them to Jacob!!! :)
What a perfect ending to another wonderful day! But at least THAT is one boo boo we can laugh about! :)