Thursday, November 15, 2007
The Princess and The Queen Current mood: cranky
The Queen is tired and the Princess is great. That's my blog for today! Thanks for stopping by
Just kidding. 8 days ago we were told that Dr. Hanley wanted MJ to be put on IV antifungal medication because her culture from the 17th of October grew out a type of yeast that LOVES to invade the heart valves, and the infectious disease doctors and cardiologists did not think that it needed to be treated. Dr. Hanley ordered it, so she was put on meds. The infectious disease docs wanted to see what drugs killed the yeast so they ordered a sensitivity test to see. We were told that the sensitivity would take 24-48 hours and if the results came back that she could take fluconazole through her g-tube then they would switch her to that and we could go home.
Well, we JUST got the results yesterday from the lab. What was supposed to be back within 24-48 hours took 7 and 1/2 days! Not only that but infection disease docs changed their story and told us yesterday that they want her to have 7 more days of IV meds and that by mouth meds were not an option. To say that I was pissed would be putting it mildly. We were told one thing and got our hopes up that we would be able to go home this weekend and then a new doctor comes on Monday and completely changes the plan. Also, they want to check her heart, kidneys, liver, and spleen once she finishes up the antifungals to make sure that no fungal spores are there. (they never were there to begin with, thank God--but they want to be sure none migrated there) So, we are here at least until next Wednesday. She will receive her last dose of fluconazole IV on Wednesday night. The nurse practicioner said that we could do her ultrasounds on Wednesday since Thursday was Thanksgiving and that we should be able to hopefully be discharged Thursday, if nothing else goes wrong.
That would be a huge blessing because there are still seats available on the flight that my family members are going home on on Friday. That would mean that we could not only have Thanksgiving together at the Ronald McDonald House with MJ but also that I would not have to pay $300 for a plane ticket for her. We will have plenty of people to hold her on the plane ride! We will see how she does over the next week.
The throwing up seems to be better the past few days. She went through lots of tests on her GI system since I last updated and the conclusion is that her Nissen has come unwrapped. (the surgery that she had to keep her from throwing up) I could have told them that because she has been throwing up since the end of August. Obviously it wasn't functioning right or she wouldn't have thrown up. The decision that we are waiting for now is whether the pediatric general surgeons recommend redoing the Nissen or just seeing how MJ does and hopefully she will outgrow the reflux. We would all like to try managing it medically instead of surgically right now since she has been through so much.
She lost A LOT of weight over the last week. She was up to 11 pounds 9 ounces, which is the most that she has EVER weighed. Then the throwing up started and she dropped all the way down to 10 pounds 15 ounces. However, since Monday, she is back up to 11 pounds 7 ounces. If we can keep the formula in her, she gains 3-4 ounces a day. That is more than an average baby, but she has about 3 pounds to make up to be at the weight that she should be. We will get her there slowly but surely We just have to have faith and lots of patience.
Steve flew home on Tuesday but will be returning on Saturday so that he can spend Thanksgiving with us. I miss him when he isn't here but he desperately needed a break. Thank God my mom is still here!
So, in a nutshell here is the plan. MJ finishes up IV meds on Wednesday. She will have her ultrasounds on Wednesday afternoon. If everything looks good, she will be discharged on Thursday (Turkey Day) with hopes of flying home on Friday, the 23rd. Please pray that she will not have any more setbacks between now and then.
Thanks for all the prayers and by the way the internet is working here again, thank goodness!!
Much Love
Bethany Jane