Ok, so here goes and bear with me.
We have had some extensive conversations with the doctors to let them know our general frustrations with the lack of communication we are feeling at this point. I think that was a great thing, because we got some big answers today.
First an update on Kathryn's status: when I left today at 2:15 (because the unit closes), she was down to 2 liters of oxygen. I have no idea how because they made no changes to her treatment. I was with her, holding her, most of the morning, and I know that about a million prayers went up for her and those two things combined is the only explanation I have. She was still holding on her feeds since midnight last night, however, Dr. Lozano came in (on his day off) and has added back the bottle feedings so she should get one very soon!! They have also decided to start her on a new medication to help with the pulmonary hypertension called Sildinafil, which is a form of a very well known drug - Viagra! (Isn't that strange??)
Now on to the clarity of her situation: Dr. Troxler (pulmonology team) confirmed this morning that she is in fact being treated for meningitis. They can not pinpoint whether it was viral or bacterial for several reasons, but they can confirm meningitis because she had white blood cells and red blood cells mixed in the spinal tap testing that they performed. Also, earlier in the week, she had an echocardiogram done by the cardiology team that showed she had some inflammation in the arteries to from her heart to her lungs that would indicate pulmonary hypertension which is high blood pressure in the arteries that supply the lungs. This is very common in BPD babies (or broncho pulmonary displasia - meaning chronic lung disease). So at the time that they noticed it they did not think it was a big deal since it is common in BPD babies. Now that Kathryn continues to rely so much on Lasix (she is getting them twice a day - with the ability for an extra dose if needed), she is adding extra strain on her pulmonary hypertension which is making it more of a factor than before while she is fighting this infection. So in order to allow the Lasix to do what they need to do without raising her oxygen requirements they have added the new medication - Sildinafil (Viagra). They do not necessarily think that she would need to come home on either the Lasix or the Sildinafil - they think that these two things are a result of fighting infection and that they are counteracting each other.
So you can see that we finally got some clarity today. As long as Kathryn continues to do well on decreased oxygen and shows signs on staying stable she will be eligible for a room again. We hope that will be Tuesday or Wednesday at the latest. Please pray for continued stability. Pray for good responses to the medication. Pray for continued wisdom for the doctors - some days I feel like they need it more than others!! Pray for peace and comfort for Madelyn - I know the last six months have been strange for her, but she seems to think it has been one tremendous party!! Pray for Greg and I for some much needed peace of mind, relaxation, and time together as we have a few days together until Kathryn returns to her own room. Although we would like to be with her, it is giving us some much needed time for the two of us!!
Sorry for the novel - I will write more as things change. Please know that we appreciate all of the prayers, calls, and emails. If we don't respond, please forgive us!