This is what we are doing tonight....Right now Haven is standing in front of me working on a butterfly my friend Aleah gave to her. She has been working on it for a while.
I just thought I'd throw out some news from the Friday visit.
Well we hope we're working on getting rid of the C. Diff - I believe they are giving her a few more days before they decide if she needs to be on a different medication.
Besides the viruses contracted by being in the hospital the doctors are extremely happy with the results so far from Haven's treatment. He even exclaimed to Kris today how much extreme pressure he was under to go in front of his peers and request Hi CY treatment for Haven with no known info as to whether or not this would even do anything. We can tell he is pleased so far.
Her doctor has decided to leave the Hickman line in for now. He said we are not even in a safety zone yet where they would feel comfortable removing it. That at any time she might need to have a medication that requires that line. So as long as it is not infected we will keep it.
Haven has been sleeping PERFECTLY at night and she has been able to make it to the potty about 90% of the time - even with extreme diarhea. She can actually feel when she has to go potty now. She is also feeling some pain. Not as much as normal people but she is feeling it. She definitely has more energy than she did before and just her wanting to exercise and do stuff is awesome.
We still have issues on food and drinking and the 30 other miscellaneous symptoms. I don't have a report on her Prolactin and am not even sure it's been tested since the start of this. She won't meet with Endocrine until the end of Summer for her growth hormone testing and Coritisol levels. She will meet with Pulmonary once she is cleared of the viruses. We will probably move her sleep study out to September or October when she is not in a danger zone. I really don't want any other viruses right now.
But we are so far happy with what we have seen and it's only been a few weeks. We and Haven have so much invested in this medication and the wonders of science and the knowledge of our doctors and we're trying not to get on them about seeing signs. We know her doctors have a lot invested in Haven and her treatments and the hopes that this actually works and can save her from ROHHAD. Only time will tell......
She will have another MRI of the Ganglioneuroblastoma Tumor in September to ensure that it has not grown over the past few months.
Anyway, we're going to enjoy the weekend together and get some more long walks and exercising in.
love to all