Last night my mom called and left a desperate message with the HPS Network telling them the situation. The short version of the story is that they contacted Kevin O’Brien, a Nurse Practitioner at the Human Biological Research Center in Bethesda, MD. He was immediately very interested and called my mom back this morning! Hold on to your seats…
They are currently working with four other adopted Indian children with HPS at their facility right now, two of them being 21 yr old girls! The doctor was very interested to know of the region in which Katy was born. They will eventually do genetics testing on Katy, and who knows what they may find…
Mr. O’Brien works with Dr. William Gahl, a GI Specialist who has had experience with HPS patients. He is going to call our doctor (who is also a wonderful doctor) and give her instructions on what to do for Katy immediately. The team there is anxiously waiting to see Katy and are excited to help her!
Mr. O’Brien has emphatically stated that time is of the essence, but he said that he was totally hopeful that Katy would recover from this bout. For immediate needs, Katy will need a platelet transfusion, steroids, antibiotics, Remicade for bowel inflammation, and should not eat any more food until her bowels have settled down. He also wants them to change Katy’s IV with more nutritional supplements. Once her pain is under control and bowels have settled, we will take her to Bethesda, MD. [Can you tell I’m not too concerned about medical confidentiality here?]
Please Pray that the people at Roanoke Memorial Hospital will respond quickly to what they’ve been asked to do.
Katy may need some additional surgery. The future will bring more tough times, but there is much hope as well. Mr. O’Brien encouraged us that they are making great strides in research on pulmonary fibrosis as well, and not to worry about the future (that is another side effect of HPS - read Aug 9 post).
Last night, my parents were crying out to God during much of the night, desperate for His mercy. The answers have come faster than we can record them today. Psalm 30:5b - “Weeping may tarry for the night, but joy comes with the morning.” We are so thankful for God’s kindness.
There’s a little more interesting news. Part of the process of connecting to the right people was through a journalist in Kansas named Heather Kirkland, who also has HPS. We have not spoken to her, but she gave the HPS Network the names of these doctors that are looking to help Katy. Heather keeps her own blog, which is http://www.heatherkirkwood.blogspot.com/ We look forward to talking with her and thanking her for helping us!
Thank you so much to all of you who have prayed for us when we were almost too weary to pray ourselves.