June 15, 2009

So much as happened since I last posted; I KNOW I am really bad about keeping this updated as many of you have gently reminded me!

But, as my excuse is always the same....life is busy....this post, too, will be brief.

Khloe's appt on May 21st went very well. The meds she is on for her heart showed they were supporting it in normal ranges...yahoo! All her limitations were lifted for 2 months so it could be determined if her heart could maintain the normal ranges with normal, 13 yr old girl activities. So from that date until June 8th she did rally well, only tiring out more than a healthy young girl would, but no other consequences. The week before June 8th I was diagnosed with the Flu A virus and obviously quarantined from Khloe, but she started having symptoms that Monday and then on Tuesday her cardiologist asked us to bring her in for an echo as she was starting to have more irregular beat patterns because of feeling ill. As we were getting ready to leave Khloe passed out, came to, then passed out again (much longer version available when I have time to explain). We had to call 911 and they transported us to PCMC where we have been ever since. Khloe's heart was not causing all this, the flu and a Scleroderma flare-up have been determined to be the culprits, but they caused her heart to be in distress. Now, six and a half days later, her heart is back under control, the flu has run it's course and the Scleroderma is beginning to clam down the swelling in her muscles, yet she has developed some vomiting in the last two days that is currently unexplained and keeps causing her GJ feeding tube to come dislodged; it has already been replaced yesterday and now will need to be again after the vomiting stops. We, Khloe and I, get to go home as soon as all this new stuff is resolved, we hope by tomorrow.

Meanwhile, during this time here with Khloe, we also received the sad news that Larry's father passed away on Wednesday the 10th of June. Larry was very torn between being here with Khloe and needing to be with his Mom; he flew out on Thursday morning to Washington after being as reassured as possible by me, and Khloe's drs. He will be with his mom through this next Thursday the 18th which is the day of the funeral in Spokane. We, Khloe and I, hear from him at least three times a day, and the kids at home do, too.

At Khloe's last appt on May 21st she was scheduled for a Stress MRI on July 15th. The plan was for her to do normal activities until then, then do the test which requires the drs to give her medicine that would cause her heart to go into distress, then do the MRI to determine the extent of the damage caused by the Scleroderma. Now the drs are not sure we will stay on that time-line feeling that her heart may need more recovery time after this last bout. I will let you all know when we do. For now I have to end this and get back to her room.

Thanks to everyone who is helping us out, especially with Larry and I both gone from home.