March 26th; Happy Birthday Kimber!

Wow! Where to start? I know you are all waiting to hear how Khloe's Tuesday and Wednesday appts went but they ended up being more than what was expected so here goes...

Tuesday went well; her appt with the dr following her scleroderma showed the swelling down in her knees and they decided to reduce her Prednisone which made her happy, though the trip itself made her very tired. We then went to the lab for blood work and they had trouble drawing from her PICC line so called our home health nurse and arranged for them to come do a "TPA" (a medicinal treatment to clear clogging in the line) that night. As part of that the nurse always does routine vitals checking and everything was normal. Then Wednesday morning at 5:30 I am woken up by hearing Khloe whimpering in her sleep and when I got down to her she said she had stabbing pain in her head whenever she moved and I realized she had fever. I called our nurse to see if the TPA could cause this and she said no and then called the cardillogy dept at Primary. The called back right away and told me to bring Khloe right in.

It seems Khloe developed an infection in her PICC line, an esecially big worry becuase the line connected to her heart, so her appt with the heart failure specialist turned into being admitted to the hospital, having the PICC line taken out and put on a big combination dose of antibiotics by IV for the next 24 hours. Khloe was in a lot of pain and then very, very tired most of yesterday but the fever broke in the late afternoon and she responded well to the antibiotics so by mid morning today plans were confirmed to send us home.

Before we left we did get a longer visit with Khloe's new heart specialist and we both like her very much. She specializes in patients with heart failure and is one of the top in her field. She went over all the prior information we had been given; in short Khloe's scleroderma has moved to her heart and will continue to progress, eventually causing her heart to stop, and because of this she is also experiencing hyper and unbalanced rhythms that could cause a more sudden expiration of her heart. Then she went on to say that while her fellow cardiologists were all correct in their diagnosis and treatment of Khloe while she was in acute heart failure in the PICU, a different approach is used long-term with heart failure patients. Her plan is to help and encourage Khloe to do as much normal activity as possible for as long as possible rather than limiting her (wheel chair, little walking, home bound unless necessary). With patients like Khloe, where the outcome can not be corrected or reversed by medicines, therapies or procedures, quality of life becomes the priority. She will be working closely with us to continue to regulate Khloe's heart meds and to tweak them when necessary, as well as keeping updated on her exercise (ie: how far can she walk before breathless) and of course continuing echos and MRIs . We see her again on April 16th (Kindahl's B-Day) where we need to give her an update on how active Khloe has been able to be and she will do a day's worth of testing the medications to see how they are supporting her.

So Khloe will now be working on slowly determining what activities she can do starting with being up and waking around the house and even trying the stairs as long as she can sit and rest on the landing. The doctor has warned Khloe that suddenly standing up or even sitting down quickly can cause her blood pressure to spike or drop causing light headedness/dizziness and the possibility of falling so she needs to take things slowly but our goal for the next month is to see if she can work up to walking for 10 minutes She can now plan outings with friends such as trips to the mall or a movie with the only quallifiers being that she is to avoid peak times at those places when there are a lot of people as there is always the chanceof picking up a virus that can affect her heart, and to plan out how much standing/walking will be necessary and opt to take her wheel chair if it will help. She is still to be out of school and on home services the rest of this school year but that was a minor thing for her to give up since she has already missed so much. We started with her aitivites tonight by joining the rest of the family for Kimber's birthday dinner at our local Chinese restaurant; Khloe was able to walk about 8 steps before being out of breath but then was able to sit at the table for over an hour of dinner fun before geting up again and she was thrilled with being able to go (I can already see the wisdom in the dr's plan).

I did not think I would have more examples of routine changes so soon but these are good ones, though if/when her meds get changed again I think I will qualify to work in a pharmacy! Khloe asked me if evey other time we go to the dr's now will she end up being admitted and I said I certainly hope not! What a crazy 24 hours!

But what a great ending... it made little Miss Kimber's day that after being apart as a family so much this past month we could all be together for her birthday blast and it was pretty special for all the rest of us, too.