Halloween

So we attempted going out for Halloween this year. Well, I did it without Jason since he had to work. It went ok. I did all the talking for Elise while she stood 10 feet back from the front doors, but she did get courageous a few times and took candy from bowls. But her favorite is still waiting for kids to come to our door. Claire was her usual laid back self and enjoyed the candy.

Elise's doctor appt went well. Her cardiologist was happy to see her doing so well. He will consult with hematology and get some labs ordered next week to recheck her anemia and liver function after starting her new med. She has been completely off oxygen for 2 days now, and is satting well at night. Her appetite and energy level are so much better its amazing. We enjoyed lunch at the park today before we went to the appt, which is what the picture of Claire is from.

So first I have to apologize to everyone who has been waiting for a blog update.  We have been crazy busy since coming home from the hospital, but that still isn't an excuse for not keeping all of you updated.  So to my surprise they let us go home late Friday with Elise on oxygen and a pulse ox.  She is continuing to improve and we actually tried her off the oxygen today.  She is still desatting with activity, but re saturates pretty quickly.  She has started her new medicine this week and seems to be tolerating it well.  We will follow up with her doctors on Monday, so I will update the blog after we hear from them.

As you can see Claire came back to us Monday with my Mom.  Thank you to everyone back home that helped watch her while we were in the hospital.  It was hard having her so far away but I knew she was in really good hands and getting lots of attention.  We visited a pumpkin patch yesterday and the girls had a great time picking out pumpkins.  Elise has chosen spiderman, rather spidergirl, this year for Halloween and asks to wear it everyday.  Its really cute.

Thank you to everyone that sent Elise goodies last week, and us cards with words of encouragement.  And thanks to everyone who helped with the dogs, brought food, etc.  We couldn't get through this without all of you. 

So Elise did well with her first unit of blood last night.  She pinked up and was in a really good mood.  It took me until after 11pm to get her to go to sleep, she was being so silly and playful.  It was really nice to see her that way after so many weeks of her not feeling well.  They gave her another unti today and she was napping as I came home to shower and walk the dogs.  Jason is with her while I take my break.  Next step is to start her on a medicine called Bosentin.  It is a drug specific to PH, but is not FDA approved for kids so there is a lot of paperwork to go through.  It causes liver toxicity so she will have to have monthly lab draws, and it has teratogens so I will have to wear gloves when handling it.  She is still very deoendant on her oxygen and we are still trying to figure out why.  Her cardiologist here is going to consult with her cardiologists in St. Louis to help figure things out.  Hematology is still working on a cause for the anemia too.  So she will remain in the ICU throughout the weekend and possibly into early next week.  They will not release her when she is so dependant on O2.  Jason leaves this weekend for a conference in D.C., so I will be at the hospital round the clock.  Luckily we have some amazing friends who are going to help with the dogs.  Thank you guys!
I'll post again tomorrow evening. -Kristin

So the pole behind Jason's head has the blood for Elise's blood transfusion hanging on it.  Jason donated his blood yesterday and Elise is getting it today.  Her heart rate and respirations have come down since yesterday but her need for oxygen is still high and she desats very very quickly.  She is homesick, but is a real trooper with all the blood draws and meds that she is having to take.  It's hard for a 4yr old to not be in control of anything around her.  She is frustrated and tells everyone who comes in the room to "go away!"  We are still looking for a cause of the anemia so we know what to treat otherwise this blood transfusion will just be a short term fix.  Doctors think she will be here for another "several days" still.  Thank you for all your thoughts and prayers.  Claire is doing well hanging out with family in Missouri, Jason and I miss her so much, but know she's in good hands.  Love you all, I'll update again tomorrow eve. -Kristin

So Elise hasn't been feeling too well over the past month and worsened over the weekend.  She is now in the pediatric ICU here in Gainesville.  I am staying with her 24/7 while Jason works.  Claire is with my mom and dad and all of Jason's family back in Missouri while we figure out what is going on.    
She is on continuous oxygen, on monitors, and is anemic.  So they are testing her for causes of the anemia and worsening shortness of breath.  Jason has donated blood to give to Elise hopefully by later tomorrow or Wed.  We have a viral test that is out that should be back tomorrow to see if she has some crazy virus that is making her sick.  And they are running other tests to look for a cause for the anemia.  Not sure how long she will be here or how long she will be on oxygen.  I'll update again tomorrow when i know more.

 Tailgating has started up again, and the Elise was really excited.  Claire seemed to catch on pretty quick.

 We traveled home to Missouri couple weeks ago and had a great time.  We were able to see all the family a couple times.

 Then we made a trip to Spokane Washington for my Aunt's wedding.  This picture is of my Godmother Aunt Sue with her daughter, my Godchild, Samantha, who is Claire's Godmother.

 Elise was the flower girl at the wedding although she didn't walk down the aisle by herself.  I had to carry her because she was too scared.

 We couldn't wait to get home after many, many flights.  There is just never enough room on an airplane.

On a different note, Elise hasn't been doing so well.  Her PH has seemed to worsen over the last few weeks.  As you can see by the picture she is on Oxygen at home when needed and we added back Viagra to her meds.  She had a cardiac cath done once we got back and they found that her pressures are just as high as they were back in 2009 when she had her last cath which isn't good.  They also found that she is anemic which doesn't help her oxygen saturation.  So now we have increased her Viagra to a max does and added a daily iron supplement.  She will also see a hematologist which is a doctor that studies blood disorders to see if we can figure out why she is anemic.  Her cardiologists may also add a 3rd med called bosentin, but that is still a few weeks off.  We aren't sure if she got a virus that made her worse, but what we are sure of is that she didn't improve over the last 2 years like we thought she had.  She is in good spirits each day and is still going to school and therapy but tires very easily and is short of breath a lot.  So I'll let you guys know something when I know more.  Love you all, thanks for your thoughts.  Kristin