Let the tests begin...

Tests, Tests, & More Tests!

Coming to National Jewish Medical Center is not anything you would ever expect. That’s not bad, but it is a bit overwhelming. We checked in on Tuesday and right away was given a schedule, or somewhat of a overview of what Graice and I would be doing for the 2 weeks that we are here. The neat thing is that they work on more then just the physical side of the problem. They understand the emotional toll having a cronically ill child takes on the parents. Everyday they have a group counseling session for just the parents. Also you have one on one time with a counselor. They want to make sure you are at your best so you can understand what is going on. On Tuesday we mostly explained several times why we where here and Gracie’s past medical history. Gracie was kept over night on Tuesday so that they could just obseve her to get a feel on how she does while she sleeps. The good news on Tuesday was that we got into the Ronald McDonald house. So before checking into the hospital for the night we went and unloaded our things at the house. We checked in to the hospital at 7pm and settled in for the night. Thankfully we had an uneventful night. On Wednesday morning we got up and started testing right away. Our day went something like this… X-Rays at 9:00 am, Daily Vitals and Exam at 9:30, Art Group for Gracie at 10:00, Art Therepy for Gracie at 11:00, Group “Coping with a cronically ill child” for me at 11:00, Lunch at 12:00 pm, Then Gracie had ree Run at 1:00, that is where they test here breathing levels during heavy exercise. Then at 2:00 pm Gracie went for a pulmonary function test. That is where they but Gracie in a booth and she has to breath into a mouth piece so they cane see how well her lungs are working. That test took over an hour. So if that seems like a long day it was and she still had one more test. At 5:00 pm Gracie went to have 2 CT scans done. One on her lungs and the other on her Sinuses. After that we where done for the day. We came back to the house and made dinner. Than they had a Bingo party. That was a lot of fun. We even won and Gracie got to pick out a prize. She picked a new Barbie. At about 8:00 pm we where exhausted so we went to bed. Thursday is going to be very long as well. Not as many tests, however the tests that they are doing are going to be more difficult on Gracie. They will be putting a tube down her nose and leaving it for 24 hours. This will again require Gracie to stay over night in the hospital. So where we check in on Thursday morning we will be at the hospital until Friday late afternoon. I am very glad that we are here. I am happy to meet other parents who understand how I am feeling. Right now though I am very tiered. This is very difficult. Gracie has been such a little trooper. She knows that on Thursday the tests are going to be uncomfortable. She said it will be ok right Mom. I love her spirit. She is trying really hard. She seems very grown up all of the sudden. She does what they ask, when she doesn’t get it right the first time she says to me “Mom I really am trying”. What can I say to that? I know she is. On Friday we will sit down with the Doctors to get our first round of results. We will then have the weekend off. Gracie and I plan to go and find some really fun things to do. We will let you know what we find. Sorry for any typo's I wrote this at 3 am when I could not sleep.

We made it to Denver

Thank You for all of your prayers everyone. We made it to Denver today. The weather was not to bad. We ran into a little bit of snow here and there but nothing to bad. We are very greatful to some friends here in Denver who have let Gracie and I crash for a night. We are hoping to get into the Ronald McDonald house by Wednesday. The house is only 2 miles from the hospital. We look forward to the next few days getting started on all of the tests. The sooner we start the sooner we will hopefully get Gracie all better. Again Thank You to everyone for all of your thoughts and prayers.

Early Morning Ride!

Gracie has been sick again this week. And as luck would have it, Alan had to go out of town for work. It has been a very difficult week. Gracie started to get sick on Monday. I kept her home and just kept an eye on her. On Tuesday she was a lot worse. I put her on the pulse ox machine that I have for her at the house, just to see where her Oxygen saturation level was. (She needs to be over 90) She was at about 90 to 91. I went about getting the other kids ready for the day. Then I heard the alarm on her machine going off. I ran into her room to see her oxygen level going down. At 77 % I started moving. I had to wake her up and get her moving. Thankfully that brought up again. I called the doctor and we went right in to the doctor. At the Dr's office they got her stable and from there sent us to her specialist. They where having a difficult time keeping her levels above 90. In one last effort to keep her out of the hospital they gave her a high dose of steroids. Thankfully that seemed to work. So after 3 hours at two different Doctors we went home. Wednesday Grace woke up and seemed to be doing much better, so we got everything ready for Valentines Day thinking she would be returning to school. When we went to be Wed. night I put Gracie back on the pulse ox machine in my bed so I could be close, and to be sure she could go to school on Thursday. Starting about 11pm the alarm started going off. For some reason in my sleep I saw her oxygen level was fine and just ignored the alarm for awhile. Finally at about 2 I woke up enough to realize the alarm was going off due to her heart rate was low. I started watching what was going on. At 3am I called our nurse line. She said to call the Dr and see what he thought. So I woke up the Dr and he instructed me to call 911. So I called. After I hung up I went into panic mode. I called Alan and woke him up, then called and woke up two other friends to come and help me. One friend stayed with the other 2 kids, and our other friend followed Grace and I. After running a few tests at the hospital they put a 24 hour monitor on Grace and sent us home. Alan decided to take a flight home. SO we where very happy to have Alan home with us last night. Today (Friday 15) we have an appointment with a pediatric Cardiologist. So we will see how it goes. We just though we would keep everyone posted on how Gracie is doing. We have received so many encouraging emails form all of you. Thank You all so much.

On Our Way!

National Jewish Medical Center called today and finally gave us an appointment. We are to check in at 7:30 am on Wednesday March 5th. We are happy to have a date set. Now we can plan around that. We now will get everything ready to go. Things like who will take care of Ethan & Kelsey? And is Alan and Liz going or is Alan staying home. At this point we know that will all work out. Now Liz gets to make the rounds back to all of the Doctors and the hospital to pick up all of Gracie's medical records. That should only take from now until we leave. :) We wanted to set up this blog for our frinds to have somewhere to go to see how we are doing. From now until we go there won't be a ton to tell about. However we are hoping on the 5th or 6th be updating at least every other day. So please check often for updates, as it will be very difficult for us to call everyone we care about everyday. Please also keep Gracie in your prayers. The test that she will be going trough will not be easy on her. She is not old enough to understand the importance of why we are doing this. So your prayers will help a great deal. Thank You so much to all of you for your love and support.