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.
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.
4 comments:
Hi Liz! Our prayers are w/ you.I need to get in touch w/ you as soon as your able. Thanks! Rosemary.
Nana Star is proud of BOTH of her girls! I Love you and my prayers are with you.
Hey Gracie,
I was just reading your blogs on how you were doing and I wanted to wish you good luck. My prayers are with you.
Christy
Hang in there! Our thoughts and prayers are with you.
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