I took Stephenie to her visit to Shriner's. They follow her scoliosis and like to see her every 2 - 3 years. I am mentioning this because I believe it will shed some light on her last hospital visit. The scoliosis continues to get more severe. They take x-rays of her back at each visit. Last time we were here they told me her hips were dislocated, slightly. Well, now her right hip is completely out of the joint socket. I've been told that when the hip is moving out it is extremely painful. I believe that her hip was on the way out when we were last at the hospital. There is no way of knowing for sure but it is about the only thing that makes sense.
Her right hip seems to be out now too. There have been no x-rays to confirm this, but she had another horrible week at the end of June beginning of July somewhere in there. Then she just got better. No other explanation really. We go to the Dr. tomorrow for her well child check up. Maybe they'll take an x-ray. More for documentation purposes really.
She is not doing very well lately. Her overall alertness and comfort seem to decline daily.
Monday, July 20, 2009
Saturday, April 11, 2009
3:45 pm
The doctor has agreed to let us go home. We will be packing up and leaving ASAP. We will also try to keep you informed as we continue on this journey. Thank you for your prayers.
Passover 2009
I was almost prepared, the story of my life, for Passover. I found some lamb at Costco about 3 weeks ago. A friend, Julie, found some matza and so on... We were all prepared to have a nice family Seder together. We still had to remove the leaven for the Feast of Unleavened Bread, but all was on track. Then on Thursday night Stephenie's nurse told us Stephenie's oxygen levels were not staying up.
Normal oxygen levels for Stephe. when she is awake, range from 94 - 98. 100 is perfect and she reaches perfection sometimes when she is asleep and on oxygen. When she is asleep her oxygen levels usually fall into the 80's. On Thursday night her oxygen level was 82 awake and on oxygen. Was made all the phone calls and talked to the Dr. via the nurse. We are now at the hospital trying to figure out what is going on.
Her blood work is fine, other than the low oxygen. She has been swabbed for flu, I did not know one could be swabbed for flu, negative on the flu. She has been checked for other viruses like RSV. All negative. Her lungs have been x-rayed, no pneumonia, lungs clear. They did a cath. to check for a urinary tract infection, UTI, negative, more blood work ...more negative results.
At about 12:45 they finally got her formula up to the room so she is now finally eating. (She usually starts eating about 8:00 am.) She has been sleeping all day long which is not normal and her temp is about 99ish. The doctor has not been in yet so I am not sure what they plan on doing next.
Mark, my sweetheart, brought computer in for me last night. (Thank you Sweetheart!!) So, I should be able to keep you all informed without having to contend with hospital laptops and low batteries.
I am doing just fine and am going to try to add another installment to Stephenie's history for you all later today.
1:40 the Dr. just came in. No new news. All tests are looking fine. She wants us to stay so she can keep an eye on Stephe. She asked me what my take was on staying. I told her that as far as I was concerned they were not doing anything that we couldn't do from home. The doctor wanted to confer with one of Stephenie's other doctors, her lung doctor actually. I'm still waiting to hear what he thinks. 2:25pm.
Normal oxygen levels for Stephe. when she is awake, range from 94 - 98. 100 is perfect and she reaches perfection sometimes when she is asleep and on oxygen. When she is asleep her oxygen levels usually fall into the 80's. On Thursday night her oxygen level was 82 awake and on oxygen. Was made all the phone calls and talked to the Dr. via the nurse. We are now at the hospital trying to figure out what is going on.
Her blood work is fine, other than the low oxygen. She has been swabbed for flu, I did not know one could be swabbed for flu, negative on the flu. She has been checked for other viruses like RSV. All negative. Her lungs have been x-rayed, no pneumonia, lungs clear. They did a cath. to check for a urinary tract infection, UTI, negative, more blood work ...more negative results.
At about 12:45 they finally got her formula up to the room so she is now finally eating. (She usually starts eating about 8:00 am.) She has been sleeping all day long which is not normal and her temp is about 99ish. The doctor has not been in yet so I am not sure what they plan on doing next.
Mark, my sweetheart, brought computer in for me last night. (Thank you Sweetheart!!) So, I should be able to keep you all informed without having to contend with hospital laptops and low batteries.
I am doing just fine and am going to try to add another installment to Stephenie's history for you all later today.
1:40 the Dr. just came in. No new news. All tests are looking fine. She wants us to stay so she can keep an eye on Stephe. She asked me what my take was on staying. I told her that as far as I was concerned they were not doing anything that we couldn't do from home. The doctor wanted to confer with one of Stephenie's other doctors, her lung doctor actually. I'm still waiting to hear what he thinks. 2:25pm.
Tuesday, January 13, 2009
update
Stephenie is finally getting to be herself again. She is smiling and awake and seems to be having less pain. The seizures are back to a manageable amount in any given day. It has been a long 3 months. There was a time there that I did not think she would return to her previous state of health.
I'll post some pictures shortly.
Tuesday, October 14, 2008
Monday, October 13, 2008
Recovery
Stephenie is very slowly getting better. In the past she has bounced back to her normal self ( in medical terms this is called "base-line"). She is not there yet. She has been very fussy, which is not normal either. Nearest I can figure she is having belly pain. She also has some sort of cold, very stuffy nose with lots of coughing.
Elizabeth is also coughing and complaining of a sore throat. I think Stephe has what Elizabeth is getting over. In a house full of CF kids coughs are no small matter, especially when accompanied by fatigue.
Please pray for us. Thank you
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