 Update - Saturday, February 21, 2009 10:44 AM
Journal February 21, 2009 4:40pm
The Dr. has come by and has determined that Madi will not be going home today. She is pretty sad about this. We will be doing the MRI/MRV of her head and neck this evening here at Wake Med. Unfortunately, the line that was put in her arm appears to be having some issues and right now they are trying to determine whether or not she will have to have dye for the MRI. If so, she will have to have a new line put in as the one she has can't take anymore. Madi's veins have been stuck to death since she was originally diagnosed with Leukemia and haven't been very cooperative becasue of the scar tissue. Hopefully, if we have to do this, it won't be as tough as it was when we got here on Wednesday. Thank you for your prayers!
Journal February 21, 2009 2:10pm
Madison is still in the hospital but had a much better evening last night and slept well too. She really wants to go home. Today, she woke up and was feeling good however, she's become increasingly droopy as the day has pressed on. We have not yet seen the doctor today. We're going to have her take a nap and see if she's feeling better. We still remain hopefully optimistic that they will let us go home. Her bloodwork that we had done looks great! We aren't sure yet if they will do her MRI-V while she's in here or not. It's actually scheduled at Duke, but not until March 31st. We'll update again soon.
Journal
February 20, 2009 1:15pm
Madison is still in patient at Wake Med. Yesterday, she stayed in the bed for the exception of using the bathroom. Her head was still pretty bad. We've have kept the blinds drawn and the lights off, that seems to help a little. The doctors said that it could take a couple of days for the meds to kick in. This morning, Madi is feeling a little better. Her head still hurts but it's not 10 as it has been. She says her pain number is seven. Duke taught her to rate her pain on a scale of one to ten, ten being the worst. A little while ago we took a short walk to the fish tank and back. That was progress! They have made no mention as to when they think we may go home. They really want her head to stop hurting altogether.Thank you for your prayers and concern we will update soon.
Journal
February 18, 2009 10:30 pm
The high powered drugs we've given Madi to help her get rid of her Migraine have been unsuccessful for three days. She had a rough day today and has been admitted to Wake Med. We will be in for at least a few days. They are going to give her DHE to help give her some relief. Ideally, this will be successful in kicking this migraine. It should also give her body a chance to rest a bit. She is okay, but also exactly where she needs to be. They've done bloodwork but we have NO reason to believe that it will be abnormal. Thank you for your prayers.
Journal
February 17, 2009
10:00 pm
Sorry it’s been so long since last update. We’ve been busy on the trail of “hurry up and wait”, which seems to be the reoccurring theme of our lives…So rather than rambling, I try to wait to post until I have something to report.
We have been awaiting her sleep study results. They are in, and the test was positive for “Mixed Apnea” which is a combination of both Obstructive and Central apnea. Apnea is defined as no breathe for more than 15 seconds. Obstructive apnea is when the brain sends the signal to breathe but when the person tries it’s obstructed for some reason. Central apnea is when the brain doesn’t send the signal to breathe, so the person doesn’t and apnea occurs.
Madi’s test was also positive for a “Hypoventilation”. In clear terms it means that she had too much Co2 in her system.
This week on Monday Madison was seen by her Neurologist. His overall feelings on the sleep study were that the way the report was written left a lot to be desired and more questions. He felt like it might add value to have the study repeated and UNC Hospital and to add an additional study to it called MSLT. For the MSLT study they take the entire next day after the sleep study and have the patient take naps several times through out the day. If the person is able to achieve REM sleep during those naps, it causes greater concern. We aren’t sure yet whether or not we will do the study again.
Madison actually had a migraine while we were at her Neurology appointment and we had to give her the rescue medicine. She was feeling so bad when we arrived that she actually crawled up on the table and went to sleep. I’ve actually never her seen her do that before! The Neurologist further feels that it’s time to go ahead and get an MRI-V of chest, neck, & head. He is getting with Hem-Onc to get this scheduled at Duke. He specifically wants to see if she has any blockages in her head. Since we know that she has them in her chest he wanted to go ahead and shoot the neck while he was in there. If there are any in her head, he wants to know exactly where they start and stop. He doesn’t want to go a back in later and order another test that will expose her to more radiation. Seemed like a pretty good idea to me. I like this Neurologist. He’s at Raleigh Neurology and we’ve had a great experience there. (Every Time)
We went to the Pulmonologist today and really don’t know too much more than we did before. His feelings were that the “Mixed apnea” on the sleep study was something that we could watch. He further wasn’t completely convinced that the Co2 levels that were elevated for 100% of the study weren’t due to a false reading or faulty equipment. We were there for more than four hours today. She did all their pulmonary function testing as we do each time we go and we had the same abnormal numbers that we’ve had the last five times. By the time he got to us, the lab was closed and couldn’t do an independent read of her Co2. He said they’d do it next time….. (Rather frustrating!)However, my neighbor is a Paramedic so we had him come over and do the test. The results of that reading were above the normal range in line with Duke’s reading. He is going to check it several times over the next couple of weeks. We’ll just have to wait and see where this takes us.
Today they prescribed her an inhaled steroid that she is supposed to take twice a day. They hope to see improvement in her function testing next time we go. They are still calling her issue “Small Airway Disease”. Madi is scheduled to go back to Pulmonary on March 31st.
Unfortunately, Madi’s migraine from Monday has been constant. The rescue medicine was too little, too late. Tonight we had to give her “Toradol.” Hopefully, tomorrow she will awake free from headache.
We keep waiting for some big answer to all these questions, but they really aren’t coming. So I guess until we come up with plan B, we will continue on the path we’re on. If anyone has suggestions, we’re certainly open to hearing them.
Please continue to pray for Madi.
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