Monday, March 30, 2009
here we go again
Real quick (because I need to go to bed) Sunday morning Allison went into respriratory distress and I took her WVMC. With an xray we could see hazy lungs and that shehad labored to breathe hard enough to suck her stomach up through her previously repaired diapragmatic hernia. I shortly thereafter found a blood in her stomach. They transferred her by ambulance to ICU at Doernbecher where they pumped her full of antibiotics, took blood and other fluids to do cultures and tests to rule out any other respiratory bugs...we are still waiting for all the results. I still say aspiration pneumonia because after 24 hours of some major antibiotics she is off oxygen and her vitals are stable. She is however still bleeding and going to get a more permanent IV call a PIC line. On Thursday the 2nd she will have an exploratory procedure to find out what's happening inside with the esophogus, hernia, stomach, bleeding and diaphragm...we will then make decisions from there. We are also left with coming up with a long term solution for better managing her airway so this doesn't happen again or continually reoccur. We don't know that answer yet.
Saturday, March 14, 2009
Time flies
Wow, has it been 2 weeks since we last posted already? It boggles the mind. In some ways it seems like yesterday, and in other it seems like 3 months ago.
Good news and some bad to report this time around. Good news first.
#1. We have nurses for another 2 weeks! The Dr's got together and all wrote letters of recommendation to the insurance company that we, as a family, needed nursing care for Allison. That will last thru the first week of Jeff's vacation. Praise the Lord! #2. The Developmental Disabilites director for Yamhill County came to the house a couple weeks ago and talked to us at length about Allison and our family and has made a recommendation that we receive 25 hours a week of respite care. Starting after the nursing care runs out and going for at least 2, if not 3, months. He also discussed with us the possibility of getting some other forms of assistance as well. The respite care is just the start of what may be available.
#3. Amy has a weekend planned that will get her out of the house and away from it all for 3 days. She is going to Washington to see some family and an old dear friend from school. Hopefully she'll return from that well rested and recharged.
#4. Jeff has almost 3 weeks off work starting the 21st of March thru the 7th of April. Sleep, sleep and more sleep. Hopefully that, along with a couple nights out with friends, and maybe a 2-3 might stay somewhere with Amy, will get him recharged and equipped to handle the next couple months. Another week vacation coming up in June will help also.
Now for some of the bad news.
Allison had a regularly schedule EEG this week at her neurologists office to check her brain output for seizure activity and give us an indication of what the next step will be medication-wise. It couldn't have come at a better time because she has been having even more difficulty sleeping over the last couple of months. She's not been able to really nap at all during the day and not sleeping more that a couple hours at a time throughout the night. The result? She is having nearly constant epileptical type seizure activity. And not only is it constantly happening, it has increased exponentially since the last EEG. The seizure activity is causing her to wake up in the middle of the night and not allowing her to go back to sleep. So the immediate reaction to that is HOLY CRAP! The thought is that she has built up a tolerance to the anti seizure medication that she has been on for almost 2 years now and needs to be changed to a different med. So that is already in the works. We have to slowly wean her off one med while gradually increasing the dose on the new med while hopefully counter balancing each other in the process. On top of that there are new side effects for us to be watching out for. Those side effects include (of all things) sleeplesness! GREAT! But hopefully she wont experience any of the side effects and it will help diminish the seizures.
Secondly, Allison was back in the ER over the last couple weeks, with pneumonia again. They also think she's fighting RSV also. The Dr's put her on a couple different antibiotics and she seems to be feeling better. Keala spent a couple days with runny nose, cough and fever, the Jeff got it. His forced him to call in sick one day because he completely lost his voice. Kinda hard to work as a 911 dispatcher without a voice. He sounded pretty horrible the next couple days but made it to work anyway.
Amy is beat, drained, exhausted and pretty much ready for a significant break. We really hope her days away will help. 1 more week!
Keep Allison (and our family) in your prayers. I already know you do, but we believe every little bit helps.
Good news and some bad to report this time around. Good news first.
#1. We have nurses for another 2 weeks! The Dr's got together and all wrote letters of recommendation to the insurance company that we, as a family, needed nursing care for Allison. That will last thru the first week of Jeff's vacation. Praise the Lord! #2. The Developmental Disabilites director for Yamhill County came to the house a couple weeks ago and talked to us at length about Allison and our family and has made a recommendation that we receive 25 hours a week of respite care. Starting after the nursing care runs out and going for at least 2, if not 3, months. He also discussed with us the possibility of getting some other forms of assistance as well. The respite care is just the start of what may be available.
#3. Amy has a weekend planned that will get her out of the house and away from it all for 3 days. She is going to Washington to see some family and an old dear friend from school. Hopefully she'll return from that well rested and recharged.
#4. Jeff has almost 3 weeks off work starting the 21st of March thru the 7th of April. Sleep, sleep and more sleep. Hopefully that, along with a couple nights out with friends, and maybe a 2-3 might stay somewhere with Amy, will get him recharged and equipped to handle the next couple months. Another week vacation coming up in June will help also.
Now for some of the bad news.
Allison had a regularly schedule EEG this week at her neurologists office to check her brain output for seizure activity and give us an indication of what the next step will be medication-wise. It couldn't have come at a better time because she has been having even more difficulty sleeping over the last couple of months. She's not been able to really nap at all during the day and not sleeping more that a couple hours at a time throughout the night. The result? She is having nearly constant epileptical type seizure activity. And not only is it constantly happening, it has increased exponentially since the last EEG. The seizure activity is causing her to wake up in the middle of the night and not allowing her to go back to sleep. So the immediate reaction to that is HOLY CRAP! The thought is that she has built up a tolerance to the anti seizure medication that she has been on for almost 2 years now and needs to be changed to a different med. So that is already in the works. We have to slowly wean her off one med while gradually increasing the dose on the new med while hopefully counter balancing each other in the process. On top of that there are new side effects for us to be watching out for. Those side effects include (of all things) sleeplesness! GREAT! But hopefully she wont experience any of the side effects and it will help diminish the seizures.
Secondly, Allison was back in the ER over the last couple weeks, with pneumonia again. They also think she's fighting RSV also. The Dr's put her on a couple different antibiotics and she seems to be feeling better. Keala spent a couple days with runny nose, cough and fever, the Jeff got it. His forced him to call in sick one day because he completely lost his voice. Kinda hard to work as a 911 dispatcher without a voice. He sounded pretty horrible the next couple days but made it to work anyway.
Amy is beat, drained, exhausted and pretty much ready for a significant break. We really hope her days away will help. 1 more week!
Keep Allison (and our family) in your prayers. I already know you do, but we believe every little bit helps.
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