to Amy's new family blog page. We havent got all the bugs worked out yet, but it seems to be working pretty well. Jeff will be able to access it and add updates also. Amy is really enjoying the new laptop which gives her the freedom to be more creative. Allison is doing relatively well, having had to fight of a new bout of pneumonia. Until ALL the bugs are worked out, keep checking back here and be sure to add the new link to the Family page. Also Amy and Jeff are both really active on Facebook so thats another good way to keep up on our family goings on.
Friday, August 14, 2009
Wednesday, July 1, 2009
Saturday, June 13, 2009
CAMPING FUN
We had a great time camping. Memories we will have forever. The weather was drizzly and gray, windy and cold. Because of the weather...Allison didn't get to hang out outside and participate in the camping experience as much as we would have liked and she would have liked. Because of this it was neat we could do something that was just about her. As you see in the video we found a place that has these great beach wheel chairs for FREE! She has begun to tolerate being off of the suction for periods of time now. For 30-45 minutes we RAN behind her pushing the chair over all the bumps and hills we could find (Jeff did most of it). If we stopped...she gave us a good holler. Keala either ran behind, rode on her lap or dug in the sand. We had a hoot of a time.
We also took walks around the campground, played dress up, had campfires, grilled steaks, broke into the trailer, listened to music, chased Keala, blew bubbles, oh yeah I did say break into the trailer.
Keala locked Allison in the trailer. We were so freaked out. Do we call the police, break a window, pull the door of the hinges? There were various options, none of which we were comfortable with...BECAUSE WE HAD BORROWED THE TRAILER! Some very nice friends had lent us the trailer and we didn't want to break it. The moral of this=always keep a spare. The end of this for us is...we broke in and will pay for the cost of fixing the lock, everyone was fine and hopefully they let us use it again.
Thursday, June 4, 2009
EXCITEMENT
So...we don't usually post about anything other than medical stuff, but we are going to try and change that!! We are going camping. Yes I said camping. The last time we did that Allison was in my belly, hahahaha. Our good friends Ty and Reba Stoller have wonderful Christian hearts and have loaned us their trailer, with out which we couldn't go. Tomorrow we are picking up a couple of friends who have no idea what the typhoon of Keala is like (muhuahahah) and we are off to Nehalem Bay. Pictures and videos are sure to follow. Love you all...I'm sure.
Saturday, May 30, 2009
Thursday, May 28, 2009
4 more weeks
Allison had her follow up appointment with Dr Harrison today along with an upper G.I. study and esophogram to check on her progress with the NE tube and suction. Good news first. There has been marked improvement in the size of her lower espohagus. Instead of being stretched out to almost 10 times it's normal size, it is now shrunk back down to just about 2x its normal size. Also the normal action of the esophagus, called peristalsis (sp), is now working again. Not perfectly well yet, due to the still increased size, but enough that it is pushing stuff through to the stomach. They told us that it is also not in synch, calling is "disconjugated" meaning that the motion isnt always downward to the stomach, but fluctuates up and down. But, for the most part it's positive improvement!!
Some bad news along with it though, Allison still has the tube and suction in place. The doc wants to leave it for another 4 weeks, just to make sure that the healing continues and giving Allison's esophagus the time to re-train itself to work properly. We are however, going to start turning off the suction for extended periods of time throughout the day. Starting slowly of course, but working our way up to an hour or 2 a couple times a day.
Nursing care ends this week, but the county disabilities program manager has found a nursing service that is willing to train our respite care provider in all of Allison's medical necessities! So, we wont have a nurse overnight, but we will have someone able to come provide Amy with nap time, grocery shopping time, or just alone time. And once Jeff goes back to swing shift in July, can you say a possible DATE NIGHT every once in awhile? Wooo-hooo!
Speaking of... Jeff is on vacation for a week starting this coming Sunday. And then its just 3 more weeks of graveyard. We are entertaining a couple of ideas of what to do over vacation week, and with Allison's improvement, camping is actually at the top of our possibilities list. We've been blessed with friends who offered (read demanded) that we use their trailer at least once this summer. This may be our best opportunity to do so.
Amy's heart issues are still being monitored pretty closely, she wore another halter monitor that recorded her activity for 36 hours. As soon as we get that back to them, the Dr's will be taking a look at those results and geting back to us on how everything looked. They also adjusted her pacemaker a little bit and she seems to be improved.
Keala is still recovering from her HFMD outbreak. It was soooo horrible. She had blisters literally from head to toes. The ones in her mouth are much better, allowing her to eat again without pain, but the ones on her feet are still pretty bad. Should be just another couple days before she's all done with this mess.
Thanks for all your continued prayers. We know for a fact that they are the reason behind the positives. Now we just need to keep weathering the negatives and continue to learn from them and grow in spite of them.
Some bad news along with it though, Allison still has the tube and suction in place. The doc wants to leave it for another 4 weeks, just to make sure that the healing continues and giving Allison's esophagus the time to re-train itself to work properly. We are however, going to start turning off the suction for extended periods of time throughout the day. Starting slowly of course, but working our way up to an hour or 2 a couple times a day.
Nursing care ends this week, but the county disabilities program manager has found a nursing service that is willing to train our respite care provider in all of Allison's medical necessities! So, we wont have a nurse overnight, but we will have someone able to come provide Amy with nap time, grocery shopping time, or just alone time. And once Jeff goes back to swing shift in July, can you say a possible DATE NIGHT every once in awhile? Wooo-hooo!
Speaking of... Jeff is on vacation for a week starting this coming Sunday. And then its just 3 more weeks of graveyard. We are entertaining a couple of ideas of what to do over vacation week, and with Allison's improvement, camping is actually at the top of our possibilities list. We've been blessed with friends who offered (read demanded) that we use their trailer at least once this summer. This may be our best opportunity to do so.
Amy's heart issues are still being monitored pretty closely, she wore another halter monitor that recorded her activity for 36 hours. As soon as we get that back to them, the Dr's will be taking a look at those results and geting back to us on how everything looked. They also adjusted her pacemaker a little bit and she seems to be improved.
Keala is still recovering from her HFMD outbreak. It was soooo horrible. She had blisters literally from head to toes. The ones in her mouth are much better, allowing her to eat again without pain, but the ones on her feet are still pretty bad. Should be just another couple days before she's all done with this mess.
Thanks for all your continued prayers. We know for a fact that they are the reason behind the positives. Now we just need to keep weathering the negatives and continue to learn from them and grow in spite of them.
Saturday, May 23, 2009
Long Awaited Update!
WOW ALL.
So sorry we've not updated and posted for so long. We've had an incredibly hectic, busy, crazy in and out of the hospital 40 days. So here's the short version...
Good news first. We had a really good experience on Mothers Day. The girls were dedicated at Church on the Hill. Because of Allisons health, we considered postponing it, but left in up to God and Allison. She woke up that morning in a really good mood and lasted through the very short, sweet and to the point ceremony. She really enjoyed being back at church. It was also the first time she'd been out of the house besides hospital and dr's visits. Within about 5 minutes of it being over, she made it clear that she wanted to go home. Keala was her normal rambunctious self thru the whole thing but we wouldnt have it any other way.
On the other side of the coin, Allison has been in and out of the hospital a couple times since our last post. The latest was last week for a 3 day stay due to a fever and a bowel impaction. They were able to take care of the bowel problem but the fever remained unexplained. All of the blood cultures came back negative (good) but that left us without an answer (bad). Then we get home and the next day, both girls have sores in their mouths. Cause? Hand, foot and mouth disease. Hence Allisons now explainable fever. Thats the first indicator of this disease, usually 1-2 days in advance of the blisters. This little virus usually tends to affect only kids between 1 and 4 yo. Which is the reason Keala ended up getting the worst of this one. She's still really uncomfortable. Shes got blisters on her hands, feet, bottom and inside her mouth. Allison has a couple in her mouth and thats it.
We are barely surviving Jeffs rotation on graveyard. No longer will this be a chosen shift. We have realized that it is absolutely impossible for us to work as a family team when dad is either asleep or grumpy. Only 5 more weeks though! And 1 of those is vacation.
Thanks for checking in, and thanks for all the prayers.
So sorry we've not updated and posted for so long. We've had an incredibly hectic, busy, crazy in and out of the hospital 40 days. So here's the short version...
Good news first. We had a really good experience on Mothers Day. The girls were dedicated at Church on the Hill. Because of Allisons health, we considered postponing it, but left in up to God and Allison. She woke up that morning in a really good mood and lasted through the very short, sweet and to the point ceremony. She really enjoyed being back at church. It was also the first time she'd been out of the house besides hospital and dr's visits. Within about 5 minutes of it being over, she made it clear that she wanted to go home. Keala was her normal rambunctious self thru the whole thing but we wouldnt have it any other way.
On the other side of the coin, Allison has been in and out of the hospital a couple times since our last post. The latest was last week for a 3 day stay due to a fever and a bowel impaction. They were able to take care of the bowel problem but the fever remained unexplained. All of the blood cultures came back negative (good) but that left us without an answer (bad). Then we get home and the next day, both girls have sores in their mouths. Cause? Hand, foot and mouth disease. Hence Allisons now explainable fever. Thats the first indicator of this disease, usually 1-2 days in advance of the blisters. This little virus usually tends to affect only kids between 1 and 4 yo. Which is the reason Keala ended up getting the worst of this one. She's still really uncomfortable. Shes got blisters on her hands, feet, bottom and inside her mouth. Allison has a couple in her mouth and thats it.
We are barely surviving Jeffs rotation on graveyard. No longer will this be a chosen shift. We have realized that it is absolutely impossible for us to work as a family team when dad is either asleep or grumpy. Only 5 more weeks though! And 1 of those is vacation.
Thanks for checking in, and thanks for all the prayers.
Monday, April 13, 2009
HOME AGAIN !
Great News! Allison is home again! We brought her home Saturday afternoon. As soon as we put her up in her wheelchair to leave the hospital, she started squealing and giggling. She wore herself out in about 20 minutes and slept all the way home. Over the final 4-5 days that we were in the hospital, she had been really uncomfortable and every night at/around bedtime, she got really cranky and fussy. The first night home, she didnt complain at all and had a huge smile on her face as Amy put her in her own bed for the first time in 2 weeks. She was very relaxed and went right to sleep. She really acts like she missed being home and Keala is ecstatic that "sissy" is home again.
The doctors ended up deciding to not perform any surgery at this time in regards to the hernia that we still believe she has. The surgeon actually ended up telling us that he doesn't believe she has a hernia, but if she doesnt, then where did all the bleeding come from and what was on the xray from the ER that caused the docs there to tell us there was a hernia? Things that make you say hmmmmmmmmmmm. Also, after weeks of arguing back and forth with the surgeon, he FINALLY admitted that the Nissen was wrapped too tightly all along, and has caused her esophagus to stretch out from all the secretions pooling at the nissen site, and now resembles a chemistry beaker. To allow it to heal itself and hopefully shrink back down to normal, they have decided to try to keep her secretions from pooling at the bottom by constant suction of the secretions.
She has an NG tube placed in her nose that travels into her lower esophagus, and hooked up to contant low volume suction. The idea is that by not alllowing the secretions to pool, the esophagus "should" heal itself in approximately 6 weeks. She has also come home with a PICC line in case she gets any type of bug, they can start IV meds or antibiotics, or if they need to get any blood woork done etc... That means ANY fever and we go directly to the ER for blood cultures to make sure she doesnt have an infection. It also means weekly trips to the doc for dressing changes, since it needs to be done in a sterile environment. So, yet another 6 weeks of waiting and watching and, hopefully, nursing care and respite care. We have already had 1 scare, She had a low grade fever at home Sunday night, and Amy took her to the ER for the blood work. While they were waiting to be seen, Amy had the nurse check her temp and the fever was GONE ! So they came home, and will check in with our primary care doc first thing in the morning. Hopefully, this will not be an indicator of things to come.
More to come soon.
The doctors ended up deciding to not perform any surgery at this time in regards to the hernia that we still believe she has. The surgeon actually ended up telling us that he doesn't believe she has a hernia, but if she doesnt, then where did all the bleeding come from and what was on the xray from the ER that caused the docs there to tell us there was a hernia? Things that make you say hmmmmmmmmmmm. Also, after weeks of arguing back and forth with the surgeon, he FINALLY admitted that the Nissen was wrapped too tightly all along, and has caused her esophagus to stretch out from all the secretions pooling at the nissen site, and now resembles a chemistry beaker. To allow it to heal itself and hopefully shrink back down to normal, they have decided to try to keep her secretions from pooling at the bottom by constant suction of the secretions.
She has an NG tube placed in her nose that travels into her lower esophagus, and hooked up to contant low volume suction. The idea is that by not alllowing the secretions to pool, the esophagus "should" heal itself in approximately 6 weeks. She has also come home with a PICC line in case she gets any type of bug, they can start IV meds or antibiotics, or if they need to get any blood woork done etc... That means ANY fever and we go directly to the ER for blood cultures to make sure she doesnt have an infection. It also means weekly trips to the doc for dressing changes, since it needs to be done in a sterile environment. So, yet another 6 weeks of waiting and watching and, hopefully, nursing care and respite care. We have already had 1 scare, She had a low grade fever at home Sunday night, and Amy took her to the ER for the blood work. While they were waiting to be seen, Amy had the nurse check her temp and the fever was GONE ! So they came home, and will check in with our primary care doc first thing in the morning. Hopefully, this will not be an indicator of things to come.
More to come soon.
Tuesday, April 7, 2009
How do you break an esophagus?
For fear of another negative blog post (my form of venting and giving all of you a glimpse into the window of my family and soul) I will explain how it is that you can break an esophagus!
It starts with A doctor who is full of himself and is erring on the side of conservancy, telling us to wait it out, "her one way valve (nissen) that allows her to swallow things down and not throw up is swollen and it will subside". The purpose of a nissen is to avoid aspiration. All during this swelling Allison would try to swallow her saliva and it would just sit on top of that nissen, stackup and then she would gag and cough it up. After 12 WEEKS of waiting when typically it takes 6 weeks, he decided it was too tight instead of swollen. So now all of that pooling has caused her esophagus to stretch out to hold all the saliva...thus broken. Her esophagus won't push things down through the nissen which is now open.
So, again...we wait for a test to decide what to do next. It seems so complicated, intertwined, connected, vicious circle, and oh so exhausting!
Allison is in good spirits...we have walked in the sunshine, read books and have had frequent pop ins from hospital friends. She is however, missing watch Sesame Street with her Sissy, Sissy snuggles, sleeping in her own bed, and the food at home is better. I miss all of those too. Oh and my husband...he is never to be forgotten. He is the wind in my sails.
Amy
Oh did I say I think it is all the Doctor's fault
It starts with A doctor who is full of himself and is erring on the side of conservancy, telling us to wait it out, "her one way valve (nissen) that allows her to swallow things down and not throw up is swollen and it will subside". The purpose of a nissen is to avoid aspiration. All during this swelling Allison would try to swallow her saliva and it would just sit on top of that nissen, stackup and then she would gag and cough it up. After 12 WEEKS of waiting when typically it takes 6 weeks, he decided it was too tight instead of swollen. So now all of that pooling has caused her esophagus to stretch out to hold all the saliva...thus broken. Her esophagus won't push things down through the nissen which is now open.
So, again...we wait for a test to decide what to do next. It seems so complicated, intertwined, connected, vicious circle, and oh so exhausting!
Allison is in good spirits...we have walked in the sunshine, read books and have had frequent pop ins from hospital friends. She is however, missing watch Sesame Street with her Sissy, Sissy snuggles, sleeping in her own bed, and the food at home is better. I miss all of those too. Oh and my husband...he is never to be forgotten. He is the wind in my sails.
Amy
Oh did I say I think it is all the Doctor's fault
Sunday, April 5, 2009
LOSING
Let me think of all the things I things I/we seem to be losing or losing at:
- the battle
- sanity
- sleep
- weight (Allison's and Mine)
- time
- a precious childhood
- friends
- family
- dry eyes
- my mind
I/we also seem to be gaining
- weight
- friends
- adopted family
- prescriptions
- health issues
- bags (under our eyes)
- worries
- messy house
- Dr bills
- teary eyes
Let me explain something about how we feel about the damn frequency of all of this to everyone. We don't get used to this!! We just pick up our shit and deal with it because we love our kids and each other. It does some times feel that our friends and family become more numb each time there is a health incident because they feel that we/they have been there done that. Well, it is complicated and with a different set of circumstances each time. Each time Allison goes through stuff it gets more complicated and risky for her and we have to search for better/long term solutions. We also have to face that each time she gets sick she gets closer and closer to medically fragile.
The stress is taking a toll on both Jeff and I and as Keala gets older and smarter (the latter of which seems to happen faster than we can keep up) she is more affected. She doesn't like that sissy is in the 'owie house'. She is worried who will be with her when she wakes up. Jeff's vacation ends on Tuesday Keala will get stuck with a whoever, wherever 'substitute parent'. What part of that is hard? That Keala has to have a substitute, but for Allison there is no substitute.
Tomorrow, more tests...Mom and Dad trade...Keala goes somewhere to play (joyfully I hope). One of will post the results as soon as possible.
Love,
Amy
Thursday, April 2, 2009
frustration
Things that make you say... GGGRRRRR
First of all, Allison is doing really well this afternoon and appears to be feeling really good. Today, however, was really frustrating from a couple of different perspectives. #1 in our conversations with the surgeon on Tuesday, he left us with the impression that he was going to take care of quite a few procedures today (5 to be exact) and that we would be presented with quite a bit of information about her hernia and what steps we would need to take to correct/repair that and also about her ability to swallow and process her secretions. That did not take place. Instead, they only took care of 2 procedures and were not able to give us any info about the hernia at all. #2 we were told that the other procedures would not take place until Monday. That means 3 days of just sitting around waiting for answers to questions that we feel we could have and should have gotten today. For Allison, it's not a really huge deal cause she's pretty happy wherever she's at and probably feels great about all the attention she gets here, but from a family perspective, it just leaves us fractured for that much longer. She will most likely be here through the end of NEXT week, if not even longer. Amy has left to go home and spend time with Keala and also to go to an appointment with her cardiologist tomorrow. We are praying for a positive outcome from that visit, though we arent sure what to really expect. She has been having quite a bit of irregular activity lately and we're pretty concerned about it. She will most likely stay home for the next couple of days and then come back up sometime Sunday to switch places again. Jeff would love to have phone calls and/or visits over the next couple days. It would definitely help break up the monotony of the hospital schedule. The phone # in the room is 503-418-5124 and we are on the 10th floor. 10N rm 23.
Along with prayers for Allison and Amy, we'd like to extend this out to another family up here. The Tromblas, Derek (a YCSO Deputy) and his wife Danita, have been up here for 14 days now with their 3 yo son Kaiden (think I spelled that right). He had a real bad pnuemonia that collapsed his lung and they have had a very difficult run of it including multiple surgeries to keep the fluid build up from pressing on his heart. Please include their family in your prayers as well.
First of all, Allison is doing really well this afternoon and appears to be feeling really good. Today, however, was really frustrating from a couple of different perspectives. #1 in our conversations with the surgeon on Tuesday, he left us with the impression that he was going to take care of quite a few procedures today (5 to be exact) and that we would be presented with quite a bit of information about her hernia and what steps we would need to take to correct/repair that and also about her ability to swallow and process her secretions. That did not take place. Instead, they only took care of 2 procedures and were not able to give us any info about the hernia at all. #2 we were told that the other procedures would not take place until Monday. That means 3 days of just sitting around waiting for answers to questions that we feel we could have and should have gotten today. For Allison, it's not a really huge deal cause she's pretty happy wherever she's at and probably feels great about all the attention she gets here, but from a family perspective, it just leaves us fractured for that much longer. She will most likely be here through the end of NEXT week, if not even longer. Amy has left to go home and spend time with Keala and also to go to an appointment with her cardiologist tomorrow. We are praying for a positive outcome from that visit, though we arent sure what to really expect. She has been having quite a bit of irregular activity lately and we're pretty concerned about it. She will most likely stay home for the next couple of days and then come back up sometime Sunday to switch places again. Jeff would love to have phone calls and/or visits over the next couple days. It would definitely help break up the monotony of the hospital schedule. The phone # in the room is 503-418-5124 and we are on the 10th floor. 10N rm 23.
Along with prayers for Allison and Amy, we'd like to extend this out to another family up here. The Tromblas, Derek (a YCSO Deputy) and his wife Danita, have been up here for 14 days now with their 3 yo son Kaiden (think I spelled that right). He had a real bad pnuemonia that collapsed his lung and they have had a very difficult run of it including multiple surgeries to keep the fluid build up from pressing on his heart. Please include their family in your prayers as well.
Wednesday, April 1, 2009
Where do I begin?
Well...we have moved to the 10th floor, what we like to call our home here at OHSU. Most of the nurses know Allison's care needs well and me by first name. One of the night nurses is a man and is considered Allison's "boyfriend"...LOL. He totally flirts with her, it is so cute :) *SIGH* It allows me to breathe and sleep some. On the other hand, there isn't a doctor on hand on the floor at all times like in the ICU. We get only "childlike" residents. In fact, the two that came in today to answer my questions about her procedure tomorrow are brand new to the surgeons service TODAY. They came in thinking they were going to teach me something HAHAHAHA...ding dongs. I taught them something and I believe her beet red face was from utter embarassment. I am an educated woman and caring mother, don't mess with me...just help me help Allison.
So, tomorrow just some epxploration so that we can figure out how to help her.
I will post tomorrow...love to all who love us, Amy
So, tomorrow just some epxploration so that we can figure out how to help her.
I will post tomorrow...love to all who love us, Amy
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.
Saturday, February 28, 2009
Still having issues...
Hey all,
Its now 8 weeks post operation and the 6 week window that we were originally given by the surgical staff has long since passed. They told us that her swelling should be decreased enough by 6 weeks post-op that we would no longer need to suction her and she should be back to "normal" from a surgical standpoint. That did not happen. Here we are now 2 weeks later and we still have nurses at the house, still having to suction her every hour and a half or so and still having some pretty severe digestive issues on top of it. We really dont want to entertain the thought of another surgical procedure to "figure out the problem", but that seems to be looming on the horizon. We will be scheduling some tests this coming week that will hopefully give us enough answers that we'll be able to avoid that. Allison simply does not recover well from surgery, Sadly, we are very well aware of that fact.
This whole situation has really taken it's toll on us as a family. Alot of our plans that we had for Keala's development have been simply dropped by the wayside. Neither one of us seems to have the energy and patience required to successfully deal with a little one that is so smart and full of boundless energy. We are having real difficulties being able to keep our frustration, fear and anger hidden away. There is a filter that great parents have that allows them to keep those emotions tucked away. Sadly, ours really isnt working very well. We are amazed by her all the time, but she is so desperate for our attention that she is already acting out and doing things that she knows are wrong, just to get our attention away from Allison for a minute. We have battled to retain our ability to tag team as parents, but sleep deprivation is a killer. Amy is not sleeping well, and is exhausted all the time. She was also starting to have some heart issues pop up because of the amount of coffee she was drinking (and the chocolate she was eating). The docs told her to cut down on those and that has made her even more tired. Jeff hasn't really slept well since Allison was born. Not an exagerration, simple fact. The fact that Allison does not sleep through the night has been a constant since she started havindg seizures at 9 months old(normally the age when little ones start to sleep through the night). So, long story short, sleep deprivation is wreaking havoc on our family. We appear so strong to people, we get those comments all the time, but it is really just survival. As Pastor Kerri told us a few weeks ago, theres a real need for us to be able to flourish as a family and not just survive. When you get to a point that the light at the end of the tunnel starts resembling the glow of an unattended campfire at 5am rather than the blaze of a bonfire, you know it's time to start digging a little bit deeper.
Our question is, How much do we have left? I fear we're dragging the bottom of the barrel.
Its now 8 weeks post operation and the 6 week window that we were originally given by the surgical staff has long since passed. They told us that her swelling should be decreased enough by 6 weeks post-op that we would no longer need to suction her and she should be back to "normal" from a surgical standpoint. That did not happen. Here we are now 2 weeks later and we still have nurses at the house, still having to suction her every hour and a half or so and still having some pretty severe digestive issues on top of it. We really dont want to entertain the thought of another surgical procedure to "figure out the problem", but that seems to be looming on the horizon. We will be scheduling some tests this coming week that will hopefully give us enough answers that we'll be able to avoid that. Allison simply does not recover well from surgery, Sadly, we are very well aware of that fact.
This whole situation has really taken it's toll on us as a family. Alot of our plans that we had for Keala's development have been simply dropped by the wayside. Neither one of us seems to have the energy and patience required to successfully deal with a little one that is so smart and full of boundless energy. We are having real difficulties being able to keep our frustration, fear and anger hidden away. There is a filter that great parents have that allows them to keep those emotions tucked away. Sadly, ours really isnt working very well. We are amazed by her all the time, but she is so desperate for our attention that she is already acting out and doing things that she knows are wrong, just to get our attention away from Allison for a minute. We have battled to retain our ability to tag team as parents, but sleep deprivation is a killer. Amy is not sleeping well, and is exhausted all the time. She was also starting to have some heart issues pop up because of the amount of coffee she was drinking (and the chocolate she was eating). The docs told her to cut down on those and that has made her even more tired. Jeff hasn't really slept well since Allison was born. Not an exagerration, simple fact. The fact that Allison does not sleep through the night has been a constant since she started havindg seizures at 9 months old(normally the age when little ones start to sleep through the night). So, long story short, sleep deprivation is wreaking havoc on our family. We appear so strong to people, we get those comments all the time, but it is really just survival. As Pastor Kerri told us a few weeks ago, theres a real need for us to be able to flourish as a family and not just survive. When you get to a point that the light at the end of the tunnel starts resembling the glow of an unattended campfire at 5am rather than the blaze of a bonfire, you know it's time to start digging a little bit deeper.
Our question is, How much do we have left? I fear we're dragging the bottom of the barrel.
Friday, February 13, 2009
I'm banging my head against the wall!!!
So after the second visit to the Dr's office today and running into him at the grocery store, where I might add he was more than willing to walk me to my car and have a clinical conversation with me...oh and the third day in his office this week!!! I feel like I am staring at a brick wall. Allison is still having low grade fevers, which have been persistent since before we left the hospital post-operative. She is still having bouts of unexplained crying. Also, some her blood work is 'funny'. She is still being suctioned WAY TOO MUCH for this far out from surgery and the damn surgeon wants us to give a 'couple more weeks'. I'd like him to 'couple more weeks' it at my house. He also made an asinine medication suggestion like he's talking to a rookie mom. This medication is to aid in the speed of digestion. She is not having a problem with that...she just can't swallow you idiot...or poop. Oh yeah she's constipated really bad. I have been working on her from both ends. And to top it off she was crying in the office today and the pediatrician could finally see what kind of crying it was 'whew' and he thinks it's something GI related which could be something totally new and different and above and beyond the current pneumonia she is recovering from. AAAAAAAAA Can you hear me screaming?
And those are only the health problems with her. The anxiety is bad with me, so I take pills, they make me sleepy, so I drink coffee, I then have palpitations and arrhythmia's, less coffee, more headaches, less motivated, dirtier house, more anxiety...see the circle here? I'm not convinced that less coffee is really the total answer I can only describe that I don't feel well and sometimes strange.
Poor Keala feels so cooped up. The purpose of that is to keep out the germs and since we are all taking turns being sick I'm afraid Mommy is not very much fun and kind of cooped up and cranky too. I want so much for this to be over I can taste it. And I hope Jeff doesn't read this, because him knowing how I am really doing and feeling is source of stress.
What I dream of is that he could stay home more and that the phrase "I NEED my Mommy, I NEED my Daddy", wasn't said so often. I also wish not everyone in the doctor's office knew us by face and name (although that can work in our favor sometimes). The other thing I wish for is my Mommy. :(
And those are only the health problems with her. The anxiety is bad with me, so I take pills, they make me sleepy, so I drink coffee, I then have palpitations and arrhythmia's, less coffee, more headaches, less motivated, dirtier house, more anxiety...see the circle here? I'm not convinced that less coffee is really the total answer I can only describe that I don't feel well and sometimes strange.
Poor Keala feels so cooped up. The purpose of that is to keep out the germs and since we are all taking turns being sick I'm afraid Mommy is not very much fun and kind of cooped up and cranky too. I want so much for this to be over I can taste it. And I hope Jeff doesn't read this, because him knowing how I am really doing and feeling is source of stress.
What I dream of is that he could stay home more and that the phrase "I NEED my Mommy, I NEED my Daddy", wasn't said so often. I also wish not everyone in the doctor's office knew us by face and name (although that can work in our favor sometimes). The other thing I wish for is my Mommy. :(
Sunday, February 8, 2009
Back to Reality
Hey all...
Not quite sure how the get this one started but I think I'll start with the good news.
First, Jeff's aunt Louanne flew in from Phoenix (Sun City) and was here for 2 weeks to help us with Keala and to help keep our sanity. It worked !! Keala LOVED her auntie and spent quite a bit of time with her. They became fast friends. Second, The nurses have been wonderful with Allison and have helped in the sanity department also. Third, MOPS has done a wonderful thing with their dinner outreach program. It made things so much easier for Amy and Louanne. Thank you, Thank you, Thank you!
Ok, now to the other news. Allison has really not been feeling well the last week or so and we were forced to take her to Mac ER on Saturday because she had been pretty much inconsolable for almost 2 days. We were really concerned that there was a problem with her hernia site, but as it turns out, she's just really backed up on the bottom end of things, and has a pretty bad case of pneumonia in her left lung. Not really good, but definitely not worst case scenario! So, she's had 2 doses of IV antibiotics for the pneumonia and will get another one at the Dr's office tomorrow, and we've taken the necessary steps to alleviate the bottom end issue (no specifics required!) Second, Louanne's time with us has ended. :{ She flew out this morning, run ragged, tore down, beat up and with a pretty bad cold thanks to chasing our little typhoon (Keala, who has been fighting off croup for the past 2 weeks). We also sent her home with a boatload of gratitude, many thanks and a whole lot of love! Third, the nursing help we've had also runs out today. Kind of a wake up call that we get to come back to reality.
For those of you that we've talked to (and also those we haven't) who want to help but don't really know what to, call and talk to Amy over the next week or so, especially after 3pm. Just giving her an adult to talk to when Jeff's not home is a pretty big help. And if she's at a point where she needs something specific, she'll be able to let you know then also.
Thanks again for all the good thoughts and prayers.
Not quite sure how the get this one started but I think I'll start with the good news.
First, Jeff's aunt Louanne flew in from Phoenix (Sun City) and was here for 2 weeks to help us with Keala and to help keep our sanity. It worked !! Keala LOVED her auntie and spent quite a bit of time with her. They became fast friends. Second, The nurses have been wonderful with Allison and have helped in the sanity department also. Third, MOPS has done a wonderful thing with their dinner outreach program. It made things so much easier for Amy and Louanne. Thank you, Thank you, Thank you!
Ok, now to the other news. Allison has really not been feeling well the last week or so and we were forced to take her to Mac ER on Saturday because she had been pretty much inconsolable for almost 2 days. We were really concerned that there was a problem with her hernia site, but as it turns out, she's just really backed up on the bottom end of things, and has a pretty bad case of pneumonia in her left lung. Not really good, but definitely not worst case scenario! So, she's had 2 doses of IV antibiotics for the pneumonia and will get another one at the Dr's office tomorrow, and we've taken the necessary steps to alleviate the bottom end issue (no specifics required!) Second, Louanne's time with us has ended. :{ She flew out this morning, run ragged, tore down, beat up and with a pretty bad cold thanks to chasing our little typhoon (Keala, who has been fighting off croup for the past 2 weeks). We also sent her home with a boatload of gratitude, many thanks and a whole lot of love! Third, the nursing help we've had also runs out today. Kind of a wake up call that we get to come back to reality.
For those of you that we've talked to (and also those we haven't) who want to help but don't really know what to, call and talk to Amy over the next week or so, especially after 3pm. Just giving her an adult to talk to when Jeff's not home is a pretty big help. And if she's at a point where she needs something specific, she'll be able to let you know then also.
Thanks again for all the good thoughts and prayers.
Saturday, January 31, 2009
Home
We've had Allison home now since Thursday night and things seem to be steadily improving. She is really enjoying being in her own bed at night (so is Amy). She has had a few periods of time where she seems to be in a fair amount of pain but we are not able to pin down the cause. Aunt Louanne is definite blessing! She has been a huge help with Keala and also helping us keep ahead of the housework. Another body and another pair of hands and legs to keep Keala occupied would have been enough in itself, but she is also very willing to help with the housework which is an additional bonus. The nurses will be here thru the 8th which ironically enough is the same day Louanne is scheduled to fly out. With the Allison is progressing, that should work out really well.
Prayers for continued improvement and restful sleep for all.
Prayers for continued improvement and restful sleep for all.
Wednesday, January 28, 2009
sorry I haven't purged lately
So, It's Wednesday night and we have been here 4 times since right before Christmas, 5 days this time, on only one floor this time (not including the Emergency Room), had 2 attending doctors, been consulted by 3 teams of doctors, been taken care of by 4 great nurses, 1 bad nurse, 1 that likes to fight with the doctors (he's the best one yet), and he is officially Allison's boyfriend :)
I was cranky the first couple of days...tired of playing the hospital game. I had to resolve in my own head and heart that some questions aren't answered...sometimes I win and sometimes I don't. All that really matters is that Allison comes first and I don't necessarily care about their game they make play. That would be the sit and wait, talk to them and then them, and then wait some more. You have to learn their language in order to play their game. I swear there should be a PND (Parent's Nursing Degree...I'm half-way there). I'm a good MOM and a smart one too!!!
Tomorrow...we should be reaching our goal of being at her normal feed rate for 24 hours and tolerating it. So no hiccups, problems, or complications till then means we go home tomorrow evening. Bottom line is...who knows where the bleeding in her stomach came from but it stopped. I have a theory and I think that all the gagging from the secretions contributed to it. I'm probably right, my instincts are usually right...the doctors thought it was a good theory. We are trying not to force the suctioning so much.
I am hoping now that she tolerates her feeds and we will go home to a couple more weeks of nursing care and Auntie Louanne, Daddy, Yaya and our own beds :)
I am feeling good about going home even though we don't necessarily have answers because if we have to come back we have support to do that and we have the nurse. I hope we have visitors soon after we come home!
Amy
I was cranky the first couple of days...tired of playing the hospital game. I had to resolve in my own head and heart that some questions aren't answered...sometimes I win and sometimes I don't. All that really matters is that Allison comes first and I don't necessarily care about their game they make play. That would be the sit and wait, talk to them and then them, and then wait some more. You have to learn their language in order to play their game. I swear there should be a PND (Parent's Nursing Degree...I'm half-way there). I'm a good MOM and a smart one too!!!
Tomorrow...we should be reaching our goal of being at her normal feed rate for 24 hours and tolerating it. So no hiccups, problems, or complications till then means we go home tomorrow evening. Bottom line is...who knows where the bleeding in her stomach came from but it stopped. I have a theory and I think that all the gagging from the secretions contributed to it. I'm probably right, my instincts are usually right...the doctors thought it was a good theory. We are trying not to force the suctioning so much.
I am hoping now that she tolerates her feeds and we will go home to a couple more weeks of nursing care and Auntie Louanne, Daddy, Yaya and our own beds :)
I am feeling good about going home even though we don't necessarily have answers because if we have to come back we have support to do that and we have the nurse. I hope we have visitors soon after we come home!
Amy
Monday, January 26, 2009
Update
Well, Allison had a rough night last night and is crying quite a bit this morning. We are thinking that she's probably pretty hungry. She hasn't had anything in her tummy since sat night. They are still trying to figure out where the bleeding is coming from. The word is, she will be there for at least another few days. Keala is feeling pretty good this morning. The bark is pretty much gone this morning after a good night sleep with the humidifier going. No fevers at all, which is good. Doc gave her a steroid to take if she starts getting worse, but seems to be no need for it yet.
On a new subject, answered prayers and angels. Aunt Louanne talked to us yesterday and has offered to fly in from Arizona and stay at our house for a week or two to help with Keala so Jeff can go to work and stay on to help once Amy and Allison get home. What a Godsend! We will pick her up Tuesday morning and stop by to see Amy and Allison on our way back. Thank you really isn't enough to cover something like that. But thank you!
On a new subject, answered prayers and angels. Aunt Louanne talked to us yesterday and has offered to fly in from Arizona and stay at our house for a week or two to help with Keala so Jeff can go to work and stay on to help once Amy and Allison get home. What a Godsend! We will pick her up Tuesday morning and stop by to see Amy and Allison on our way back. Thank you really isn't enough to cover something like that. But thank you!
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