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
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