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!
Sunday, January 25, 2009
Déjà Vu
Well, here we go again. Allison is back at Doernbecher since 11pm last night. She has another GI bleed. Jeff came home after making sure they were going to be taken care of. They were pretty busy at the ER due to the multiple shooting downtown Portland last night. OHSU got 4of the trauma patients within half an hour of us getting there. So, service was a bit delayed.
Then Keala wakes up this morning with the croup. Jeff gets to take her to PMC to talk to Dr Harbour in a couple hours to get looked at and get some medicine. Sound familiar? That's cause we did this same thing last year while Allison was in the hospital. So, we'll be asking and getting the answers to, a bunch of questions today. Pray for rest as neither Amy or Jeff got much last night, and also knowledgable dr's. Will post more once we find out more.
Then Keala wakes up this morning with the croup. Jeff gets to take her to PMC to talk to Dr Harbour in a couple hours to get looked at and get some medicine. Sound familiar? That's cause we did this same thing last year while Allison was in the hospital. So, we'll be asking and getting the answers to, a bunch of questions today. Pray for rest as neither Amy or Jeff got much last night, and also knowledgable dr's. Will post more once we find out more.
Saturday, January 24, 2009
Balance
It can be hard when you feel pulled in so many directions to find balance in your life for everything, everyone, and all of your emotions. Every time my hands are full with Allison, Keala of course acts out in order to gain my attention. It is impossible to pull her out of trouble when I am suctioning Allison though. Every time the phone rings Keala thinks it is her beloved Grammy Sue calling to talk to her and only her...or I have to suction Allison right then. Unfortunately I am required to field lots of important phone calls regarding supply deliveries, insurance matters, doctors appointments (hers and mine), or just checking in with doctors.
Yes there has been a nurse here while Jeff is at work, but Allison hasn't been having the most restful of nights and Jeff is up with her most so I can stay sane during the day. So, that means in the mornings he sleeps in while I count the minutes until the nurse comes. Yesterday was the one day the home health company had difficulty with staffing so Jeff called and we had a family day and took turns napping. That is one reprieve, Keala still naps and she sleeps well.
The other balance I could talk about is just that it never feels like there is enough of me to go around to the house. The dishes are stacking up as well as the trash, the litter box is full (poor KiKi) and the laundry might be clean but I don't know where to find it. I haven't cooked in I don't know how long (thanks to MOPS) but there are still a mountain of dishes and there is a ton of food in my fridge that I don't want to go to waste, but I don't have much of an appetite.
Balancing my emotions...that's a whole another rant. I'm angry, sad, guilty, and just plain irritated I can't do it all. Now...I know that's not really possible but I want to be able to. Sometimes I feel like I should have a place to point those emotions but they just come back at me. I'm also angry that my family is spread all over, because they are so emotionally supportive having been through this, so to speak with me. I was a sick child. My mom is to busy to come help, my sister has a huge family and a full time job, my brother lives in Hawaii and has a very important job...my Dad has a ranch he runs by himself (he even calls himself 'not much of a kid person') despite that he is going to come any way to be another set of hands. Why, because I can't suction, feed Keala, change diapers, and go pee all at the same time...before I lose it. Speaking of emotions I think/know I am crying right now.
Some of the MOPS moms have been so great to call and offer to take Keala to play dates in the morning...if you are reading this keep them coming...it's hard to ask. (pride and emotions get in the way).
Jeff...here's what I can say about him...he is the most wonderful teammate, husband, father, caregiver, compassionate, thoughtful, partner I could have ever asked for. God knew what he was doing when he molded him for me and when he brought him to me on a silver platter. Ok it wasn't a silver platter it was more like a light shone down on him while he opened his mouth and inserted his foot, HAHAHA.
Amy (I think it's still me)
Yes there has been a nurse here while Jeff is at work, but Allison hasn't been having the most restful of nights and Jeff is up with her most so I can stay sane during the day. So, that means in the mornings he sleeps in while I count the minutes until the nurse comes. Yesterday was the one day the home health company had difficulty with staffing so Jeff called and we had a family day and took turns napping. That is one reprieve, Keala still naps and she sleeps well.
The other balance I could talk about is just that it never feels like there is enough of me to go around to the house. The dishes are stacking up as well as the trash, the litter box is full (poor KiKi) and the laundry might be clean but I don't know where to find it. I haven't cooked in I don't know how long (thanks to MOPS) but there are still a mountain of dishes and there is a ton of food in my fridge that I don't want to go to waste, but I don't have much of an appetite.
Balancing my emotions...that's a whole another rant. I'm angry, sad, guilty, and just plain irritated I can't do it all. Now...I know that's not really possible but I want to be able to. Sometimes I feel like I should have a place to point those emotions but they just come back at me. I'm also angry that my family is spread all over, because they are so emotionally supportive having been through this, so to speak with me. I was a sick child. My mom is to busy to come help, my sister has a huge family and a full time job, my brother lives in Hawaii and has a very important job...my Dad has a ranch he runs by himself (he even calls himself 'not much of a kid person') despite that he is going to come any way to be another set of hands. Why, because I can't suction, feed Keala, change diapers, and go pee all at the same time...before I lose it. Speaking of emotions I think/know I am crying right now.
Some of the MOPS moms have been so great to call and offer to take Keala to play dates in the morning...if you are reading this keep them coming...it's hard to ask. (pride and emotions get in the way).
Jeff...here's what I can say about him...he is the most wonderful teammate, husband, father, caregiver, compassionate, thoughtful, partner I could have ever asked for. God knew what he was doing when he molded him for me and when he brought him to me on a silver platter. Ok it wasn't a silver platter it was more like a light shone down on him while he opened his mouth and inserted his foot, HAHAHA.
Amy (I think it's still me)
Sunday, January 18, 2009
Weekends
We are back at home as of Saturday afternoon with answered prayers!! The insurance authorized 3 extra weeks of nursing care. 7 days a week, 8 hrs a day. Praise God! That puts us right at the 6 week mark and the time when the swelling from surgery should be down enough that we aren't having to suction Allison any more. We are still workin on some play dates for Keala, thanks go out to those who have offered already, (Chris, Steve and Annie, Danielle, Justin and Jace, and Ross and Karen) we will be calling early in the week to get things rollin.
So, the nursing care has been spectacular so far, Molly actually almost beat us here Saturday afternoon. We got home from the hospital about 2:45 and she was pulling up as we rolled in. Sounds like we will be dealing with a very small number of nurses rotating thru, which is nice because they will really get a chance to know Allison and kind of how our family operates. Unlike last year, the nurses get to really interact with Allison and Amy, because last year the nurses were here 10p-6a. This year they are here 3p-11p while Jeff is at work, which allows Amy to go to bed when Keala does (around 8p) and then Jeff gets to sleep around 1am. Allison is actually doing relatively well sleeping thru the night, (well, til 5am or so) and Amy gets up with her and gets her going while Jeff gets a few more hours of sleep. On Saturday and Sunday nights, Jeff is at home too so with the nurse here, we can put Keala down to sleep and actually spend some alone time together, on a weekend, either watching a movie in our bedroom, or in the case of last night, letting Keala stay the night at Grammy Sue's and we actually left the house together for a couple hours of "just us" time. That was desperately necessary. We hadn't spent any alone time together in a couple of months. We'd kinda forgotten what a date felt like.
Thank you's go out to MOPS. They have been supplying us with dinner every couple of nights. That has really been a welcome relief for Amy. And to Lacey and Jonathon too. Also to a couple angels from church that showed up and took our Christmas tree away and took down the Christmas lights. Just a few less things for us to worry about. Thank you to all of you who take the time to read these little ramblings and pray for us. Believe me, we give thanks for you every day and take time to pray for all of you too. You've been a blessing to our family and we are forever grateful.
So, the nursing care has been spectacular so far, Molly actually almost beat us here Saturday afternoon. We got home from the hospital about 2:45 and she was pulling up as we rolled in. Sounds like we will be dealing with a very small number of nurses rotating thru, which is nice because they will really get a chance to know Allison and kind of how our family operates. Unlike last year, the nurses get to really interact with Allison and Amy, because last year the nurses were here 10p-6a. This year they are here 3p-11p while Jeff is at work, which allows Amy to go to bed when Keala does (around 8p) and then Jeff gets to sleep around 1am. Allison is actually doing relatively well sleeping thru the night, (well, til 5am or so) and Amy gets up with her and gets her going while Jeff gets a few more hours of sleep. On Saturday and Sunday nights, Jeff is at home too so with the nurse here, we can put Keala down to sleep and actually spend some alone time together, on a weekend, either watching a movie in our bedroom, or in the case of last night, letting Keala stay the night at Grammy Sue's and we actually left the house together for a couple hours of "just us" time. That was desperately necessary. We hadn't spent any alone time together in a couple of months. We'd kinda forgotten what a date felt like.
Thank you's go out to MOPS. They have been supplying us with dinner every couple of nights. That has really been a welcome relief for Amy. And to Lacey and Jonathon too. Also to a couple angels from church that showed up and took our Christmas tree away and took down the Christmas lights. Just a few less things for us to worry about. Thank you to all of you who take the time to read these little ramblings and pray for us. Believe me, we give thanks for you every day and take time to pray for all of you too. You've been a blessing to our family and we are forever grateful.
Friday, January 16, 2009
repeat offender
You could call us a repeat offender, it might be deja vu, or we just went to our home away from home. I went to bed last nigh around nine and her temp was 99.1. At 10:30 the nurse was waking me up telling me she was in respiratory distress and her temp was 102.6. So off to the Emergency room we flew with the suction machine close by, hooked up to the pulse/oxygen saturation monitor and also with oxygen mask strapped to her face. Jeff drove while I suctioned, comforted, monitored, and mothered. By 4:30 we had finally been put into a room on the 10th floor. She slept a little more--I'm not really sure if I ever slept more than 30 minutes straight. Coffee is the order of the morning. We are waiting for the Docs, she is a little more comfortable but my anxiety is climbing as I'm sure Jeff's is. I'm sure Keala is pleased as punch, as her day will be split between Discovery Zone and the great Grammy Sue.
Wednesday, January 14, 2009
Hanging on (by a thread)
Well, how to start...where to begin...
By the grace of God we are still at home and surviving the task of being nurse, doctor, parent, advocate, spouse, sibling, children, employee and friend all at the same time. Hypervigilance can really take a toll on person after awhile. Add sleep deprivation to it and you get a really dangerous mix. Then add fear, frustration and FED UP to that and you've got the recipe to create Amy and Jeff right now. Kinda scary if you really stop and think about it. We are really only hanging on by a thread at this point. Thankfully that thread is attached to a huge web spun by God specifically designed to hold us up. I can only imagine that from afar all our tears would look like early morning dew drops on that web.
Wow, after wiping away some of those tears, back to an update...
Allison is still not doing very well. Lots of crying in the mornings, and lots of suctioning all day. She is sooo tired of the suction machine! So far, in 4 days, we've suctioned the equivalent of two 2 liter bottles from Allison. All of that, she would normally just swallow and digest. But since she can't swallow it due to the swelling around her esophagus, it just builds up in her chest until she coughs it up or we force her to cough it up. Amy and Jeff are in charge of not allowing her to choke on or inhale any of that overnight and during the day until Jeff leaves for work at 2:30 and the nurse gets here approx 1/2 hour later. The nurse stays here until Jeff gets home at around 11pm. As of right now, we have not been approved for any nursing care after Friday. Our main prayer request is that the insurance company approves another 2 weeks of nursing care. The average recovery time for this surgery is 6 weeks. Thats when the swelling will go down enough for Allison to be able to swallow all those secretions. Right now, we are sitting at 3 weeks. If we can get approved for another 2 weeks, we will be a lot closer to full recovery. Our 2nd prayer request is, we are on the lookout for play dates for Keala for next week and the week after. Just a couple of days so she can get out of the house for awhile. She is so eager to learn new things and go new places and she gets bored around our house very easily, especially when our attention is so focused on Allison.
Thank you Lord for making that thread a really strong one. And for maing the web that it's attached to even stronger.
By the grace of God we are still at home and surviving the task of being nurse, doctor, parent, advocate, spouse, sibling, children, employee and friend all at the same time. Hypervigilance can really take a toll on person after awhile. Add sleep deprivation to it and you get a really dangerous mix. Then add fear, frustration and FED UP to that and you've got the recipe to create Amy and Jeff right now. Kinda scary if you really stop and think about it. We are really only hanging on by a thread at this point. Thankfully that thread is attached to a huge web spun by God specifically designed to hold us up. I can only imagine that from afar all our tears would look like early morning dew drops on that web.
Wow, after wiping away some of those tears, back to an update...
Allison is still not doing very well. Lots of crying in the mornings, and lots of suctioning all day. She is sooo tired of the suction machine! So far, in 4 days, we've suctioned the equivalent of two 2 liter bottles from Allison. All of that, she would normally just swallow and digest. But since she can't swallow it due to the swelling around her esophagus, it just builds up in her chest until she coughs it up or we force her to cough it up. Amy and Jeff are in charge of not allowing her to choke on or inhale any of that overnight and during the day until Jeff leaves for work at 2:30 and the nurse gets here approx 1/2 hour later. The nurse stays here until Jeff gets home at around 11pm. As of right now, we have not been approved for any nursing care after Friday. Our main prayer request is that the insurance company approves another 2 weeks of nursing care. The average recovery time for this surgery is 6 weeks. Thats when the swelling will go down enough for Allison to be able to swallow all those secretions. Right now, we are sitting at 3 weeks. If we can get approved for another 2 weeks, we will be a lot closer to full recovery. Our 2nd prayer request is, we are on the lookout for play dates for Keala for next week and the week after. Just a couple of days so she can get out of the house for awhile. She is so eager to learn new things and go new places and she gets bored around our house very easily, especially when our attention is so focused on Allison.
Thank you Lord for making that thread a really strong one. And for maing the web that it's attached to even stronger.
Sunday, January 11, 2009
Rough around the edges
Well it's day #2 at home and we're getting used to the idea that we're actually home. Allison actually slept really well overnight which means so did Amy. We never really have any problems with Keala sleeping. She's in bed around 8p and up around 7a. One would imagine there might be less stress around here than at the hospital. In some ways thats true, but in other ways, we dont have professionals right outside our door to consult about low grade fever, lack of urine output, excessive suctioning, etc... We are thankful to be home, but once again, we really didn't feel Allison was ready to be here. We have Dr's appointments tomorrow and the nursing service also starts tomorrow at 3p and will be here while Jeff is at work. Many thanks to MOPS for helping us with dinner. We hear it may be continuing over the next few days also.
Saturday, January 10, 2009
Exhustion Sets In
I don't think I realized how tired I was because I was running on adrenaline and there was always something we were waiting for at the hospital...the next visitor...phone call...assesment...mealtime...medication...staffing change...person that walked in the door...update to give...complaint to be lodged...decision to be made...etc. By our calculations we have suctioned her at least two dozen times and gotten about 16 oz. of fluid out of her today. She has been intermittently happy and dozed quite a bit.
Keala did decide that Mommy shouldn't hold Sissy any more while Daddy was sleeping and actually tried to pull her out my arms. There just isn't enough of me to go around. No really, Keala has been pretty great.
Allison didn't have the most restful night. Jeff said he got up with her 4 or 5 times suctioned her and rolled her over. I really hope this doesn't last for six weeks like last year, Jeff I both will end up having break downs. So far we are 2 and a half weeks post-op. I feel like we are kind of barely holding on in category of sleep, but maybe that's just because we just got home. The church is really taking care of us. Not only are they are praying for us, they are feeding us, loving us and I just had an offer for house cleaning. They are a real family. Sometimes I don't know what we would do with out them. We are really well loved.
Amy
Keala did decide that Mommy shouldn't hold Sissy any more while Daddy was sleeping and actually tried to pull her out my arms. There just isn't enough of me to go around. No really, Keala has been pretty great.
Allison didn't have the most restful night. Jeff said he got up with her 4 or 5 times suctioned her and rolled her over. I really hope this doesn't last for six weeks like last year, Jeff I both will end up having break downs. So far we are 2 and a half weeks post-op. I feel like we are kind of barely holding on in category of sleep, but maybe that's just because we just got home. The church is really taking care of us. Not only are they are praying for us, they are feeding us, loving us and I just had an offer for house cleaning. They are a real family. Sometimes I don't know what we would do with out them. We are really well loved.
Amy
Friday, January 9, 2009
Sent Home A.M.A
In the world of Fire/EMS, A.M.A normally stands for Against Medical Advice. In the Yates world today, It means Against Moms Advice. The doctors refused to take no for an answer from Amy and discharged us from the hospital today. Allison is still needing to be suctioned approximately every 30 minutes, is not up to normal on her feeds, and had a low grade fever last night and this morning. She is also still medically dehydrated. Yet we were discharged from a Childrens Hospital.
Things that make you go hmmmmmmmm.....
The good news.... We are HOME and Allison appears very pleased and happy to be here, showing us her newly toothless grin quite a bit. : } Keala is tickled pink that sissy and mommy are home. Also the insurance company has approved us for an in home nurse to be here while Jeff is at work for at least the first week. That will start on Monday. So for the weekend, it's up to us. They will be reviewing her progress and reassessing her after that first week and they may approve more if it is still necessary. Last year with this same surgery, it took 6 weeks for the swelling to go down enough that she didnt need suctioning. So we'll wait and see.
Will post more later today
Things that make you go hmmmmmmmm.....
The good news.... We are HOME and Allison appears very pleased and happy to be here, showing us her newly toothless grin quite a bit. : } Keala is tickled pink that sissy and mommy are home. Also the insurance company has approved us for an in home nurse to be here while Jeff is at work for at least the first week. That will start on Monday. So for the weekend, it's up to us. They will be reviewing her progress and reassessing her after that first week and they may approve more if it is still necessary. Last year with this same surgery, it took 6 weeks for the swelling to go down enough that she didnt need suctioning. So we'll wait and see.
Will post more later today
Thursday, January 8, 2009
Give the World a Raspberry
At the end of today it feel like all I have left in me is a raspberry "Phlllllllth". I woke an hour an a half after rounds usually happen to find Auntie Hannah with a Frappaciuno in hand and a smile on her face so the coffee and the extra hour and a half of sleep balanced out not getting to connect with the doctor. My concerns are focused on hydration now. Much of her fluids are coming out of her face in form of her secretions that are being suctioned because she is not able to swallow them to her tummy because of the surgery site swelling.
We did have BM success overnight now we need more pee! It's always got something to do with some sort of bodily fluid with us! My Mom always accused me of loving bathroom humor, now I can't get away from it.
We did get word today that the insurance will approve a week of home nursing care. Let me help you understand something, this swelling is most likely going to take 6 weeks to resolve. This colossal mistake was made by the Nurse Practitioner here who failed to have a conversation with me about what we went through last time before she wrote the letter of medical necessity to the insurance. Then, when I asked to speak to her about the issue--she literally passed the buck and ran out the door and would not speak to me.
All I have to say is this can be rectified and it damn well better be. And I will tell you why...We cannot and will not do this by our selves for 4 weeks. I'm talking about constant suctioning, medicating, turning her in bed, documenting ins and outs, comforting her, mother and fathering her, chasing Keala, taking her to the Dr, keeping up the house, go to work, hibernate enough to keep her from getting sick....I could keep ranting. We need nursing help until the suctioning needs have subsided. So, that is my fight tomorrow.
I plan to take God and prescription drugs to this fight!!! Pray for me.
We did have BM success overnight now we need more pee! It's always got something to do with some sort of bodily fluid with us! My Mom always accused me of loving bathroom humor, now I can't get away from it.
We did get word today that the insurance will approve a week of home nursing care. Let me help you understand something, this swelling is most likely going to take 6 weeks to resolve. This colossal mistake was made by the Nurse Practitioner here who failed to have a conversation with me about what we went through last time before she wrote the letter of medical necessity to the insurance. Then, when I asked to speak to her about the issue--she literally passed the buck and ran out the door and would not speak to me.
All I have to say is this can be rectified and it damn well better be. And I will tell you why...We cannot and will not do this by our selves for 4 weeks. I'm talking about constant suctioning, medicating, turning her in bed, documenting ins and outs, comforting her, mother and fathering her, chasing Keala, taking her to the Dr, keeping up the house, go to work, hibernate enough to keep her from getting sick....I could keep ranting. We need nursing help until the suctioning needs have subsided. So, that is my fight tomorrow.
I plan to take God and prescription drugs to this fight!!! Pray for me.
Wednesday, January 7, 2009
Whirlwind Visit
Keala and Grammy Sue came to visit today... What a whirlwind!! :) Keala wouldn't let mommy put her down for the first 15 minutes they were here and then crawled right into bed with Allison and snuggled and kissed and patted her and talked to her. Later, when mommy took her out of the room for a bit to play with her in the play room, 2 or 3 times, right in the middle of a sentence, Keala would stop and say "yaya (thats what she calls herself) "yaya sissy!" and take off running down the hall back to Allisons room. She also noticed a couple other babies on the hall and wanted to go take care of them and snuggle them too. She's just sooo adorable! Amy really enjoyed seeing Sue also. What a nice treat. They were able to spend a couple hours and have dinner with Amy and then took off for home. Sue said Keala struggled a little bit with the leaving part and talked about mommy and sissy all the way home.
Allison is still having some struggles today. She had an xray yesterday that showed she has a a lot of poo to get rid of and is having a lot of troubles doing it. Feeds have been backed off again and Miralax introduced to try and get things movin. It's causing her quite a bit of discomfort. Dr Harrison seems to think that he wants to send her home before the weekend, but as it stands right now, Allison is still on IV fluids and IV meds and is still not getting full feeds and being suctioned on a very regular basis. All of that combined with the constipation says to us, NO WAY ! At the earliest, we're thinking sometime next week, and thats only if we get authorization from the insurance company for some nursing assistance at home. Thank you for all the calls and emails and Facebook posts. We have really appreciated them.
Thank you Lord for all our friends (old, new and newly re-aquainted)
Thank you for continued strength and perserverence.
Thank you for continued health (Amy, Jeff and Keala) and continued progress for Allison.
Thank you for all of your angels at Church on the Hill, without them we would be sinking fast.
Allison is still having some struggles today. She had an xray yesterday that showed she has a a lot of poo to get rid of and is having a lot of troubles doing it. Feeds have been backed off again and Miralax introduced to try and get things movin. It's causing her quite a bit of discomfort. Dr Harrison seems to think that he wants to send her home before the weekend, but as it stands right now, Allison is still on IV fluids and IV meds and is still not getting full feeds and being suctioned on a very regular basis. All of that combined with the constipation says to us, NO WAY ! At the earliest, we're thinking sometime next week, and thats only if we get authorization from the insurance company for some nursing assistance at home. Thank you for all the calls and emails and Facebook posts. We have really appreciated them.
Thank you Lord for all our friends (old, new and newly re-aquainted)
Thank you for continued strength and perserverence.
Thank you for continued health (Amy, Jeff and Keala) and continued progress for Allison.
Thank you for all of your angels at Church on the Hill, without them we would be sinking fast.
Tuesday, January 6, 2009
Tough Day
Two teeth short and one G tube button added, lots of crying and lots of medications...that's how our day went. Oh yeah, and she was on food restriction for her sedation this afternoon while I had a hard time keeping food down.
Tonight the plan is to keep her comfortable. I'm guessing there is pain from needing to have a BM, having two teeth pulled, shoving in the Gtube, and just all around discomfort from all of the gagging and wretching.
Little Sissy and the best Grammy Sue in world are coming tomorrow and Auntie Hannah. Need that like nothing else. Would give up eating tomorrow to get them. One person missing though...Daddy.
Everyone's calls and emails are so nice. If you don't hve the number it is 503-418-5110. It can get busy in here but there can also be horrible periods of nothingness.
Right now I say a prayer for relief for Allison...she is crying so much...I would like the hand of healing and pain relief to come over her. I also say a prayer for all the wonderful friends in Christ we have. To all of you who have blessed us, THANK YOU. Thank God.
Amy
Tonight the plan is to keep her comfortable. I'm guessing there is pain from needing to have a BM, having two teeth pulled, shoving in the Gtube, and just all around discomfort from all of the gagging and wretching.
Little Sissy and the best Grammy Sue in world are coming tomorrow and Auntie Hannah. Need that like nothing else. Would give up eating tomorrow to get them. One person missing though...Daddy.
Everyone's calls and emails are so nice. If you don't hve the number it is 503-418-5110. It can get busy in here but there can also be horrible periods of nothingness.
Right now I say a prayer for relief for Allison...she is crying so much...I would like the hand of healing and pain relief to come over her. I also say a prayer for all the wonderful friends in Christ we have. To all of you who have blessed us, THANK YOU. Thank God.
Amy
Monday, January 5, 2009
Movin up & Stayin the same
So they booted us out of the ICU today:) Good for them we weren't still there when I found out they put too small of a temporary tube in the G-tube site last night. What I mean is the temporary tube came out, so they replaced it with something else until the surgeons could aprove the permanent one being put back in. When they were discussing what to do they looked at me and clearly asked me what size she normally has and I firmly and assuredly anwered their question and they promptly out something in that was 2 sizes too small!! So, when the nurse attempted to place the permanent tube and it so apparently would not go in you can be sure I was not happy.
The result: Sedation in order to dilate the site to make it large enough to replace the permanent tube in hole that was large enough only hours ago thanks to...let me see...wax in someone's ears. Sedation always has risks, I can't go with her to hold her hand, and there will be residual pain in which she will need more ...which we are trying to get off of. BLAH BLAH BLAH.
The up side is she is getting some food and between suctionings she is talking and smiling. She went for a lap in her chair last night and got held by mom today.
The down side is there is no talk of time frame of release. The secretions and suctionings are relentless and I am TIRED. The smiles are keeping me smiling though.
Amy
The result: Sedation in order to dilate the site to make it large enough to replace the permanent tube in hole that was large enough only hours ago thanks to...let me see...wax in someone's ears. Sedation always has risks, I can't go with her to hold her hand, and there will be residual pain in which she will need more ...which we are trying to get off of. BLAH BLAH BLAH.
The up side is she is getting some food and between suctionings she is talking and smiling. She went for a lap in her chair last night and got held by mom today.
The down side is there is no talk of time frame of release. The secretions and suctionings are relentless and I am TIRED. The smiles are keeping me smiling though.
Amy
Sunday, January 4, 2009
Improving !
Amy has been with Allison at the hospital for the past couple days and without computer access in the PICU. She has been working really closely with the docs and nurses there keeping Allison on the right path. She has been resting relatively comfortably and was even making happy noises at Amy last night. The docs decided (after consulting with Amy) to start feeding Allison yesterday and so far there haven't been any negative reactions to that. We will continue to monitor her very closely over the next day or so and start escalating the amount she's getting. After that, we will start making decisions as to when to wean her off the IV fluids and IV pain meds and transition her to meds via g-tube. She has started coughing a lot more, which is good and bad. She's coughing and clearing the junk from her windpipe which is good, but in the process she's risking inhaling the fluids back into her lungs (very bad) and also the more she coughs, the more pain she's in due to the fact that her surgery site is very close to her diaphragm. If all continues as it has been, we will most likely be moved out of the PICU and up to the PACU on the 10th floor. Not sure when that will happen, but it's the next logical step.
Keala has been acting a little under the weather today and spiked a fever earlier this afternoon. We're gonna keep a real close eye on her the next day or so, hoping she doesn't get really sick too. Jeff is off Sunday which is pretty convenient, especially if Keala ends up getting sick. If she doesn't get sick, hopefully we'll be able to get Amy a break Sunday afternoon and let her come home for awhile. Jeff starts swing shift Monday and wont really be able to get back up to the hospital to get Amy a break until Friday night.
Keala has been acting a little under the weather today and spiked a fever earlier this afternoon. We're gonna keep a real close eye on her the next day or so, hoping she doesn't get really sick too. Jeff is off Sunday which is pretty convenient, especially if Keala ends up getting sick. If she doesn't get sick, hopefully we'll be able to get Amy a break Sunday afternoon and let her come home for awhile. Jeff starts swing shift Monday and wont really be able to get back up to the hospital to get Amy a break until Friday night.
Friday, January 2, 2009
Rough night,Restful morning
Allison has been resting comfortably now for about 2 hours. We had a very unrestful night. She never seemed to be in very much pain, just really uncomfortable. Good news to begin the day, they are planning to take her off of the morphine that has been causing her to itch like mad. They are also going to start some fluids thru her gtube to get her tummy working again after over a week of nothing but meds and IV fluids.
Keala is really missing her sister and asks about her constantly. Every time she wakes up (from overnight or just nap time) it's "sissy still by-bye?" And throughout the day it's "wheres sissy?" . She talks to her on the phone every time we call. She got to come visit her in the ICU yesterday, albeit very, very briefly. She climbed right into the bed and snuggled and kissed her. In hindsight, it was easier to deal with Allisons surgeries and hospital stays when it was just the 3 of us. It's really us to have to keep our family splintered in 3-4 different places at a time. Anyway, good news today. We hope that positivity continues.
Keala is really missing her sister and asks about her constantly. Every time she wakes up (from overnight or just nap time) it's "sissy still by-bye?" And throughout the day it's "wheres sissy?" . She talks to her on the phone every time we call. She got to come visit her in the ICU yesterday, albeit very, very briefly. She climbed right into the bed and snuggled and kissed her. In hindsight, it was easier to deal with Allisons surgeries and hospital stays when it was just the 3 of us. It's really us to have to keep our family splintered in 3-4 different places at a time. Anyway, good news today. We hope that positivity continues.
Thursday, January 1, 2009
Back in the ICU
Here's a brief catch up on whats brought us to Doernbecher once again. Allison started having some difficulties a couple weeks ago and we were back and forth to the doctor trying to figure out what was causing the problem. She was bleeding from somewhere in her tummy again so they did a coupple xrays in the ER the week before Christmas and found another hernia in her upper bowel/diaphragm area. Same place as last year. Due to the snowstorm and the Holiday they really didnt have the staff at the hospital to take care of the problem right then and there. They originally sent us home and scheduled surgery for the 8th of Jan. Allison started to not tolerate feedings without extreme pain, so we started her on a calorie infusion IV at Mac Hospital and they transferred us up to Doernbecher on the 29th. Doernbecher was able to reschedule surgery for the 30th. And to make an even longer story short, here we are.
Allison's surgery has caused swelling in the Nissen site again and that is not allowing her saliva or any other secretions to enter her stomac. That causes them to back up into her esophogus and she risks coughing them up and inhaling them. So they put her back in the ICU to be watched continuously and suctioned every 15-30 minutes. She was also on moisturized oxygen that was supposedly helping her breathe easier. The problem was that she was fighting the nasal canula and the mask that was feeding it to her. We ended up taking the mask off for about 15-20 minutes and she was breathing easier without it on. So they have discontinued the oxygen for now and will conitinue to watch that. Amy has gone home for the night with Keala and will come back up tomorrow afternoon and Jeff will go home and nap for a couple hours and then go to work.
Please feel free to call or come visit, We'll be in ICU for another day or 2, then they will re open the 10th floor acute care wing and we'll most likely head there next. The phone number in the room (for now) is 503-346-0114. We arew in rm 14 on the 8th floor pediatric ICU.
Allison's surgery has caused swelling in the Nissen site again and that is not allowing her saliva or any other secretions to enter her stomac. That causes them to back up into her esophogus and she risks coughing them up and inhaling them. So they put her back in the ICU to be watched continuously and suctioned every 15-30 minutes. She was also on moisturized oxygen that was supposedly helping her breathe easier. The problem was that she was fighting the nasal canula and the mask that was feeding it to her. We ended up taking the mask off for about 15-20 minutes and she was breathing easier without it on. So they have discontinued the oxygen for now and will conitinue to watch that. Amy has gone home for the night with Keala and will come back up tomorrow afternoon and Jeff will go home and nap for a couple hours and then go to work.
Please feel free to call or come visit, We'll be in ICU for another day or 2, then they will re open the 10th floor acute care wing and we'll most likely head there next. The phone number in the room (for now) is 503-346-0114. We arew in rm 14 on the 8th floor pediatric ICU.
Subscribe to:
Posts (Atom)
