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.
Saturday, January 31, 2009
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
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