Life is going pretty well with us. Jonathan is staying very busy with work. Ian & Nathaniel are doing their respective schooling without any complaints. Kya is getting healthier every day and should be heading home really soon!
Nathaniel is fitting into our strange family really well and we are just loving him more and more every day! I'm really glad we listened to the promptings of the spirit and took the chance and said yes to having him stay with us. It has been one of the greatest blessings we have received. Just reminds me that we should be more open to those things that scare us, because let me say I was freaked out about having to deal with the teenage stuff, but it has been pretty amazing and if I don't screw Nathaniel up too bad, maybe Ian will have a fighting chance!
Ian is growing like a weed and is currently in that gangley awkward stage before puberty kicks in full gear. He still acts like a kid, but his preteen attitudes are rearing their ugly head and occasionally we have to lay down the law and remind him who is the boss! I'm not so excited about this stage but I'm still learning how to make it all work. I'm sure by the time I figure this stage out we will be well on our way into the next one.
Kya is growing like a weed too. I often wonder at which point it will stop, but she shows no signs of it any time soon. I am praying to God that we don't have to deal with the preteen stuff with Kya EVER! Maybe I'll luck out on that one.
Jonathan has been working hard. Sometimes he is a contractor and sometimes he is a mechanic, it all depends on the day. I don't mind as long as we still have an income which keeps us fed and warm! He of course is stressing out, but I can't help him chill out unless he wants too so I guess we'll just wait for him to figure out that stressing about it does not make it better!
I'm staying busy with the kids mostly. I avoid my household chores whenever possible and I read every chance I get. Other than that my life is the same, just with one extra kid!
Saturday, November 21, 2009
Thursday, November 12, 2009
Kya's Swine Flu Update - Day 17
WE ARE GOING HOME...... NOT! As a matter of fact the social worker came in today to bring me new meal passes for the cafeteria and she said "I can't believe your still here! Do you know how long your going to be here?" after I replied with a shrug, she jokingly says, "well we have a fabulous Thanksgiving dinner planned!" That got me laughing! It would not be the first Thanksgiving we have spent in the hospital although we are optimistically hoping to have her home by then.
Kya has made a small improvement today. Her attitude is a LOT better! She had some issues with her O2 Sats but cleared them up slowly throughout the day. Most of the problem we are having is because she is moving all the phlegm in her chest and it causes yours oxygen exchange to go down, because the air is not getting to the little sacs in the lungs. The more she coughs the more phlegm you can remove and the clearer the lungs get, eventually improving your overall health and then you get to go home!
So, now that your anatomy lesson is done for the day, I'll tell you what I have been up to.
I spend every day here sitting in a 10x15 room listening to constant humming, beeping, alarming, swooshing and a not so subtle hissing. As you might imagine this can be rather over-stimulating! I'm going to share a well guarded secret about how to stay sane when you are a care-giver for someone with a chronic illness AND yes, I do know that sanity is a relative term!
There are several phases to life at the hospital and for MOST "Frequent Flyer" parents like myself it kinda breaks down like this.
Stage 1: The first few days of a hospitalization you pretty much are just worried about your child and you don't watch TV or anything because it's just not that important and everything is so fragile at that moment. Your only focus is your child and you spend a lot of time speculating how bad this illness is going to be. You spend quiet moments wondering if this is "The ONE" that's going to be the last illness they ever have and you mentally and spiritually prepare for what could potentially be the worst experience of your life.
Stage 2: After things have settled and the child is stabilized things shift and it's now OK to turn on the TV and watch the news, read a book, watch a movie, do a crossword puzzle or even spend some time online Face booking or plotting out the spring garden! Most of the time the kids are to fragile still to socialize much and stimulation is NOT good. So It's a quiet existence.
Stage 3: We then move into the next phase where you totally feel like a schmuck and SOOOO lazy! You've done nothing productive for a week or two and you find yourself rearranging the hospital room, finding excuses to walk all the way across the hospital for just a little exercise, Picking up after all 4 of the kitchens & doing mindless little chores at the Ronald McDonald House (RMH) and practically daydreaming about a really large load of laundry to fold!
I am officially in Stage 3. In an attempt to offset the feelings of slothfulness I have been doing several hours of Records Indexing for the Family Search website. It's amazing how fast the time flies. I come in at 9am get some good snuggles in with Kya, and then I put myself to work! I'm able to drowned out the noises with my ear buds and listen to conference talks, audio scriptures, and more talk radio than should be legally allowed! I set myself up right next to her bed and she can watch me all day (since all she really wants is me in the room!). Before I know it its 7pm and time to head back to RMH. The only downside to this is that I think I've put on another couple pounds since coming here! Colleen's going to have to kick my butt into shape when I get home!
I've been spending my down time at the RMH working on my Christmas presents for the family. I brought out my sewing machine and all the necessary items and have been successful in my endeavor to put my time to good use. The staff knows me pretty well and they find it pretty entertaining. I'm notorious for asking to use items that no body ever asks for (like the iron!) The nice part is that they know I will return everything I borrow, so are very willing to help me out. AND yes theft is a major problem in the house!!
That's it for today, check back in a couple days.
Laura
Kya has made a small improvement today. Her attitude is a LOT better! She had some issues with her O2 Sats but cleared them up slowly throughout the day. Most of the problem we are having is because she is moving all the phlegm in her chest and it causes yours oxygen exchange to go down, because the air is not getting to the little sacs in the lungs. The more she coughs the more phlegm you can remove and the clearer the lungs get, eventually improving your overall health and then you get to go home!
So, now that your anatomy lesson is done for the day, I'll tell you what I have been up to.
I spend every day here sitting in a 10x15 room listening to constant humming, beeping, alarming, swooshing and a not so subtle hissing. As you might imagine this can be rather over-stimulating! I'm going to share a well guarded secret about how to stay sane when you are a care-giver for someone with a chronic illness AND yes, I do know that sanity is a relative term!
There are several phases to life at the hospital and for MOST "Frequent Flyer" parents like myself it kinda breaks down like this.
Stage 1: The first few days of a hospitalization you pretty much are just worried about your child and you don't watch TV or anything because it's just not that important and everything is so fragile at that moment. Your only focus is your child and you spend a lot of time speculating how bad this illness is going to be. You spend quiet moments wondering if this is "The ONE" that's going to be the last illness they ever have and you mentally and spiritually prepare for what could potentially be the worst experience of your life.
Stage 2: After things have settled and the child is stabilized things shift and it's now OK to turn on the TV and watch the news, read a book, watch a movie, do a crossword puzzle or even spend some time online Face booking or plotting out the spring garden! Most of the time the kids are to fragile still to socialize much and stimulation is NOT good. So It's a quiet existence.
Stage 3: We then move into the next phase where you totally feel like a schmuck and SOOOO lazy! You've done nothing productive for a week or two and you find yourself rearranging the hospital room, finding excuses to walk all the way across the hospital for just a little exercise, Picking up after all 4 of the kitchens & doing mindless little chores at the Ronald McDonald House (RMH) and practically daydreaming about a really large load of laundry to fold!
I am officially in Stage 3. In an attempt to offset the feelings of slothfulness I have been doing several hours of Records Indexing for the Family Search website. It's amazing how fast the time flies. I come in at 9am get some good snuggles in with Kya, and then I put myself to work! I'm able to drowned out the noises with my ear buds and listen to conference talks, audio scriptures, and more talk radio than should be legally allowed! I set myself up right next to her bed and she can watch me all day (since all she really wants is me in the room!). Before I know it its 7pm and time to head back to RMH. The only downside to this is that I think I've put on another couple pounds since coming here! Colleen's going to have to kick my butt into shape when I get home!
I've been spending my down time at the RMH working on my Christmas presents for the family. I brought out my sewing machine and all the necessary items and have been successful in my endeavor to put my time to good use. The staff knows me pretty well and they find it pretty entertaining. I'm notorious for asking to use items that no body ever asks for (like the iron!) The nice part is that they know I will return everything I borrow, so are very willing to help me out. AND yes theft is a major problem in the house!!
That's it for today, check back in a couple days.
Laura
Tuesday, November 10, 2009
Kya's Swine Flu Update - Day 15
I feel like we are kinda back-tracking here. Kya was very happy and energetic for the last 2 days and then yesterday she began to be very whinny and just OFF? Today she is miserable, whinny and crying a lot. I asked the nurse to turn up her oxygen because she was just sitting at like 86% oxygen saturation (our range should be above 92%) and now she is just resting somewhat, but occasionally burst out into tears. I think I will have them give her some Tylenol for discomfort, cause obviously something is bothering her!
I don't know as I have any good news. That's why my updates are slow to come. She is taking a long time to get better and is making VERY slow progress. In terms of comparison she looks 100% better than 8 days ago. just not any better from 4 days ago. So that is how things stand for now.
We have not seen the doctors today yet, so do not have an "official" update from them, but they pretty much listen to what I say anyways and we go with that. She is still coughing a lot of goop up and getting it cleared from her airway so that is a positive sign. the more she clears the healthier her lungs should get. Cross your fingers :)
I think the hardest part I have with being in the hospital is not being able to just do everything myself. I'm not shy about taking care of Kya's needs, but I don't know how to work these machines so I have to rely on the staff to take care of things for me and I AM NOT PATIENT! I still reposition her, suction, change diapers and I'll crawl into bed with her to snuggle, but it's not the same as at home and that sucks! I'm starting to really miss hanging out on the couch and having her draped over my lap while we snuggle for hours, since this is how she likes to be comforted when she does not feel good. It's much harder to "fix" her in this environment.
So it is today. I guess I'm a little whinny too!
Laura
I don't know as I have any good news. That's why my updates are slow to come. She is taking a long time to get better and is making VERY slow progress. In terms of comparison she looks 100% better than 8 days ago. just not any better from 4 days ago. So that is how things stand for now.
We have not seen the doctors today yet, so do not have an "official" update from them, but they pretty much listen to what I say anyways and we go with that. She is still coughing a lot of goop up and getting it cleared from her airway so that is a positive sign. the more she clears the healthier her lungs should get. Cross your fingers :)
I think the hardest part I have with being in the hospital is not being able to just do everything myself. I'm not shy about taking care of Kya's needs, but I don't know how to work these machines so I have to rely on the staff to take care of things for me and I AM NOT PATIENT! I still reposition her, suction, change diapers and I'll crawl into bed with her to snuggle, but it's not the same as at home and that sucks! I'm starting to really miss hanging out on the couch and having her draped over my lap while we snuggle for hours, since this is how she likes to be comforted when she does not feel good. It's much harder to "fix" her in this environment.
So it is today. I guess I'm a little whinny too!
Laura
Saturday, November 7, 2009
Kya's Swine Flu Update - Day 12
I know I am not very good at posting every day, but not sure what to say when nothing has changed???
A Little history lesson might be appropriate. Kya has been having pneumonia several times a year since she was born and with each illness comes more lung damage. So after 10 years of too many hospitalizations to list and about 25 illnesses that required intubation and a ventilator to breathe, she has a little bit of a problem... this amounts to a lot of lung damage! Five years ago we asked the doctors how much damage they thought she might have in her lungs... their answer was 60%! That would leave her 40% of her total lung capacity, but what is not known to most people is that she only has ONE lung that works which leaves us with a grand total of 20%, so needless to say we have never asked again. "Guess my odds" is not a game we play.
We came to a realization today that we are finally seeing the results of all that damage. She is not recuperating like we have always seen in the past. Normally Kya gets better just fine and comes home a couple of days following the worst of her symptoms. The docs here have said she is made of Kryptonite because she can take out the man of steal! It has been miracle after miracle with her in how quickly she gets better. The docs have expressed their surprise repeatedly saying things like "that's just Kya, she never read the manual" or "only Kya could pull this off!" So we have always considered ourselves lucky to have received such tender mercies from the Lord.
I guess I write this not to show concern over her current illness, because she IS getting better. Her personality is back to normal, she is laughing and playing as best she can and she is alert and happy like her normal self. I have NO doubts that she will come out of this just fine and come home to us sometime in the next few weeks. We are just patiently waiting.
I suppose I'm writing this to express my knowledge that our life with her has been a gift. One which she has freely given to us. Although we've endured some trials and tribulations, I would not trade them for anything in this world and I certainly would not choose to live my life with her any differently if I were given the choice to do it over again (other than maybe spending more time with her!).
One day the Lord will see fit to let her come home to Him and it may sound coarse to some, but I look forward to that day! Simply because I KNOW it is her choice and when she goes she will be ready and so will we. We have loved our little girl as best we can and will continue to do so until that day comes.
Thanks for all your prayers for her, she cannot express it, but I know she is grateful and is receiving blessings because of your faith!
All My love,
Laura
A Little history lesson might be appropriate. Kya has been having pneumonia several times a year since she was born and with each illness comes more lung damage. So after 10 years of too many hospitalizations to list and about 25 illnesses that required intubation and a ventilator to breathe, she has a little bit of a problem... this amounts to a lot of lung damage! Five years ago we asked the doctors how much damage they thought she might have in her lungs... their answer was 60%! That would leave her 40% of her total lung capacity, but what is not known to most people is that she only has ONE lung that works which leaves us with a grand total of 20%, so needless to say we have never asked again. "Guess my odds" is not a game we play.
We came to a realization today that we are finally seeing the results of all that damage. She is not recuperating like we have always seen in the past. Normally Kya gets better just fine and comes home a couple of days following the worst of her symptoms. The docs here have said she is made of Kryptonite because she can take out the man of steal! It has been miracle after miracle with her in how quickly she gets better. The docs have expressed their surprise repeatedly saying things like "that's just Kya, she never read the manual" or "only Kya could pull this off!" So we have always considered ourselves lucky to have received such tender mercies from the Lord.
I guess I write this not to show concern over her current illness, because she IS getting better. Her personality is back to normal, she is laughing and playing as best she can and she is alert and happy like her normal self. I have NO doubts that she will come out of this just fine and come home to us sometime in the next few weeks. We are just patiently waiting.
I suppose I'm writing this to express my knowledge that our life with her has been a gift. One which she has freely given to us. Although we've endured some trials and tribulations, I would not trade them for anything in this world and I certainly would not choose to live my life with her any differently if I were given the choice to do it over again (other than maybe spending more time with her!).
One day the Lord will see fit to let her come home to Him and it may sound coarse to some, but I look forward to that day! Simply because I KNOW it is her choice and when she goes she will be ready and so will we. We have loved our little girl as best we can and will continue to do so until that day comes.
Thanks for all your prayers for her, she cannot express it, but I know she is grateful and is receiving blessings because of your faith!
All My love,
Laura
Wednesday, November 4, 2009
Kya's Swine Flu Update - Days 7 & 8
The docs feel that we have gotten over the worst of the illness, but she is still requiring a lot of assistance to breathe. They've tried repeatedly to reduce the Bi-Pap settings and/or take her off the assistance of it all together and have been unable to keep her off for very long. After they turn the Bi-Pap off she immediately begins to hyperventilate and drop her O2 sats, so she absolutely needs the extra push in getting air into her lungs. She is coughing a lot more now, which is good since coughing is required for clearing the lungs of all the infection. So hopefully a few more days and we'll see some further improvement.
It seems that we have a long recovery ahead of us. Kya's attitude & energy level are much improved but she is still relatively quiet and docile, especially for her! She is absolutely fascinated with the shiny mylar balloons that the primary sent her (THANK YOU so much Sister Estep!) and has played with them for HOURS! She is just quietly grabbing the ribbon, yanking on it to make the balloons dance, waits for them to stop moving and pulls the ribbons again. They are very entertaining to her!
Jonathan & the boys came out to see us last night. Jonathan went to see Kya and the boys and I went SHOPPING! Before we went shopping we first stopped by Robert & Angela Heerdinks house, where Angela made us a fabulous salmon dinner because she is AWESOME and a great friend who just knew I needed homemade food...YEAH! Then off to WinCo! After a much needed trip to stock up on our pantry items at home, we went to the Fabric store where I was quickly reminded why you do not bring BOYS to the FABRIC STORE!!!! All in all it was a great evening and it made me miss being home with my kids horribly :(
I can't wait to be home with everyone again!
It seems that we have a long recovery ahead of us. Kya's attitude & energy level are much improved but she is still relatively quiet and docile, especially for her! She is absolutely fascinated with the shiny mylar balloons that the primary sent her (THANK YOU so much Sister Estep!) and has played with them for HOURS! She is just quietly grabbing the ribbon, yanking on it to make the balloons dance, waits for them to stop moving and pulls the ribbons again. They are very entertaining to her!
Jonathan & the boys came out to see us last night. Jonathan went to see Kya and the boys and I went SHOPPING! Before we went shopping we first stopped by Robert & Angela Heerdinks house, where Angela made us a fabulous salmon dinner because she is AWESOME and a great friend who just knew I needed homemade food...YEAH! Then off to WinCo! After a much needed trip to stock up on our pantry items at home, we went to the Fabric store where I was quickly reminded why you do not bring BOYS to the FABRIC STORE!!!! All in all it was a great evening and it made me miss being home with my kids horribly :(
I can't wait to be home with everyone again!
Monday, November 2, 2009
Kya's Swine Flu Update - Days 5 & 6
Kya looks and acts a lot better, but was unsuccessful getting off the Bi-Pap machine Sunday night. They decided to push her a bit and take her off the Bi-Pap and she did ok for a while, but quickly began breathing really fast again. So they had to put her back on to assist her in getting full breaths of air and calming down.
They have weaned her from a lot of her medicines and have taken out her extra IV accesses (they had gone bad) and did not replace them in preparation for her getting well. Her blood gases have looked good and have not changed, so that is always a good sign of recovery.
We will know we are on the mend when she is getting her feeds again, but for now they are holding them, just in case she has to be intubated.
Jonathan & I were able to get a room at the Ronald McDonald House tonight, so it will be a lot easier to not have to move all our stuff every day. Nathaniel starts going to seminary again today and I think he's excited about that... but then again he is a teenager so WHO KNOWS! Ian is glad because now he gets to stay with us overnight in Spokane and that makes him happy. He's had a hard time with us being gone, because the hospital has a strict "NO VISITORS UNDER THE AGE OF 18" policy in force right now, as they are trying to reduce the spreading of this bug. So poor Ian has been "ABANDONED!!!" at least that's how he feels. At least he likes us still, I'm sure that will change in a few years!
They have weaned her from a lot of her medicines and have taken out her extra IV accesses (they had gone bad) and did not replace them in preparation for her getting well. Her blood gases have looked good and have not changed, so that is always a good sign of recovery.
We will know we are on the mend when she is getting her feeds again, but for now they are holding them, just in case she has to be intubated.
Jonathan & I were able to get a room at the Ronald McDonald House tonight, so it will be a lot easier to not have to move all our stuff every day. Nathaniel starts going to seminary again today and I think he's excited about that... but then again he is a teenager so WHO KNOWS! Ian is glad because now he gets to stay with us overnight in Spokane and that makes him happy. He's had a hard time with us being gone, because the hospital has a strict "NO VISITORS UNDER THE AGE OF 18" policy in force right now, as they are trying to reduce the spreading of this bug. So poor Ian has been "ABANDONED!!!" at least that's how he feels. At least he likes us still, I'm sure that will change in a few years!
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