Showing posts with label Smidget's Update. Show all posts
Showing posts with label Smidget's Update. Show all posts
Wednesday, 16 December 2009
A Small Success...or Big I Guess :p
I have finally had some small successes after such dirt under our feet. Leigha is finally on the mend in terms of feeling better. She is gaining weight now instead of losing it 12.83 kilos as of Monday, a whopping 28ish pounds!!! Hooray. I now get to focus less on her weight and more on her. Not that she'll let me forget about her anyway my velcro ;)
The tube changeout when great today. We had to wait an hour to see him which was the toughest part since I had to wake Leigha up from her sleep this morning. We were expected at the Stollery at 9am which meant leaving town at 830 at the latest. I had to hit the bank and drop Nathaniel off at school before heading into the city. We were only 15 minutes late but since we ended up waiting for him it wasn't such a big thing. The whole thing took about 10 mintutes total to accomplish the hardest thing being holding her legs still while he deflated the balloon holding the tube in and cut the suture. Yes the suture was still attatched funny enough but amazingly enough the balloon that was holding the tube in....was popped. I guess that explains the incredible amount of pain she has had the past week and a bit and the lack of bubble movement these past few days. The tube was nasty too, very gunky at the tip so I am glad we get to start with a new one.
We had a quick coffee with Laura and caught up a bit with her about how her day was going...chaotic as usual but when isn't a CCICU crazy I ask of you? ( that's cardiac care ICU in case you care :p) Then off to Spruce Grove and Peggy's place to get my photo's...amazing :o They turned out WAY, WAY better than I thought they would. I can't wait to show them off....to a select few of course :p
Then I get home and one of the nasty credit card companies calls and I finally, after about 2 months of talking, get them to lower my intrest rate to a managable one so maybe we can finally get this thing paid down and gone. I think that this has been an awsome day by far.
Tonight is a pizza night. I don't feel like cooking, it's 4 o'clock already and I have no milk. I don't want to go back out with 3 kids and Leigha hasn't napped so that would be asking for problems.
Crossing my fingers now that I can make some headway on Graham's Christmas gift...or part of it tonight. But I ma hearing Nathaniel complaining upstaris, most likely "Ryan hit me", or "Leigha is being mean to me", early bed tonight for all of them considering I woke them all up early tonight.
Another good thing for today!!
What's your good thing to happen today?
Tuesday, 8 December 2009
Lemonade :p
Update.....
So it wasn't so bad in the long run, infection is a no. Thank goodness. The tube is ?sutured we think? not so sure about that but since we have it secured every which way to the moon it should be good enough to last until next week. 7 days tomorrow and counting officially. I will be so happy to be rid of this cumbersome thing. And I know for sure Leigha will too.
But even tho I had to make the rush into the doctors this afternoon the day wasn't a whole write off. We managed to get the dogs groomed for the holidays with Tasha being bathed and brushed and Abby her usual shave down so she isn't bald by the New Year from biting herself raw as is her norm this time of year...well any time of year really. I got the boys into the barber for a hair cut as well and Ryan actually sat in the Barber chair and had an actual conversation with Tony this time with his head up and eye contact. It was amazing. We left a bit sticky from the whole situation as we had to bribe him with candy to even get him into the chair to start and of course Leigha managed to get her hands onto the candies too, can't blame her for wanting them and I wasn't about to try and take them away either :p
I picked up the very expensive dryer motor so that we can see if replacing it will help with our problem of ours needing to be run over and over just to dry one load. It was so bad when we got home from the Stollery with Leigha that I had to run one load 5 times to dry it. Had I not needed the sheets very badly I would have hung them out. I went out the next day and purchased a new clothes line and more hangers and now hang over 90% of our clothes. My dining room looks like what a laundry room should look like if I had a laundry room that is :p I will most likely keep doing this but since the sheets, towles and socks get crunchy when I line dry them I will most likely dry them in the tumble dryer. We are hoping that by changing the motor we can get another 6-12 months out of it before having to replace it.
Either that or I am going to have to move to a warmer climate no matter what :p We were even home long enough tonight for a quick bathroom break, drop off the dogs, Nathaniel to change clothes for his Jui Jitsu class and then back out the door for another jaunt downtown for his class for a half hour. It has been a busy day and somehow in amongst it all they are fed, watered and in bed all snug. And not one meltdown by anyone today. That in itself is a miracle considering the boys usually lay into one another the instant they are in a room together for longer than 5 minutes.
IAnd considering funny occurances remember I was saying earlier about the fact that I was more than likely going to have to quit my job because I was unable to find someone to help out with the kids and the hours etc...well I got home this evening and low and behold there was a message on my machine from my boss asking if I was able to do some evening work with my little gal. Seems mom and dad want me back working with her and are open to the idea of evenings. I hope that this is a point in the right direction of some sort.
Onward and upward, a positive outlook and perhaps a glass of wine after such a long day :p I mean who wants lemonade at 10 o'clock at night?
So it wasn't so bad in the long run, infection is a no. Thank goodness. The tube is ?sutured we think? not so sure about that but since we have it secured every which way to the moon it should be good enough to last until next week. 7 days tomorrow and counting officially. I will be so happy to be rid of this cumbersome thing. And I know for sure Leigha will too.
But even tho I had to make the rush into the doctors this afternoon the day wasn't a whole write off. We managed to get the dogs groomed for the holidays with Tasha being bathed and brushed and Abby her usual shave down so she isn't bald by the New Year from biting herself raw as is her norm this time of year...well any time of year really. I got the boys into the barber for a hair cut as well and Ryan actually sat in the Barber chair and had an actual conversation with Tony this time with his head up and eye contact. It was amazing. We left a bit sticky from the whole situation as we had to bribe him with candy to even get him into the chair to start and of course Leigha managed to get her hands onto the candies too, can't blame her for wanting them and I wasn't about to try and take them away either :p
I picked up the very expensive dryer motor so that we can see if replacing it will help with our problem of ours needing to be run over and over just to dry one load. It was so bad when we got home from the Stollery with Leigha that I had to run one load 5 times to dry it. Had I not needed the sheets very badly I would have hung them out. I went out the next day and purchased a new clothes line and more hangers and now hang over 90% of our clothes. My dining room looks like what a laundry room should look like if I had a laundry room that is :p I will most likely keep doing this but since the sheets, towles and socks get crunchy when I line dry them I will most likely dry them in the tumble dryer. We are hoping that by changing the motor we can get another 6-12 months out of it before having to replace it.
Either that or I am going to have to move to a warmer climate no matter what :p We were even home long enough tonight for a quick bathroom break, drop off the dogs, Nathaniel to change clothes for his Jui Jitsu class and then back out the door for another jaunt downtown for his class for a half hour. It has been a busy day and somehow in amongst it all they are fed, watered and in bed all snug. And not one meltdown by anyone today. That in itself is a miracle considering the boys usually lay into one another the instant they are in a room together for longer than 5 minutes.
IAnd considering funny occurances remember I was saying earlier about the fact that I was more than likely going to have to quit my job because I was unable to find someone to help out with the kids and the hours etc...well I got home this evening and low and behold there was a message on my machine from my boss asking if I was able to do some evening work with my little gal. Seems mom and dad want me back working with her and are open to the idea of evenings. I hope that this is a point in the right direction of some sort.
Onward and upward, a positive outlook and perhaps a glass of wine after such a long day :p I mean who wants lemonade at 10 o'clock at night?
What to do When It's Too Cold to Play Outside
I live in Alberta, I have lived here all my life. I have never travelled very far from here and don't plan on moving away any time soon. So when you have lived here for your entire 29 years you learn to never underestimate the weather in Alberta. Take today for example it's -29 outside Celcius without the windchill. And since I live outside of Edmonton they don't typically tell you the windchill factor everytime they put the weather up on the news in the morning, that and I'm usually not awakle enought to notice. So if I were to guess I would say that with windchill it's probably about -33ish outside and I had to drive Nathaniel to school today. I wussed out yeaterday and called in saying "he won't be in" leaving out the whole "I don't want to drag my sad ass out of bed to drive him down the street when it is -35 outside and I don't have my car starter installed yet" yada,yada,yada.
So if you follow my cousin Carmen's blog you will have heard that Calgary (our neighbours to the south) got hit with a nasty blizzard on Friday (HAHAHA!!!!, sorry had to do it :p). And while it snowed a couple feet ( some areas have snow up to the roof of their cars and it's now hard packed) down there, we got hit with alot less up here. 8-10 inches depending on where you lived. It was a nasty storm and when it finally abated I was surprised that there weren't more cars abandoned in ditches and accidents reported. Especially since we didn't have any snow at all on the ground until Friday of last week. They were beginning to see the buds on the trees in some of the southern regions of the province, not good.
So I am now presented with the problem again of how to keep the boys from killing each other. I have been very unsuccessful at finding someone to watch the kids for me leaving me with the only choice to quit my job and move to a casul position and only work evenings and weekends. Neil and I discussed it last night and as long as I can cover one mortgage payment a month then we should be able to make it work. It's hard to find someone willing to work with Leigha and her problems and then we throw Ryan and his temper tantrums in just for fun and I have them running away screaming.
Sometimes I hate the fact that I am a healthcare worker. I seem to be so restricted to whereI can work and the type of work I can do. It's that or I have no imagination at all and have no clue what to do with my life other than to have kids and try and raise them up as best as I can. That is hard enough as it is. Add to that Leigha and all her problems and I am tapped out of ideas of what to do. I can work full time and hand over my paycheck to someone else for watching my kids, or I can stay at home with them and try to make it work somehow.
I know that God will present an option somewhere I just have to wait, but honestly we could really use a break right about now.
Moving on with an update about Smidget. We are almost a month post-op and things were going really good. She is still puking and cannot hold anything solid down and i s still having problems keeping down all the fluids be it juice or Pediasure. Friday night she was playing and happened to pinch her tube somehow and I noticed she had blood around her tube. I instantly thought she had pulled it out and broke the suture. It seemed okay and I had Neil help me secure it really well to her stomach when he got home from reffing. We spent all weekend monitoring it and she has become increasingly more aggitated about it and actually crying now when it gets bumped or moved. It is still bleeding and even tho we have a cream that protects the skin from breaking down from the acids in her stomach (it's an open port to her stomach, think of it as your mouth, only it's her tummy), it's still not looking good. So we have a dressing called Biotin that we have put around the tube to secure it and support it and absorb any secretions and then have tape over top of it to secure it again. The poor kid looks like a mummy.
So yesterday was when I began noticing that she smelled wierder than normal. She is on a liquid diet so she smells off anyway. People that eat a variety of foods generally smell "clean". Leigha smells sweet all of the time a bit like vanilla from the pediasure, but yesterday I began noticing that she was sour and then the runs. So we have the runs, a funny smell and then we noticed drainage at her tube that was not normal looking for what we were told to look for, it looked like a possible infection. So I cleaned it really well, dried the area from moisture and re-secured it. About 430 this morning she awoke crying, and she had a fever of 38.7 and fire butt. So she is still sleeping in no diaper (I will have a very wet bed to change when she gets up, but it's better than having her cry from having a very sore bum), and I have tried to give her Motrin every 6 hours to keep her fever down and we are seeing our Pediatrician's co-partner this afternoon. I am thinking the suture is broken and she has a site infection. We drew a line around where we secured it last night so we can tell where it moves, of it moves at all.
I'm crossing my fingers that it is an easy fix. She is scheduled for her Mickey insertion next week, but if she has an infection they can't do it without risk of creating a bigger problem.
I wish something would go right and easy for us for once. But we are only presented with the obstacles that God thinks we can handle. But I would really like an ant hill this time round. But as my girlfriend Casey says "just keep swimming". Neil and I are a team and we have good support and I know that it's one day at a time and one step.
I find myself as I go through this journey with Leigha and with our family that I am beginning to rely more on faith and trust that I am not in control of this. I canot fix Leigha and have to trust that there is an ultimate plan about how this is going to work out in the end. I cannot believe that Leigha was given into ours arms just to struggle. There is an end to all of this we just have to have the patience to wait it out.
I did not come from a faith driven family and did not become so until I met Neil. I do believe in God and have full trust in him that he will help us through this in some way. But if I can somehow help speed it up in some way I am sure going to try ;)
I have always loved this poem and even tho it is a combination of many verses of the bible but it does make me smile and I really need it right now and I know many others that do as well.
Please keep in your hearts and prayers our dear friend Cindy who is struggling with illness and trying to find the cause, she needs all the love and support we can give her. She is a very dear friend and I only wish I could do more to help her through this.
I'm hoping to be back later to update on leigha and hopefully to post about my sewing acheivements :o I have been very successful in them of late and am quite impressed with myself!!!
So if you follow my cousin Carmen's blog you will have heard that Calgary (our neighbours to the south) got hit with a nasty blizzard on Friday (HAHAHA!!!!, sorry had to do it :p). And while it snowed a couple feet ( some areas have snow up to the roof of their cars and it's now hard packed) down there, we got hit with alot less up here. 8-10 inches depending on where you lived. It was a nasty storm and when it finally abated I was surprised that there weren't more cars abandoned in ditches and accidents reported. Especially since we didn't have any snow at all on the ground until Friday of last week. They were beginning to see the buds on the trees in some of the southern regions of the province, not good.
So I am now presented with the problem again of how to keep the boys from killing each other. I have been very unsuccessful at finding someone to watch the kids for me leaving me with the only choice to quit my job and move to a casul position and only work evenings and weekends. Neil and I discussed it last night and as long as I can cover one mortgage payment a month then we should be able to make it work. It's hard to find someone willing to work with Leigha and her problems and then we throw Ryan and his temper tantrums in just for fun and I have them running away screaming.
Sometimes I hate the fact that I am a healthcare worker. I seem to be so restricted to whereI can work and the type of work I can do. It's that or I have no imagination at all and have no clue what to do with my life other than to have kids and try and raise them up as best as I can. That is hard enough as it is. Add to that Leigha and all her problems and I am tapped out of ideas of what to do. I can work full time and hand over my paycheck to someone else for watching my kids, or I can stay at home with them and try to make it work somehow.
I know that God will present an option somewhere I just have to wait, but honestly we could really use a break right about now.
Moving on with an update about Smidget. We are almost a month post-op and things were going really good. She is still puking and cannot hold anything solid down and i s still having problems keeping down all the fluids be it juice or Pediasure. Friday night she was playing and happened to pinch her tube somehow and I noticed she had blood around her tube. I instantly thought she had pulled it out and broke the suture. It seemed okay and I had Neil help me secure it really well to her stomach when he got home from reffing. We spent all weekend monitoring it and she has become increasingly more aggitated about it and actually crying now when it gets bumped or moved. It is still bleeding and even tho we have a cream that protects the skin from breaking down from the acids in her stomach (it's an open port to her stomach, think of it as your mouth, only it's her tummy), it's still not looking good. So we have a dressing called Biotin that we have put around the tube to secure it and support it and absorb any secretions and then have tape over top of it to secure it again. The poor kid looks like a mummy.
So yesterday was when I began noticing that she smelled wierder than normal. She is on a liquid diet so she smells off anyway. People that eat a variety of foods generally smell "clean". Leigha smells sweet all of the time a bit like vanilla from the pediasure, but yesterday I began noticing that she was sour and then the runs. So we have the runs, a funny smell and then we noticed drainage at her tube that was not normal looking for what we were told to look for, it looked like a possible infection. So I cleaned it really well, dried the area from moisture and re-secured it. About 430 this morning she awoke crying, and she had a fever of 38.7 and fire butt. So she is still sleeping in no diaper (I will have a very wet bed to change when she gets up, but it's better than having her cry from having a very sore bum), and I have tried to give her Motrin every 6 hours to keep her fever down and we are seeing our Pediatrician's co-partner this afternoon. I am thinking the suture is broken and she has a site infection. We drew a line around where we secured it last night so we can tell where it moves, of it moves at all.
I'm crossing my fingers that it is an easy fix. She is scheduled for her Mickey insertion next week, but if she has an infection they can't do it without risk of creating a bigger problem.
I wish something would go right and easy for us for once. But we are only presented with the obstacles that God thinks we can handle. But I would really like an ant hill this time round. But as my girlfriend Casey says "just keep swimming". Neil and I are a team and we have good support and I know that it's one day at a time and one step.
I find myself as I go through this journey with Leigha and with our family that I am beginning to rely more on faith and trust that I am not in control of this. I canot fix Leigha and have to trust that there is an ultimate plan about how this is going to work out in the end. I cannot believe that Leigha was given into ours arms just to struggle. There is an end to all of this we just have to have the patience to wait it out.
I did not come from a faith driven family and did not become so until I met Neil. I do believe in God and have full trust in him that he will help us through this in some way. But if I can somehow help speed it up in some way I am sure going to try ;)
I have always loved this poem and even tho it is a combination of many verses of the bible but it does make me smile and I really need it right now and I know many others that do as well.
Please keep in your hearts and prayers our dear friend Cindy who is struggling with illness and trying to find the cause, she needs all the love and support we can give her. She is a very dear friend and I only wish I could do more to help her through this.
I'm hoping to be back later to update on leigha and hopefully to post about my sewing acheivements :o I have been very successful in them of late and am quite impressed with myself!!!
Thursday, 26 November 2009
Is It Legal To Drug Your Kids Like This
Not that I did it but I did get a good chuckle out of seeing Leigha stoned out of her tree. I was truly thankful that she was not in any amount of pain once they wheeled her out of surgery last week. My biggest fear was that she would be incredibly uncomfortable and that we would end up being sent home and have to deal with pain management somehow here at home. I am sure that no amount of Motrin or Tylenol could give any comforting effect after having your abdomen ripped open and then stapled back together again.
These were taken just after she had arrived onto the unit. She was settled in to the ISO unit, basically a ward style unit of 4 beds with kids all needing higher nursing care. We lucked out on day one having 2 older kids and one little guy with a trach. It was very quiet and we all managed to get a bit of sleep despite the whole crappy rocking chair for a bed thing.
I could not resist, the terrible mother that I am, and not take pictures of her in her stoned state of affairs. Once the nurses got her settled and I was no longer able to stay away I was at her side in about a blink and duck taped to her side for the remainder of the six days she was there, well not quite Neil came and stayed one night so I could go home and sleep apparently I began to talk nonsense so they sent me home where I crashed and slept 14 hours straight. I remember having a conversation with the secretary at Nathaniels school. she called at some horrid time because Nathaniel had not shown up for class like I had said he would (my MIL did not want to get up early to drive him over, she was tired and figured it was only Kindergarten and he was not going to miss much), I reached for the phone in reflex and only when it dawned on my who I was talking to did I clue in...our conversation went alot like this:
M: Hello,
M: Yes......what about him..
S: he is not in class today we are wondering if you are running late or if he is not coming today.
M: (now here is where I get really brilliant in the mornimg): but its only Thursday and I said he was not going to be back until Friday..
M: No!! its only the 17th (see how smart I am after 3 days of no sleep I cant even remember what day of the week it is let alone what the date is).
S: ( with questioning voice) Ummm, no its the 20th today, so does that mean that Nathaniel wont be in class today
M: Well... if he isnt there by now I wouldn t expect him. I dont have him here with me, he is over at his grandparents, and if they haven t shown up with him by now then they aren t planning on it. He will be back on Monday for sure.
S: (now very confused) oh kay...
M: Nathaniels sister had surgery on Tuesday and that has kind of turned our house upside down, things should be back to normal by Monday.. thanks for calling
And then I very nicely hung up the phone and fell back asleep for another 3 hours :p
I was up by 730 and back to bed by 9. It was wonderful and the next day I was coniving ways to bribe the boys into letting me take a nap without them killing each other while I did it. I figure I could sleep a week and still not be caught up.
Im thankful that kids are fast healers, by Thursday she was up in bed smiling and laughing and kicking the tv over the bed with her feet. It takes alot more than surgery apparently to keep this one down.
So once I finally got Leigha to let me look at her stomach with out yelling OWIE!!! everytime anyone even touched her (not that I blame her AT ALL), I was able to get a shot of the actual thing. It doensèt look to bad all things considering. We expected alot worse. The only clinch is that the tube from where it inserts her stomach, it has to remain upright for about half inch or else it will elongate the hole that the button will be inserted into, and thus mess the whole thing up. Right now we have noticed that the way the tube naturally wants to go is to the left and we can already see the tube beginning to make a ovlal shape on that side. I have booked an appointment with our pediatrician on Tuesday so will ask about it then. Neil and I vividly remember them saying to keep the hole round so that it doesnèt leak, I èm not sure how to do that with a kid who can move and pull on it.
The day before our discharge Neil got a picture of the two of us together in the room. With her being on continuous feeds it was difficult to go anywhere with her at all and more so to keep her entertained in the room. She wanted to move and how do you keep a 17 month old busy when they dont exactly watch tv.
Last night she started vommiting. I was told that once she had the fundoplication she wasnt supposed to be able to do that anymore due to the banding around her stomach. So when she woke up this morning and was still doing it I did what any mother would do and called the doctors. Of course it was luch and I had to wait.
Once I finally got in I was put right in to see the doc covering for our pediatrician (Dr Teoh, he is asian and usually dyes his mohawk funny colors to impress the kids) while she is away this week. He is great and reassured me that she probably has the stomach flu but it isnt worth worrying over. Im not worried as long as it isnt a complication from the fundo, I can deal with the flu. Heck the flu is nothing in comparison to the multiple pneumonias, cold and other bugs she has had over the last 17 months of her life.
As long as she isnt running a fever higher than 38.5 then we can keep her at home on clear fluids and half strength formula. If it gets any worse we have to go directly to the Stollery ( my very favorite place :p)
and take it from there. I think they will decide what to do if it comes to that. Probably Xrays and bloodwork Not sure how they do xrays on kids with g-tubes as they cant put her in a clam shell.....not my problem or worry right now. But I did wonder how they did it as we sat and waited afternoon. For now we have started her on Peidalyte and part of her Pediasure to fill her stomach a bit and Ièm hoping that by the weekend she will be on the mend. Then the last hurdle will be to find a sitter and I can look at going back to work.
I will appologise for the paragraphing down the page, not sure what happened but when I uploaded the pictures my typing went all wonky and I really don/t feel like spending 2 hours trying to figure it out. That and Leigha pushed some button on the computer that has turned off the question mark and the appostrophy and made them into french accent markers, have no clue how to fix that either, you will have imagine that all the words that should have an appostrophy have them and well the questions...same thing. :p
As Im re-reading this I noticed that it is all over the place and not in order. Forgive me for babbling. I know you are all brilliant people who will have absolutly no trouble at all figuring it all out. I know you all only came here for the pictures anyway;) I did go bakc and check most of the spelling and grammer, thats not to say I didnt miss about a million of them, but just turn your head sideyways then it will all look normal and make more sense to you. It works for me anyway.
Thursday, 19 November 2009
Smidget's New Lease...
We are two days post surgery and things are suprisingly looking good. Leigha is amazing us in so many ways.
Tuesday morning we had to be at the hospital for 630am, which meant waking her up at 530 to arrive there on time, including the walk through the hospital and admitting time, etc. It was alot of hurry up and wait. She went in at 930, and this time Neil went in with her. Unfortunatly he had the same experience with her in anesthesia and surgery that I had the first time, with them putting her out and then whisking her away and pushing him out the door, literally pushing him out. This time tho we did know where to wait for her. After 3 hours we finnaly got to see our spaced out monkey, flying high as they wheeled her onto the ward in a stroller higher than the Beatles on any one of their records.
After a pretty quiet first afternoon and night I was up for a big surprise on Wednesday when she promptly decided for none of this lazing around in bed stuff, "I want out!!!" and then she promptly tried for the next..oh 3 hours to climb the rails. I finally was able to get her into a stroller and out onto the ward for a bit until it got to be a work trying to haul the pole with the pumps and tubes and steer the stroller with one hand. I mean I'm talented and all but not that talented.
She managed by about 830 last night to work herself into a tizzy and from about 845 until midnight switched between flat out screaming "MAMMA!!!" at the top of her lungs with huge crocodile tears and, and then quick as a wink smiling and making kissing noises at you. It's funny how morphine affects little people. I spent alot of last night pawning her off onto the nursing staff as I had had enough of her by about 9pm, and even calls to Neil couldn't make me not want to sell her to a travelling gypsy show. I know it was lack of sleep and stress on both our parts and am glad I was able to step away for a time and take a breather. She finally settled at about midnightish (1230 but who's clock watching), and once I finally got settled into my recliner (yes I got a lovely recliner chair to sleep in, it was oh so comfy), I think I managed about 4 good hours of sleep before first rounds began. Needless to say I am very sleep deprived and retarded.
Today we managed to cut down her morphine by 1mgm, and we added another pain killer (Toradol) to the mix to help get rid of the itchiness that she had been experienceing because of the Morphine, gotta love side effects. Leigha decided she didn't like the catheter they had inserted so managed to break it and make it leak everywhere so that came oout this afternoon, prompting the removal of the epidural at about 4pm as well. This is all a day earlier than originally planned. Our surgeon has already removed part of her staples and the incision looks amazing!! and her tube site is great. If we can keep the hole round for the next 4-6 weeks we will be laughing!!!
The next steps will be a walk in the park I think in comparison to this. Despite the fact that we have to now completly limit her oral feeds, so no more solids unless they are smushy (pasta, or anything not liquid at room temperature and smushy that we know she'll eat...so pasta and rice...and MiniGo's), and she can now only have thickened liquids 2-3 oz at a time spaced every 2-3 hours apart to avoid aspiration and further complications.
It's going to be an interesting few weeks coming up but I can already see how this is making her feel. She is already looking so pink in the cheeks and she hasn't gone blue yet (tho I think by writing it I jinxedit) and other than the 2 d-sats to 80% when her oxygen levels fell abruptly last night and today, she has been great with her numbers on the monitors.
I'm home right now and have sent Neil into the trenches until I can go back tomorrow and sit with her. I need to sleep for real and have a break to recharge. I'll be back later with phots of monkey, I have some cute ones of her spaced out trying to feed her dolly :p Totally cute.
Tuesday morning we had to be at the hospital for 630am, which meant waking her up at 530 to arrive there on time, including the walk through the hospital and admitting time, etc. It was alot of hurry up and wait. She went in at 930, and this time Neil went in with her. Unfortunatly he had the same experience with her in anesthesia and surgery that I had the first time, with them putting her out and then whisking her away and pushing him out the door, literally pushing him out. This time tho we did know where to wait for her. After 3 hours we finnaly got to see our spaced out monkey, flying high as they wheeled her onto the ward in a stroller higher than the Beatles on any one of their records.
After a pretty quiet first afternoon and night I was up for a big surprise on Wednesday when she promptly decided for none of this lazing around in bed stuff, "I want out!!!" and then she promptly tried for the next..oh 3 hours to climb the rails. I finally was able to get her into a stroller and out onto the ward for a bit until it got to be a work trying to haul the pole with the pumps and tubes and steer the stroller with one hand. I mean I'm talented and all but not that talented.
She managed by about 830 last night to work herself into a tizzy and from about 845 until midnight switched between flat out screaming "MAMMA!!!" at the top of her lungs with huge crocodile tears and, and then quick as a wink smiling and making kissing noises at you. It's funny how morphine affects little people. I spent alot of last night pawning her off onto the nursing staff as I had had enough of her by about 9pm, and even calls to Neil couldn't make me not want to sell her to a travelling gypsy show. I know it was lack of sleep and stress on both our parts and am glad I was able to step away for a time and take a breather. She finally settled at about midnightish (1230 but who's clock watching), and once I finally got settled into my recliner (yes I got a lovely recliner chair to sleep in, it was oh so comfy), I think I managed about 4 good hours of sleep before first rounds began. Needless to say I am very sleep deprived and retarded.
Today we managed to cut down her morphine by 1mgm, and we added another pain killer (Toradol) to the mix to help get rid of the itchiness that she had been experienceing because of the Morphine, gotta love side effects. Leigha decided she didn't like the catheter they had inserted so managed to break it and make it leak everywhere so that came oout this afternoon, prompting the removal of the epidural at about 4pm as well. This is all a day earlier than originally planned. Our surgeon has already removed part of her staples and the incision looks amazing!! and her tube site is great. If we can keep the hole round for the next 4-6 weeks we will be laughing!!!
The next steps will be a walk in the park I think in comparison to this. Despite the fact that we have to now completly limit her oral feeds, so no more solids unless they are smushy (pasta, or anything not liquid at room temperature and smushy that we know she'll eat...so pasta and rice...and MiniGo's), and she can now only have thickened liquids 2-3 oz at a time spaced every 2-3 hours apart to avoid aspiration and further complications.
It's going to be an interesting few weeks coming up but I can already see how this is making her feel. She is already looking so pink in the cheeks and she hasn't gone blue yet (tho I think by writing it I jinxedit) and other than the 2 d-sats to 80% when her oxygen levels fell abruptly last night and today, she has been great with her numbers on the monitors.
I'm home right now and have sent Neil into the trenches until I can go back tomorrow and sit with her. I need to sleep for real and have a break to recharge. I'll be back later with phots of monkey, I have some cute ones of her spaced out trying to feed her dolly :p Totally cute.
Wednesday, 7 October 2009
The Next Hurdle
So the update of the last week as it stands?
In an attempt to call our Nurse Practitioner- and let me interject that I pager her at 930 and was still waiting for her to call me back when I finally gave up and moved onto the next hurdle- I had to make 2 calls, the first to the ENT office where I talked to his oh so lovely "receptionist" who told me he was unavailable...duh, do I look like an idiot? (don't answer that). So I finally after being given one number to call I finally got her pager number and did so, and waited........and waited.....until 200pm, when I gave up.
I called our surgeons office instead and got his receptionist and there I got the whole story of what was going on. Turns out the message got messed up.
What happened was this: Our ENT has cancelled his surgery on the cleft due to the fact that Leigha is going to have the Fundo application and PEG tube insertion. He thinks that having the cleft repair at the same time would be too much at once. So once we got that under control and sorted out we have a date:)
Novemeber 17th 2009 my daughter will be having surgery...again....
I'm terrified.
I know on here I can somehow seem altogether and composed, but honestly I am a mess. I have this vast medical crap inside my head and that unfortunatly is posing a threat to my sanity. Not that it was so intact to begin with, but somehow it's getting worse.
I look at her all happy and smiles and in the back of my head is the voice saying "what is she going to be like a month from now?" , "are we making the right decision?". How do I answer these questions? I listen to her in her bed at night whistling as she breathes and know that everyday the fluid is building up in her lungs and causing permanent damage. Today I made the mistake of putting a stethoscope to her chest, her left side is so congested that I can barely even hear any air moving through the crackles.
Will this have any impact on her in the future when we go to reverse it? Will she be forever turned off of oral food completly? Is she going to have to have thickened drinks forever? Unfortunatly most of these questions are trial and error. I can only hope that God will watch over her and guide our surgeons hands during the actual surgery and that she does well once all is said and done.
I'm tired of having a sick kid all the time. Even tho it sounds horrid to say and I know I am blessed to have her as healthy as she is, But I want her to be fixed up and this to be over. It's been such a long haul these past 11 months, I'm hoping I have the strength to get through the next 8 or more.
Maybe in 6 months from now I can actually be writing about a trip to Toronto for the repair on the cleft and that this will be the last phase of surgeries that we will have to be looking at in her little life thus far.
How on earth do parents of chronically ill kids do this day in and out? Maybe I am doing it and not realising it? Who knows?
If I can get through the next 40 days, I mean Noah built an ark and managed to float it for 40 days, shouldn't I be able to stay sane for at least that long?
But then he didn't know my 2 sons?
In an attempt to call our Nurse Practitioner- and let me interject that I pager her at 930 and was still waiting for her to call me back when I finally gave up and moved onto the next hurdle- I had to make 2 calls, the first to the ENT office where I talked to his oh so lovely "receptionist" who told me he was unavailable...duh, do I look like an idiot? (don't answer that). So I finally after being given one number to call I finally got her pager number and did so, and waited........and waited.....until 200pm, when I gave up.
I called our surgeons office instead and got his receptionist and there I got the whole story of what was going on. Turns out the message got messed up.
What happened was this: Our ENT has cancelled his surgery on the cleft due to the fact that Leigha is going to have the Fundo application and PEG tube insertion. He thinks that having the cleft repair at the same time would be too much at once. So once we got that under control and sorted out we have a date:)
Novemeber 17th 2009 my daughter will be having surgery...again....
I'm terrified.
I know on here I can somehow seem altogether and composed, but honestly I am a mess. I have this vast medical crap inside my head and that unfortunatly is posing a threat to my sanity. Not that it was so intact to begin with, but somehow it's getting worse.
I look at her all happy and smiles and in the back of my head is the voice saying "what is she going to be like a month from now?" , "are we making the right decision?". How do I answer these questions? I listen to her in her bed at night whistling as she breathes and know that everyday the fluid is building up in her lungs and causing permanent damage. Today I made the mistake of putting a stethoscope to her chest, her left side is so congested that I can barely even hear any air moving through the crackles.
Will this have any impact on her in the future when we go to reverse it? Will she be forever turned off of oral food completly? Is she going to have to have thickened drinks forever? Unfortunatly most of these questions are trial and error. I can only hope that God will watch over her and guide our surgeons hands during the actual surgery and that she does well once all is said and done.
I'm tired of having a sick kid all the time. Even tho it sounds horrid to say and I know I am blessed to have her as healthy as she is, But I want her to be fixed up and this to be over. It's been such a long haul these past 11 months, I'm hoping I have the strength to get through the next 8 or more.
Maybe in 6 months from now I can actually be writing about a trip to Toronto for the repair on the cleft and that this will be the last phase of surgeries that we will have to be looking at in her little life thus far.
How on earth do parents of chronically ill kids do this day in and out? Maybe I am doing it and not realising it? Who knows?
If I can get through the next 40 days, I mean Noah built an ark and managed to float it for 40 days, shouldn't I be able to stay sane for at least that long?
But then he didn't know my 2 sons?
Wednesday, 30 September 2009
Updates That Are Really No Help
My phone died today of all days. I had plans to call the Stollery and play phone tag with our ENT's nurse practitioner to see if she could get into his tiny little head and find out what is going on in there.
...sigh...it's on my list for tomorrow...added to at least. I think I have a list of 5 calls to make in the span of 3 hours, most importantly being ordering Leigha's formula and thickener for this next month and then ordering it from Canmore once my credit card is clear enough to let me :p Gotta love my house today :p
I think I'm going to window shop online and it may make me feel better until I get to yell at someone tomorrow. I really felt like doing that today, but alas I didn't get to...
But I did get to spend a wonderful day with my little gal that I watch in home care who is starting to smile now that we have begun weaning her from one of her meds. She actually pointed at me on Monday when I came into the house. I hadn't seen her in about 10 days, she missed me...makes my horrid day all better with that. I spent most of my day holding her hand and singing silly songs to her
What a wonderful way to spend a crappy day hey;)
...sigh...it's on my list for tomorrow...added to at least. I think I have a list of 5 calls to make in the span of 3 hours, most importantly being ordering Leigha's formula and thickener for this next month and then ordering it from Canmore once my credit card is clear enough to let me :p Gotta love my house today :p
I think I'm going to window shop online and it may make me feel better until I get to yell at someone tomorrow. I really felt like doing that today, but alas I didn't get to...
But I did get to spend a wonderful day with my little gal that I watch in home care who is starting to smile now that we have begun weaning her from one of her meds. She actually pointed at me on Monday when I came into the house. I hadn't seen her in about 10 days, she missed me...makes my horrid day all better with that. I spent most of my day holding her hand and singing silly songs to her
What a wonderful way to spend a crappy day hey;)
Tuesday, 29 September 2009
On The War Path
I'm going to be short here as I am playing damage control. after what almost a year or so of troubles we finally get a doctor willing to do surgery to get us one step further to correcting Leigha's cleft and today when I returned from work I get the lovely message from Neil that our ENT, the guy that was so behind us before has put the brakes on and doesn't want her to have the fundo and PEG done.
Dr Lees office called and informed us today, I am shocked.
Absolutely shocked, I don't even know what to do. I don't get it. Why now? I mean last week he was all for it. Yes lets do it and see how it goes, fix the pneumonias and then we can look at the cleft and go from there. Sounded good to us. I mean we are the parents, right?
It's a bunch of crap and I'm at a loss. Here we were all prepping to go for surgery, getting the boys ready to expect this and planning what we were going to do, etc. Now I have to call tomorrow and figure out what is going through his tiny little head.
I am at a loss....
I want to hit something...hard....repeatedly.....till I break something.
Dr Lees office called and informed us today, I am shocked.
Absolutely shocked, I don't even know what to do. I don't get it. Why now? I mean last week he was all for it. Yes lets do it and see how it goes, fix the pneumonias and then we can look at the cleft and go from there. Sounded good to us. I mean we are the parents, right?
It's a bunch of crap and I'm at a loss. Here we were all prepping to go for surgery, getting the boys ready to expect this and planning what we were going to do, etc. Now I have to call tomorrow and figure out what is going through his tiny little head.
I am at a loss....
I want to hit something...hard....repeatedly.....till I break something.
Wednesday, 10 June 2009
In a Funk
Just so you don't think I've fallen off the earth and died again. I'm still alive. Covering for one of the surgeons in town while his receptionist has time off for surgery. That and I'm trying to get my head around Leigha still. She is not doing well with the tube feeds. Gagging alot with the gravity feeds to the point that we can't even hang a bag anymore without her puking it up at us. We have now resorted to following her around with a 60cc syringe and pushing 10-20 mls of Pediasure into her at a time then giving her a break for about 20-30mins then doing it again. It's frustrating me and I don't know where to turn. No one has any answers for us and no one knows what to do next. The home nutrition team is just as stumped as we are. At least the blue spells have gone away, buts its the only goods thing that's come out of it so far. She still remains her happy self for the most part but now has a constant cough, runny nose and slight evevated fever. I'm now having to get up at least 3-4 times a night and rock her back to sleep. She cries out so much...like now.... I'm off to soothe her again. I'll be back tomorrow with more on the past week and maybe a brighter outlook.
Monday, 25 May 2009
Lost Momentum
I'm still out here in a sense. I've lost momentum of late and can't find the groove again. Ever since we got home on Thursday I can't pick the ball up again and get going. I'm just so tired and lack the motivation to do anything. I can't seem to find myself and it seems like I'm going around in circles and not getting anywhere fast. Leigha isn't doing very well since we got home. The tube feed is going well. We had our first change last night just Neil and I. It went well and I got it in on the second try after it folded in her nasal cavity and poked back out. The unfortunate part about the NG tube is that the tapes that hold it down on her cheek are beginning to aggravate her skin and it's pulling up at her nose so it looks like we will have to change it frequently to avoid her skin breaking down. A real hassle but if it means avoiding a further problem then it's a good thing I guess. We have an appointment o n Friday with our Pediatrician to follow-up on after our discharge. I guess we will then decide where to go from here. Leigha is still not eating much so we are relying a lot on the tube feed but are finding it difficult to get into any type of routine here at home with her being such an active kid.
She is supposed to get 800 mLs of the Pedia sure daily and 450 mLs of regular thickened fluids on top of that. We are lucky if we get her to take 2 tube feeds and 2 bottles of 240 mLs (that's 480 mLs, and we don't add that to the 800). We have the oral stuff down but getting her to stay still for half an hour or so attached to a pole is tough. We are supposed to run the feed after she eats not during so it means she is usually sitting in her high chair after we are done eating, she doesn't want to be in the chair anyway so it's tough.
I'm sort of losing confidence and at a breaking point. The stress of dealing with her illness has become very overwhelming and even tho we have had support from friends and family it still becomes a lot to handle when it is your own child suffering from an unknown disorder that even the doctors are unsure of the cause. I don't even think they have a plan of action right now other than maintenance and see how it goes. I'm not keen on keeping her on the tube feed, she is beginning to develop food aversions, I know where this will lead in time, and I know it's not getting better the longer it takes.
Tomorrow is another day and I'm hoping that with the sunrise Leigha will be happier and we can get somewhere in her recovery. I know it's going to take time right now and nothing happens overnight. I just wish they had listened when we first brought it up to them that there was a problem. Why is it that mom's have to fight so hard to get someone to listen to us especially when we KNOW we are right??
Thursday, 21 May 2009
10 Things I Discovered While In Hospital
1. I Really Hate to be woken up
2. I don't like it when others think that they know a disease /disease process better than I know what my child is really doing in response to it.
3. I hate it when people are excessively noisy when sick kids are trying to sleep and get better...do you really think they are here for the fun of it???
4. I think Speech Language Pathologists should be SHOT
5. I should not be on the computer typing on the Internet to my internetees when I have only managed to have 5 hours of "restful" sleep in 9 days.
6. My previous post had to be "fixed" as when I proof read it today it was a babbling mess. And even tho I know you can now all speak "Meghan" (I have my own language...really I do, ask my sister, Neil, Caughleigh. You should feel special that you actually understand it) I felt the need to go back and fix it before more people out there read it and tried to decipher the nonsense of it all.
7. I HATE hospitals with a passion as they stick you in a tiny room shared with a stranger and then try to make you feel at home enough to feel comfortable then tell you not to leave for an undetermined amount of time.
8. They still have not given us an answer to why we were admitted in the first place last week.
9. I have to gravity feed my daughter 800 cc of Pedia-sure for the next 8-12 weeks without really knowing fully why I am doing other than the fact that she is gaining weight fromit, not turning blue anymore nad seems happier...Enough of a reason yes, but I would have liked them to do some more tests to rule out some other problems...wouldn't you?? Never did have an echo.
10. I can't think of a 10?? I really am going to go to bed as now there is more than two lines of numbers and I haven't typed more than 10 points...sigh....
I'll have more of a logical update tomorrow and a picture of what Neil did to poor smidget tonight after her bath. Let me provide the mental picture and just say that she looked like a dork with the yellow nasal tube, mohawk and the pink pj's. By tomorrow I should be more coherant and able to tell more of a story of where we stand and what's to come. TTYL:)
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