Today is the day of the little miss birthday party. Theoretically she does not turn one till tuesday but we wanted to be able to invite all of our family and friends to come. I will be posting pics and giving more of an update. I am going to try and focus on the year of positives today. However, i had nightmares last night that did not help with the positive attitude. The little lady has been struggling with her temp lately. She loves to be in the low 96's and upper 95's. Not a pretty thing for her! lol. Leaves her relatively cranky. Well i just wanted to put a blurb on today and will update a long post about medical business, texas trip (p.s. i kinda think her gi doc is cute.. shhh dont tell anyone! lol), and the home health nurses.
Have a great day!
Saturday, October 24, 2009
Saturday, October 17, 2009
If looks could kill!!!
I would be having a dead hh. Today was a rough day. We got a new one that had not orientated with k. I guess she had gotten lost on her way here and was just bitchy to begin with. NOT good! So I tried to remain optomistic about her. But when she came in and snapped at A.. oh heck no. I get mad at dh when he snaps at her! lol. So needless to say I called the agency and said do NOT ever allow her in my home again! The on call girl did not call me back until 3hrs later. I was a bit miffed about that! Then second guessed me. She said I guess these are valid since you aren't complaining she is using your microwave or something. Sure i am bored and wanted to bug you. NOPE! Then she got quite understanding when i said i called the case manager on her cell. ;) lol.
Today has been an off day for her. Her G tube is blocked! ugh. So it looks like an early trip to the ER in texas on monday. We could live without the G port. But that is where she takes her meds when she refuses them by mouth. She has a J port also. So that saved us tonight so we did not have to go back. And if her hh nurses were flushing they would have discovered this. Eh oh well. Wish us luck! We leave on monday!
Today has been an off day for her. Her G tube is blocked! ugh. So it looks like an early trip to the ER in texas on monday. We could live without the G port. But that is where she takes her meds when she refuses them by mouth. She has a J port also. So that saved us tonight so we did not have to go back. And if her hh nurses were flushing they would have discovered this. Eh oh well. Wish us luck! We leave on monday!
Friday, October 16, 2009
A weekly update!
Hello all! First I have to say thank you so much to the readers that read this blog. I can't say how much we love your support even for those that dont post! ;)
So life has been a bit chaotic as of late. Our godson was born on the 13th! He is so handsome! Of course I might be a bit biased. Genesis told me mom since you could not keep my brother in your belly I have a godbrother. Let's just say I bawled my eyes out. (btw i have not really told her about angel robert! kids they know!) Then I took G up to the hospital to see her aunt tonya and she got so upset bc she thought that aunt tonya was going to have to be there for a very long time just like kenadie and mommy had to be. Again I cried. I almost feel like I have ruined my child. ugh. Then tonight I had to take K to the hossy and she says bye mommy I will see you tomorrow. You will sleep at the hospital and I will sleep in your bed like I usually do when you are gone. At least she keeps my side of the bed warm! ;) lol. So you read that right I had to take k to the ER tonight. Which i was very nervous about doing bc of the H1N1 crap. WE might have had the flu but even the docs were like RUN out of here when they dc'd us! lol. K's intestines are moving slower now so we are having problems with her tube. Just part of her AD. Then she got spastic on us which made her home health (hh) very nervous. But she remained calm. Then we got home and her hr plunged down to 64. Good thing I dont really get excited anymore. Now her nurse did a bit. Just bc this is the first time for her to experience it. she did good. Whish we could keep her around more. :)
K has gained almost a lb since getting her new tube! So we are so excited about that. She is pulling up all the time now. Can't keep this girl sitting anymore.
I am having a hard time lately. It is hard to accept reality when you are so busy you dont allow yourself to. Then nights like tonight slap you in the face. :*( I don't get it. I dont understand. How does a worthless peice of poop get a child kill it with abuse and my baby has to endure this stuff. I know it could be worse and pleases dont remind me of that. I have had plenty of those reminders. When we checked in the ER the lady took one look at k and goes are you sure she has these issues. Nah we are just bored and had nothing else to do. lol. But when they seen her temp bottom out. The nurse quickly changed her tune. Btw the triage nurse. She needed a good drink or a good night with a man! She was so RUDE! The docs on the other hand knew us. So we were in and out very quickly. :) When momma cried the hh nurse was so sweet. She was like you are doing a great job with her. She's beautiful. Thanks but this is the hardest job God gave me. Well i am off to do some farming on my fb. lol. Night! Please email if you have any questions. I am an open book about her condition.
So life has been a bit chaotic as of late. Our godson was born on the 13th! He is so handsome! Of course I might be a bit biased. Genesis told me mom since you could not keep my brother in your belly I have a godbrother. Let's just say I bawled my eyes out. (btw i have not really told her about angel robert! kids they know!) Then I took G up to the hospital to see her aunt tonya and she got so upset bc she thought that aunt tonya was going to have to be there for a very long time just like kenadie and mommy had to be. Again I cried. I almost feel like I have ruined my child. ugh. Then tonight I had to take K to the hossy and she says bye mommy I will see you tomorrow. You will sleep at the hospital and I will sleep in your bed like I usually do when you are gone. At least she keeps my side of the bed warm! ;) lol. So you read that right I had to take k to the ER tonight. Which i was very nervous about doing bc of the H1N1 crap. WE might have had the flu but even the docs were like RUN out of here when they dc'd us! lol. K's intestines are moving slower now so we are having problems with her tube. Just part of her AD. Then she got spastic on us which made her home health (hh) very nervous. But she remained calm. Then we got home and her hr plunged down to 64. Good thing I dont really get excited anymore. Now her nurse did a bit. Just bc this is the first time for her to experience it. she did good. Whish we could keep her around more. :)
K has gained almost a lb since getting her new tube! So we are so excited about that. She is pulling up all the time now. Can't keep this girl sitting anymore.
I am having a hard time lately. It is hard to accept reality when you are so busy you dont allow yourself to. Then nights like tonight slap you in the face. :*( I don't get it. I dont understand. How does a worthless peice of poop get a child kill it with abuse and my baby has to endure this stuff. I know it could be worse and pleases dont remind me of that. I have had plenty of those reminders. When we checked in the ER the lady took one look at k and goes are you sure she has these issues. Nah we are just bored and had nothing else to do. lol. But when they seen her temp bottom out. The nurse quickly changed her tune. Btw the triage nurse. She needed a good drink or a good night with a man! She was so RUDE! The docs on the other hand knew us. So we were in and out very quickly. :) When momma cried the hh nurse was so sweet. She was like you are doing a great job with her. She's beautiful. Thanks but this is the hardest job God gave me. Well i am off to do some farming on my fb. lol. Night! Please email if you have any questions. I am an open book about her condition.
Saturday, October 10, 2009
Holy SWINE (H1N1) Flu!
Yep that is right. We have H1N1 (piggy) flu going in our house. Tuesday Alexus starts running a fever and I asked the school that she goes to if they are having flu going around. The director says no no. Well it knocks me on my a** on wednesday night. My body hurt so bad. I could not move my joints. I was so congested that I wanted to punch something it was so frustrating. Well i went to urgent care and he says yep you are + for Flu A. SOB! ugh. Then k runs a 103 fever so I have to take her to the pedi. She is + and put on O2 due to low stat. Then I find out Alexus is + and Genesis is + too. Lord I am going to go nuts! K is kicking some piggy butt though. She is doing awesome! I have to attribute that to the tamiflu! I love it! Plus the moment I n otice them sick i run their butts to the doc and the doc said that was the key for the tamiflu.
So not much has gone on this week. She has gained 9 oz of weight with her new tube! We are so happy with our gj. It took me months of fighting for it and now that she has it she is doing marvelous with it. She has more energy. Having more bm's. Is doing more of her milestones. Her pedi is like Alisha you knew. Yes mam! I am happy that we are having progress. She is now trying to pull up on things and when she gets up on things she is taking side steps! My lord my baby is about to be walking! As she becomes more mobile we are having more autonomic issues with her temp and purpling issues. But we are learning to cope with those. We should have homehealth care started on tuesday. I pray. It has been a month in the works. We NEED the extra help as she gets really rigid at night and it is hard to calm her down and be able to get any rest at all. I will update as soon as i can. Gotta head to bed.
So not much has gone on this week. She has gained 9 oz of weight with her new tube! We are so happy with our gj. It took me months of fighting for it and now that she has it she is doing marvelous with it. She has more energy. Having more bm's. Is doing more of her milestones. Her pedi is like Alisha you knew. Yes mam! I am happy that we are having progress. She is now trying to pull up on things and when she gets up on things she is taking side steps! My lord my baby is about to be walking! As she becomes more mobile we are having more autonomic issues with her temp and purpling issues. But we are learning to cope with those. We should have homehealth care started on tuesday. I pray. It has been a month in the works. We NEED the extra help as she gets really rigid at night and it is hard to calm her down and be able to get any rest at all. I will update as soon as i can. Gotta head to bed.
Sunday, October 4, 2009
Okay. So i will type this update out. Plus.. A birthday project!
Okay. As i was saying. With the conflict that has been going on. It has severly congested the communication highways with our pedi. What am i supposed to do about it? Any advice beyond wanting to punch the nurse? I know it is cold, flu, piggy flu, and croup season.. but she is the one that decided to manage k's care. She told her GI that she wanted to do it all. Okay so i believe it is going to take some work. she is a DIVA here. lol.
J-tube news: So we got our j tube in last monday. Overall it was horrific. They did not sedate my child like they said they would if it took longer than 20mins. She has a malformation in her bowels that creates some very skinny passages. So the radiologist was having a really hard time. Frustrating! I ask multiple times and they finally called the doctor and her doc was on the wards so the one in clinic would not authorize for it. It was major bullshit! 1hr and 20 mins later they got it in. I was so furious! She is tolerating her J feeds so well. Little to no leaking out of her stoma. And you can tell the girl has packed on some weight. She most definitely has her momma's thighs!
So on the homehealth front. Well that is an act of congress. Anyone willing to sign my petition i would appreciate! lol. We FINALLY got our letter on friday! So now we have to wait for OHA to come out and verify if in fact kenadie lives here and she needs the help. Like i would be asking for any other reason.
We are getting ready for Kenadie's big birthday bash. If anyone wants any information please email me about it. hancock_alisha@hotmail.com. We have had a few people ask about sending her items. WE dont mind at all. If you will email me i will give you her mailing address. Handmade birthday cards are cool too. If you will put your state on it. We would love it that way we can show here just where she is being supported from and all of the states!
J-tube news: So we got our j tube in last monday. Overall it was horrific. They did not sedate my child like they said they would if it took longer than 20mins. She has a malformation in her bowels that creates some very skinny passages. So the radiologist was having a really hard time. Frustrating! I ask multiple times and they finally called the doctor and her doc was on the wards so the one in clinic would not authorize for it. It was major bullshit! 1hr and 20 mins later they got it in. I was so furious! She is tolerating her J feeds so well. Little to no leaking out of her stoma. And you can tell the girl has packed on some weight. She most definitely has her momma's thighs!
So on the homehealth front. Well that is an act of congress. Anyone willing to sign my petition i would appreciate! lol. We FINALLY got our letter on friday! So now we have to wait for OHA to come out and verify if in fact kenadie lives here and she needs the help. Like i would be asking for any other reason.
We are getting ready for Kenadie's big birthday bash. If anyone wants any information please email me about it. hancock_alisha@hotmail.com. We have had a few people ask about sending her items. WE dont mind at all. If you will email me i will give you her mailing address. Handmade birthday cards are cool too. If you will put your state on it. We would love it that way we can show here just where she is being supported from and all of the states!
Saturday, October 3, 2009
hello. just an update.
Hello all. Just a lovely update from us. I am typing during a disappointing ou game. They are losing right now. :( So anywho.
We are all living and trying to stay sane right now. Kenadie is being her usual diva self. Today she decided to have some purple legs while we were interviewing a homehealth nurse. So at least we got to see how she was going to do with it. lol.
We have clinic this Friday and it will be interesting. We have had quite the conflict with our doctors nurse lately. Messages not getting to where they need to go. (message was typed last night but i went to bed before completing)
starting a new post. just an ocd thing. lol
We are all living and trying to stay sane right now. Kenadie is being her usual diva self. Today she decided to have some purple legs while we were interviewing a homehealth nurse. So at least we got to see how she was going to do with it. lol.
We have clinic this Friday and it will be interesting. We have had quite the conflict with our doctors nurse lately. Messages not getting to where they need to go. (message was typed last night but i went to bed before completing)
starting a new post. just an ocd thing. lol
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