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Thursday, October 21, 2010
pretty sure I was so mad I could see red
On Monday kenadie got her first Hizentra infusion. I was watching them talk about her dose. I knew what another company had said about the dose for her. They had said 2000 mg. Well her Dr said it is 6000 mg. I knew it was not right. I knew it. She was showing symptoms that night. Bc it is sub cu meaning under the skin not direct in blood she would not show the full effects of being od until Wednesday or so. Well I called her Dr yesterday in Ohio the nurse said she was to get 2000 mg every 10 days. I knew it. So I rushed her to the er. We are waiting for more bw to be done. It can throw them in chronic kidney failure, lung swelling, systemic menengitis, brain swelling. So now we sit n wait. She is running a fever then runs very cold, vomiting. I am so hurt by what has happened. I feel like I let her down. I am supposed to keep her safe. My trust in drs yet again been broke. I work so hard to keep this child alive. Someone's carelessness puts that in jeopardy.
Monday, October 11, 2010
Just the experiment!
Hello... Tonight is how I am feeling about this situation. I feel like she is just the experiment. I know in essence we are and that is how things are found and cured. But for one time I would like a clear answer and easy cure. I know that is not how it is meant to be. After all if that were the case I would not have met half of the people that support us. Then I am trying to help people in a positive way through my experience and I am glad I got to help one. I share with you a letter that a mom sent to me.
Alisha,
This is Jill, Mike's wife that you met at 50 penn place. I just wanted to say, thank you so very, very much for referring us to Dr. B. That was so very nice of you to take the time to tell Mike all about him and send us that direction. We love him!!! We are so relieved after the first appointment with him that we have a new, positive direction for our lil Riley. We have you to thank for that! We wish you and your family the very best! May God bless you as you have blessed us by your story and referral.
Thank you!!!
Jill
Tonight that letter boosted me up. I am glad the resources that I have can help in some sort of way. I pray when i become a nurse I can help more parents that are thrown in this ring of fire.
Tonight I am frustrated bc alexus has strep. Kenadie is sick. We cant start treatment until she is somewhat healthy. WEdnesday we do yet another blood draw. I hate to see her get poked. It just really sucks. I am hoping her body takes to the antibiotics and helps her with what she needs.
Alisha,
This is Jill, Mike's wife that you met at 50 penn place. I just wanted to say, thank you so very, very much for referring us to Dr. B. That was so very nice of you to take the time to tell Mike all about him and send us that direction. We love him!!! We are so relieved after the first appointment with him that we have a new, positive direction for our lil Riley. We have you to thank for that! We wish you and your family the very best! May God bless you as you have blessed us by your story and referral.
Thank you!!!
Jill
Tonight that letter boosted me up. I am glad the resources that I have can help in some sort of way. I pray when i become a nurse I can help more parents that are thrown in this ring of fire.
Tonight I am frustrated bc alexus has strep. Kenadie is sick. We cant start treatment until she is somewhat healthy. WEdnesday we do yet another blood draw. I hate to see her get poked. It just really sucks. I am hoping her body takes to the antibiotics and helps her with what she needs.
Sunday, October 3, 2010
Ramblings tonight while at starbucks.
So I am sitting here at starbucks supposed to be studying and figured I might just get on my blog today.
I would like for people to have more understanding of my daughters disease but I am not sure they are open to getting it. I can't just pick up and go anymore like I used to with her. I have to think will she be touching anything, do i need to get her mask, is this something I can wait to do. Its not fun trust me. I would love to go hang out with whoever but that is just not in the cards anymore. I have to ask has your kid had the sneezes in the past two days, snots, fevers, rashes, diahrreha, and the list goes on. HEll i have to do a medical assessment on them pretty much.Good thing I am going to nursing school.
My nerves are at an all time high tonight. Tomorrow we have a phone covo with the dr to see what we do about the medication that kenadie is going to be recieving through iv. I am nervous. Its a change. As soon as I get a rythym of goingn to this doc or that dr all hell breaks loose and we get another change. I am scared that she wont do good on the drug and have crappy side effects like she does with most drugs we try her on now. I dont want to see her get poked all the time either. It really sucks she can't have the port. Plus tomorrow forces me out of denial land. I like to keep my vip membership and i have a feeling an eviction notice is coming. My brain loves to see kenadie beautiful smart and healthy on the exterior bc she does not have that outside markers that she is sick such as a facial deformity or whatever. So if she has her good days your brain drift off to denial land. But when I realize a big dr appt comes my aneixty and panick attacks suck. Especially when i deal with peoples remarks too.
Just the other day someone wanted to know kenadie's beginning story and they asked me from the beginning so i told them how the pregnancy and stuff went. So the comment I got was do you think your body was trying to get rid of her and you tried to hard to keep her?! WTF?! I really thought I heard it all but I guess not. It was a person on the floor where i was taking care of pts. I swear they get so desensitized some times. They need to remember I am a mother and I have feelings like anyone else does. She is my child not specimen or something.
Btw keep your eyes peeled for a resale shop i am going to be opening. It will have childrens clothes, toys, and good stuff in it. all like new or with tags on. All proceeds will be going to flights to cleveland and amino acid treatments.
we also are going to hold a birthday/charity party for kenadie! October 30! Keep your eyes peeled for where and time! You can always be there in spirit.
I would like for people to have more understanding of my daughters disease but I am not sure they are open to getting it. I can't just pick up and go anymore like I used to with her. I have to think will she be touching anything, do i need to get her mask, is this something I can wait to do. Its not fun trust me. I would love to go hang out with whoever but that is just not in the cards anymore. I have to ask has your kid had the sneezes in the past two days, snots, fevers, rashes, diahrreha, and the list goes on. HEll i have to do a medical assessment on them pretty much.Good thing I am going to nursing school.
My nerves are at an all time high tonight. Tomorrow we have a phone covo with the dr to see what we do about the medication that kenadie is going to be recieving through iv. I am nervous. Its a change. As soon as I get a rythym of goingn to this doc or that dr all hell breaks loose and we get another change. I am scared that she wont do good on the drug and have crappy side effects like she does with most drugs we try her on now. I dont want to see her get poked all the time either. It really sucks she can't have the port. Plus tomorrow forces me out of denial land. I like to keep my vip membership and i have a feeling an eviction notice is coming. My brain loves to see kenadie beautiful smart and healthy on the exterior bc she does not have that outside markers that she is sick such as a facial deformity or whatever. So if she has her good days your brain drift off to denial land. But when I realize a big dr appt comes my aneixty and panick attacks suck. Especially when i deal with peoples remarks too.
Just the other day someone wanted to know kenadie's beginning story and they asked me from the beginning so i told them how the pregnancy and stuff went. So the comment I got was do you think your body was trying to get rid of her and you tried to hard to keep her?! WTF?! I really thought I heard it all but I guess not. It was a person on the floor where i was taking care of pts. I swear they get so desensitized some times. They need to remember I am a mother and I have feelings like anyone else does. She is my child not specimen or something.
Btw keep your eyes peeled for a resale shop i am going to be opening. It will have childrens clothes, toys, and good stuff in it. all like new or with tags on. All proceeds will be going to flights to cleveland and amino acid treatments.
we also are going to hold a birthday/charity party for kenadie! October 30! Keep your eyes peeled for where and time! You can always be there in spirit.
Thursday, September 30, 2010
ramblings!
Tonight I am blogging from the phone so bare with me on my spelling and punctuation.
I am finally getting better with the idea of kenadie diagnosis. BTW she has immuno complex deficiency disease, total dysautonomia, mitocondrial disease. feel free to look them up. I will post links on my Facebook on the type of Ivig that she will be getting. the medicine will be given through a sub q method. she can not have a port. with the immune disease she has the port can kill her. so that's out now. we are praying insurance covers it. they don't cover out amino acid therapy. please do me a favor. keep your Google results to yourself unless its a cool treatment option. I prefer to not Google it to death. with kenadie she is pretty rare anyways so I try not to worry more than is needed.
for those that dont know what an immuno disease is basically you have fighters that kill of bacteria n diseases n she does not have any fighters to do so.
the Dr will be talking to us about the adjustments that we need to make tomorrow. I have a couple worksheets that I will scan in so those who are wondering can look.
as of this moment I feel like I could have a big cry any one moment. I don't get it. but we will keep pushing on. sorry I am getting tired. I will update more this weekend.
I am finally getting better with the idea of kenadie diagnosis. BTW she has immuno complex deficiency disease, total dysautonomia, mitocondrial disease. feel free to look them up. I will post links on my Facebook on the type of Ivig that she will be getting. the medicine will be given through a sub q method. she can not have a port. with the immune disease she has the port can kill her. so that's out now. we are praying insurance covers it. they don't cover out amino acid therapy. please do me a favor. keep your Google results to yourself unless its a cool treatment option. I prefer to not Google it to death. with kenadie she is pretty rare anyways so I try not to worry more than is needed.
for those that dont know what an immuno disease is basically you have fighters that kill of bacteria n diseases n she does not have any fighters to do so.
the Dr will be talking to us about the adjustments that we need to make tomorrow. I have a couple worksheets that I will scan in so those who are wondering can look.
as of this moment I feel like I could have a big cry any one moment. I don't get it. but we will keep pushing on. sorry I am getting tired. I will update more this weekend.
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Thursday, September 9, 2010
Strawberry margaritas and doctors!
hello. tonight is an interesting night. sitting here sipping on my strawberry rita reflecting on this clinic that we just got done with. so they were running late with clinic n the pa came in talked to us evaluated her symptoms n her body. the Dr concluded that she is getting worse. he evaluated her bw and thought something was alarming. so they called the immuno doc n he said that he needs to see her ASAP. the doc was on vacation that specializes with her needs so we have to wait till Monday. I am very nervous.
we are staying with a friend that live in Ohio. they have been fantastic. considering the Ronald house was not a good experience yet again. we decided to leave the Ronald early. its nice having someone to joke with.
we are staying with a friend that live in Ohio. they have been fantastic. considering the Ronald house was not a good experience yet again. we decided to leave the Ronald early. its nice having someone to joke with.
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Thursday, August 26, 2010
Post cardiac electrophysiologist!
So before i get started. Some of you might be scratching your head trying to figure out what kind of cardiac doc she went to. She went to one that deals with the electric in the heart. Your sa node is the body's natural pacemaker and it creates the electricity that you have to pump it with. ;) So breif review there.
Well her ekg was as good. So was the bp, temp, and hr. We would have liked to see it higher but she has to show her doctor that she can perform for him at anytime. So dr P came in and said she looks beautiful. He asked her if he could listen to her heart. She said NO! MY HEART! He said well can i listen to your juice? NO MY JUICE. Then he said can i tickle your belly. She said NO MY BELLY HURTS! Lets just say.. she was not into letting him touch her. He listened to her ticker finally after she gets to put the stethescope on her heart. Said it sounded good. A smidge different but nothing crazy! So yeah. Then we sit and have the talk. She is devloping on an amzing level. But unfortunately her brain HATES communicating to the rest of the body. Her highway gets blocked too much. lol. Your brain needs to send the message to the sa node so you can have a beating heart. So if you dont get that message then you dont get that. So he then discussed pacemakers. I have always known since she has been diagnosed that this might be an option for her. My husband and I have thouroughly discussed this also. He said we can do a trial and error. The hard part is kenadie has a rare disease that might not even have a true label for now. With all her bloodwork going ape nuts. So if it gets deemed mitocondrial then she can not get the pacemaker because then it would be a fight with the cells and the machine.One accomplishment we made today is the doctor agreed that kenadie is passing out from her hr going from 140bpm to 40. I know i am n ot crazy just wish people would listen.
If it is her immunodefiencey disease then we can get one. However she is not eligible unless it gets really bad or we can keep status quo until she turns 3. She can not get one right now because they will have to recrack her chest open put the drain tubes and all that stuff in. Her body can't handle that right now. When she turns 3 they can put it in through the artery. So we obviously would prefer that. We now have to do heart monitoring every 3 months for 1 month long. So we can make sure we dont have any deteriation going on that we dont know about.
So much relies on the bloodwork and the testing that is going to be performed in the next couple of weeks. There are some very hard decisions that will be made. I pray for the strength and the comfort and pray for my support system. Being a mother to a special needs child where there is not even 15 in the us like your child is so hard. I will try to type more tomorrow after the pedi.. I am just so tired and emotionally drained.
Well her ekg was as good. So was the bp, temp, and hr. We would have liked to see it higher but she has to show her doctor that she can perform for him at anytime. So dr P came in and said she looks beautiful. He asked her if he could listen to her heart. She said NO! MY HEART! He said well can i listen to your juice? NO MY JUICE. Then he said can i tickle your belly. She said NO MY BELLY HURTS! Lets just say.. she was not into letting him touch her. He listened to her ticker finally after she gets to put the stethescope on her heart. Said it sounded good. A smidge different but nothing crazy! So yeah. Then we sit and have the talk. She is devloping on an amzing level. But unfortunately her brain HATES communicating to the rest of the body. Her highway gets blocked too much. lol. Your brain needs to send the message to the sa node so you can have a beating heart. So if you dont get that message then you dont get that. So he then discussed pacemakers. I have always known since she has been diagnosed that this might be an option for her. My husband and I have thouroughly discussed this also. He said we can do a trial and error. The hard part is kenadie has a rare disease that might not even have a true label for now. With all her bloodwork going ape nuts. So if it gets deemed mitocondrial then she can not get the pacemaker because then it would be a fight with the cells and the machine.One accomplishment we made today is the doctor agreed that kenadie is passing out from her hr going from 140bpm to 40. I know i am n ot crazy just wish people would listen.
If it is her immunodefiencey disease then we can get one. However she is not eligible unless it gets really bad or we can keep status quo until she turns 3. She can not get one right now because they will have to recrack her chest open put the drain tubes and all that stuff in. Her body can't handle that right now. When she turns 3 they can put it in through the artery. So we obviously would prefer that. We now have to do heart monitoring every 3 months for 1 month long. So we can make sure we dont have any deteriation going on that we dont know about.
So much relies on the bloodwork and the testing that is going to be performed in the next couple of weeks. There are some very hard decisions that will be made. I pray for the strength and the comfort and pray for my support system. Being a mother to a special needs child where there is not even 15 in the us like your child is so hard. I will try to type more tomorrow after the pedi.. I am just so tired and emotionally drained.
Tuesday, August 17, 2010
Well Crap!
I typed a blog post last week and somehow it was not on there. :( Guess my laptop was being a pissy little thing. ugh.
So in the past MONTH..ALOT has went on. Lets update on my other two princess before I update on the DIVA!
Genesis: She tested for early 1st grade entrance and missed it by 4 points. :( But her teacher said she is going to use her as a leader and will get some 1st grade material to keep her challenged. Her teacher is ms M. She sounds really nice. Then my daughter got attacked by a little boy at her learning center. One of the rare times I dont pick her up and her dad does this happens. He of course did not ask any questions so i blew up that phone to see what the heck happened. My daughter knows that momma will eat her lunch (figure of speech) if she misbehaves. So I asked and was told the little boy has a known anger problem and got mad at the teacher and proceeded to turn around and punch my child on the orbital bone. He was asked why and he said because she is white and a girl. WTF?!?!@?!?! Guess i should be glad I did not pick her up because knowing me and my mouth I would not have had it shut. I would have went off! This little boy is 2 yrs older than her too. Just gets me that they knew he had these tendencies and only suspended him for 1 day. They can not descriminate against medically challenged children. Okay. Wth.. He PUNCHED her! So needless to say I am not letting her go back there as she told the therapist that councels us for family counceling that she does not feel safe. Veiw it how ya want but she is not going back. One thing I can provide for her is that much. So yea. Tonight she lost her first 2 teeth! TWO! OMG my baby is growing right up on me! She has the total redneck missing teeth going on right now! lol. I should put her in overalls mess her hair up and pretend their was a tornado and take her picture! LOL!. So yep. Oh I also am enrolling her in soccer tomorrow. She is so excited to be playing. If you guys want to know how it goes I will post about it! :)
Alexus: She is going to be 4 in a couple weeks. I can't believe it is around the corner. She is so excited about her birthday this year. We have it marked on the calendar and everyday we mark another off. We are also moving her to a new center on thursday and I have never seen this child so excited! She is getting her afo's for her legs soon to help with her muscles. We are also done with therapy for her sensory issues. We are hoping to get recertified as it helped ALOT! She loves doing anything genesis does right now.
A side note about her birthday coming up. It is a bit emotional as I am having it at the same facitility where I announced to some people that i was pregnant with Angel Robert. The exact day is the same I found out too. Yes for those that are scratching their heads. I am a dates person. ;) Lately its really getting me too. I am not sure if it is because of all the stuff that we are going over in school or what. His loss date is coming soon too.. So i ususally go through a few boxes of kleenexs then. I love seeing my children playing outside and wish i could see him playing with them. I see other little boys with their daddy's at school where the girls go or just places and I try to keep it in check but some days nope. The girls just had their pictures done and I feel such an emptiness there. I know my family is not complete either. One of these days it will be. Just not right now! :)
My mom had a knee replacement done at the beginning of the month so I am missing a big huge part of my support system. She really means the world to me. My fil is awesome too but just not momma.. kwim.
Where to begin with kenadie?! Hmmm.. well I was going to post about her leg biopsy stuff. But lets jump to the big guns. Kenadie had some bw done 1 wk ago this past friday and we found out she has an immunodeficency disease. So for those wondering her immune system army is almost gone. Something in her body is eating it up and spitting it out. lol. On a serious note.. There is not a cure. Her heart knocks her out for alot of the treatments. We do more bw tomorrow to help us find out what else is going on with her.
Post will be continued.. gotta get kids to bed.
So in the past MONTH..ALOT has went on. Lets update on my other two princess before I update on the DIVA!
Genesis: She tested for early 1st grade entrance and missed it by 4 points. :( But her teacher said she is going to use her as a leader and will get some 1st grade material to keep her challenged. Her teacher is ms M. She sounds really nice. Then my daughter got attacked by a little boy at her learning center. One of the rare times I dont pick her up and her dad does this happens. He of course did not ask any questions so i blew up that phone to see what the heck happened. My daughter knows that momma will eat her lunch (figure of speech) if she misbehaves. So I asked and was told the little boy has a known anger problem and got mad at the teacher and proceeded to turn around and punch my child on the orbital bone. He was asked why and he said because she is white and a girl. WTF?!?!@?!?! Guess i should be glad I did not pick her up because knowing me and my mouth I would not have had it shut. I would have went off! This little boy is 2 yrs older than her too. Just gets me that they knew he had these tendencies and only suspended him for 1 day. They can not descriminate against medically challenged children. Okay. Wth.. He PUNCHED her! So needless to say I am not letting her go back there as she told the therapist that councels us for family counceling that she does not feel safe. Veiw it how ya want but she is not going back. One thing I can provide for her is that much. So yea. Tonight she lost her first 2 teeth! TWO! OMG my baby is growing right up on me! She has the total redneck missing teeth going on right now! lol. I should put her in overalls mess her hair up and pretend their was a tornado and take her picture! LOL!. So yep. Oh I also am enrolling her in soccer tomorrow. She is so excited to be playing. If you guys want to know how it goes I will post about it! :)
Alexus: She is going to be 4 in a couple weeks. I can't believe it is around the corner. She is so excited about her birthday this year. We have it marked on the calendar and everyday we mark another off. We are also moving her to a new center on thursday and I have never seen this child so excited! She is getting her afo's for her legs soon to help with her muscles. We are also done with therapy for her sensory issues. We are hoping to get recertified as it helped ALOT! She loves doing anything genesis does right now.
A side note about her birthday coming up. It is a bit emotional as I am having it at the same facitility where I announced to some people that i was pregnant with Angel Robert. The exact day is the same I found out too. Yes for those that are scratching their heads. I am a dates person. ;) Lately its really getting me too. I am not sure if it is because of all the stuff that we are going over in school or what. His loss date is coming soon too.. So i ususally go through a few boxes of kleenexs then. I love seeing my children playing outside and wish i could see him playing with them. I see other little boys with their daddy's at school where the girls go or just places and I try to keep it in check but some days nope. The girls just had their pictures done and I feel such an emptiness there. I know my family is not complete either. One of these days it will be. Just not right now! :)
My mom had a knee replacement done at the beginning of the month so I am missing a big huge part of my support system. She really means the world to me. My fil is awesome too but just not momma.. kwim.
Where to begin with kenadie?! Hmmm.. well I was going to post about her leg biopsy stuff. But lets jump to the big guns. Kenadie had some bw done 1 wk ago this past friday and we found out she has an immunodeficency disease. So for those wondering her immune system army is almost gone. Something in her body is eating it up and spitting it out. lol. On a serious note.. There is not a cure. Her heart knocks her out for alot of the treatments. We do more bw tomorrow to help us find out what else is going on with her.
Post will be continued.. gotta get kids to bed.
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