So miss MacKelty had her brain tumor taken out almost 2 weeks ago. The surgery was uneventful(a very good thing!). I cant explain things other than priesthood blessings and miracles were poured out upon us.
Everything remained intact for Kel. Even though the docs were telling me she could possibly end up in a bad situation....like having to relearn how to walk and eat and do everything we've worked so hard to do in the past 2 years. I mean, my darling baby girl didnt walk until she was almost 3 years old and that was only with the help of a walker. So I consider myself to be a recipient of more than one miracle in my lifetime. Just with MacKelty there have too many to even count.
So, she came out of surgery without the vent! Halleluja! The art lines were pulled and the only thing attached to her were Ivs and the tele monitors. It was awesome! Still scary to see her right after surgery though. But it was such a relief to see no vent. I didnt get too crazy at the hospital but you can ask Jay about my meltdown later that night. The only thing that made me nervous was that the RN(i hated her by the way....she was dumb, and yes, I was scrutinizing her care) had to manually hold her neck up to keep her airway open because she had some strider and was a little floppy. Wow, Im really having to hold back how much I want to slander that dumb nurse (now we had a situation the next day in PICU that I wanted to scream at her about. thats why).
But other than the scary PICU we had a good time in the hospital, believe it or not. Kel was just a little confused when she got home. She put her cup in the garbage rather than putting it in the sink where it goes. She still needs a little reminding about a couple things but shes walking and talking. Even running and jumping. You would never know she just had brain surgery almost 2 weeks ago.....except for the hideous baseball like stitching on the back of her head :)
Thanks to everyone that has helped us through the last 3 weeks. I truly appreciate everyones concern and involvement. Ive never had a ward rally around us and show complete strangers(us) so much love and support. Unfortunately it wasnt our own ward it was my moms but it was truly awesome to see.
Tuesday, October 11, 2011
Saturday, September 24, 2011
raw and real
The goal of this particular post is to give a raw and real accounting of how a young mother(me) is feeling about her little daughter having a tumor resected from her brain in the next week.
Honestly, Im completely destraught and devastated. Its true, Ive been through this before but never with so much time to wallow and stew in my fears. The first time Kel had a brain tumor it was emergency surgery. The neurosurgeon gave her just enough time to get prophalactic antibiotics and a course of major inflamatories to reduce swelling before diving in and hoping she would survive. This time Ive had a month to stew and overthink things.
The weird thing is that Im still surviving. Still going to work....a major stress in my life and usually the first thing to push me over the edge. Still waking up every day, even though there have been days when I didnt want to. Still pushing on...because no matter how much I just want to spend every waking moment just holding Kel(like she would let me) other people depend on me. I cant let this disrupt everything around me and I have a responsibility to keep my sons life together as well. I know I cant fall off(the edge) because Gage needs me too. I guess he's most of the reason Im functioning as well as I am. Little did I know little Gage would be one of my rocks. In turn I have to be his rock too.
I dont think Ive ever bawled so much in my life. In the car alone those little thoughts pop into my head like: "you only have 5 days left of your daughter, she could die in 5 days." Or the thought of seeing her on total life support again with nurses, resp. therapists and doctors surrounding her puts a huge lump in my throat and makes my eyes well. I guess its more the thought of seeing her hurt so badly that really gets to me. Once youve seen your child with her head cut open and drains coming out of her brain it never leaves you. Its seared into my memory and I will never forget what kind of despair and helplessness that completely encompassed me at that moment in time. I dont want to see that again but I know I have too.
Its honestly the vent(breathing machine) that scares me the most. Last time she would breathe on top of the vent and then let the vent do the work for her. In medicine that meant she wasnt completely ready to be extabated(the breathing tubes pulled out). But they did it anyway. The docs know what theyre doing but Im just really nervous about everything.
Im nervous and scared because I know too much. Working where I do Ive seen too many things go bad. Too many little things turn into big things. And things that were supposed to go according to plan dont, and people die. People die. Doctors arent god and they cant save everyone. Im firm in the thought that when the Lord wants to take somebody he will. And he has....even though it didnt seem like they were sick enough to die or it didnt seem like it was their time. Children die too. Ive never watched a child die, and I dont want next Tuesday to be the time when I watch my own slip away.
Its just been hard having more than a month to stew. There have been blessings that have come from the situation. My faith is firmer, we're leaving our house and headed for a new life with none of the baggage or reprocussions from the last surgery, we'll hopefully be able to make smarter choices and work more on education for Jay and I, my heart is softer, and Ive learned how to be a little more humble.
I would be lying to you if I said I was happy and spiritual right now. Im not happy about my daughters life being handed to some doctors up at Primary Childrens on Tuesday. But this has been a spiritual experience. I live my life for my kids. And to be so close to letting one of them go is hard to choke down. It flat out sucks. I was angry for a while, then I felt defeated, depressed, and a level of sadness no one can understand. Its actually kind of amazing to feel such a deep deep sorrow. I carry it around with me everywhere I go. A nagging light in the distance that somehow means emptyness to me right now. But at the same time I still feel a glimmer of hope that things will turn out for the best. Must be the eternal optimist in me. The realist in me is preparing me for the worst at the same time though.
On the realism note, the neurosurgeon has told us that hes optimistic he'll get a GTR(gross total resection , which means he should be able to resect or take out the whole tumor without disturbing good brain tissue). Dr. Kestle seems to be optimistic about surgery. According to him there shouldnt be alot of "effects" from it either. Ive noticed the docs up there like to focus on the positive and skirt around what could happen just from cutting into the brain. I wont list the possible outcomes from surgery because I tend to focus on them and Im trying to be more positive. I just hope she survives surgery and the critical 24 hours after. Then itll be smoothe sailing for me.
If you havent figured out by now Im worried about Kel just staying alive through surgery. Im worried that something could go wrong and she could code and die. Im worried about these things because there are significant bleeding risks cutting into the brain or any part of the head for that matter. Its just so vascular and she could have to have major amounts of blood pumped back into her. Last time, if Im not mistaken, they replaced her blood volume twice through the procedure. Im worried about anesthesia too. Its going to be a long surgery and the longer shes down the more things can go wrong. I know all too well the miracles of modern science and how well theyre(the OR staff)is prepared to handle any situation. Its a miracle just to have a hospital and staff of that calibur taking care of Kel through the whole thing. Also.....if you havent figured out by now, Im having a really hard time not being able to control this.
I guess the thing thats bringing me the most sadness is the thought that Kels days may be numbered. Its always there, hanging out in the back of my mind. A time limit to things. A time limit with my daughter. Its a very real possiblility and it majorly sucks. Ive only mentioned this fear to Jay when my kind husband is listening to me in the dark at bed time. Im glad hes optimistic and pulls me up in my times of weakness.
So in conclusion to this very long blog post. Im sad, full of sorrow and worry. I just cant say Im totally hopeful about things. Im scared.
Honestly, Im completely destraught and devastated. Its true, Ive been through this before but never with so much time to wallow and stew in my fears. The first time Kel had a brain tumor it was emergency surgery. The neurosurgeon gave her just enough time to get prophalactic antibiotics and a course of major inflamatories to reduce swelling before diving in and hoping she would survive. This time Ive had a month to stew and overthink things.
The weird thing is that Im still surviving. Still going to work....a major stress in my life and usually the first thing to push me over the edge. Still waking up every day, even though there have been days when I didnt want to. Still pushing on...because no matter how much I just want to spend every waking moment just holding Kel(like she would let me) other people depend on me. I cant let this disrupt everything around me and I have a responsibility to keep my sons life together as well. I know I cant fall off(the edge) because Gage needs me too. I guess he's most of the reason Im functioning as well as I am. Little did I know little Gage would be one of my rocks. In turn I have to be his rock too.
I dont think Ive ever bawled so much in my life. In the car alone those little thoughts pop into my head like: "you only have 5 days left of your daughter, she could die in 5 days." Or the thought of seeing her on total life support again with nurses, resp. therapists and doctors surrounding her puts a huge lump in my throat and makes my eyes well. I guess its more the thought of seeing her hurt so badly that really gets to me. Once youve seen your child with her head cut open and drains coming out of her brain it never leaves you. Its seared into my memory and I will never forget what kind of despair and helplessness that completely encompassed me at that moment in time. I dont want to see that again but I know I have too.
Its honestly the vent(breathing machine) that scares me the most. Last time she would breathe on top of the vent and then let the vent do the work for her. In medicine that meant she wasnt completely ready to be extabated(the breathing tubes pulled out). But they did it anyway. The docs know what theyre doing but Im just really nervous about everything.
Im nervous and scared because I know too much. Working where I do Ive seen too many things go bad. Too many little things turn into big things. And things that were supposed to go according to plan dont, and people die. People die. Doctors arent god and they cant save everyone. Im firm in the thought that when the Lord wants to take somebody he will. And he has....even though it didnt seem like they were sick enough to die or it didnt seem like it was their time. Children die too. Ive never watched a child die, and I dont want next Tuesday to be the time when I watch my own slip away.
Its just been hard having more than a month to stew. There have been blessings that have come from the situation. My faith is firmer, we're leaving our house and headed for a new life with none of the baggage or reprocussions from the last surgery, we'll hopefully be able to make smarter choices and work more on education for Jay and I, my heart is softer, and Ive learned how to be a little more humble.
I would be lying to you if I said I was happy and spiritual right now. Im not happy about my daughters life being handed to some doctors up at Primary Childrens on Tuesday. But this has been a spiritual experience. I live my life for my kids. And to be so close to letting one of them go is hard to choke down. It flat out sucks. I was angry for a while, then I felt defeated, depressed, and a level of sadness no one can understand. Its actually kind of amazing to feel such a deep deep sorrow. I carry it around with me everywhere I go. A nagging light in the distance that somehow means emptyness to me right now. But at the same time I still feel a glimmer of hope that things will turn out for the best. Must be the eternal optimist in me. The realist in me is preparing me for the worst at the same time though.
On the realism note, the neurosurgeon has told us that hes optimistic he'll get a GTR(gross total resection , which means he should be able to resect or take out the whole tumor without disturbing good brain tissue). Dr. Kestle seems to be optimistic about surgery. According to him there shouldnt be alot of "effects" from it either. Ive noticed the docs up there like to focus on the positive and skirt around what could happen just from cutting into the brain. I wont list the possible outcomes from surgery because I tend to focus on them and Im trying to be more positive. I just hope she survives surgery and the critical 24 hours after. Then itll be smoothe sailing for me.
If you havent figured out by now Im worried about Kel just staying alive through surgery. Im worried that something could go wrong and she could code and die. Im worried about these things because there are significant bleeding risks cutting into the brain or any part of the head for that matter. Its just so vascular and she could have to have major amounts of blood pumped back into her. Last time, if Im not mistaken, they replaced her blood volume twice through the procedure. Im worried about anesthesia too. Its going to be a long surgery and the longer shes down the more things can go wrong. I know all too well the miracles of modern science and how well theyre(the OR staff)is prepared to handle any situation. Its a miracle just to have a hospital and staff of that calibur taking care of Kel through the whole thing. Also.....if you havent figured out by now, Im having a really hard time not being able to control this.
I guess the thing thats bringing me the most sadness is the thought that Kels days may be numbered. Its always there, hanging out in the back of my mind. A time limit to things. A time limit with my daughter. Its a very real possiblility and it majorly sucks. Ive only mentioned this fear to Jay when my kind husband is listening to me in the dark at bed time. Im glad hes optimistic and pulls me up in my times of weakness.
So in conclusion to this very long blog post. Im sad, full of sorrow and worry. I just cant say Im totally hopeful about things. Im scared.
Wednesday, September 7, 2011
YUP, its him. its superman!
Well, blog readers...its true. I married Superman. I was intentionally looking more for the batman type with all his rubber pants wearing-sidekick in his scivies goodness but nope. Superman flew into the picture......with his bright red scivies and tights!
I dont know where Id be if "Superman" wasnt here to tend to my every whim. Its true, I think I will go home after this horribly long night at work and make him rub my feet with some sort of his Supermanish powers. Powers are so much more awesome than a crappy utility belt. Take that dumb Batman....what you got in your utility belt for that? A pedegg? hmmmm that could work. But then again......
Ok, so back to the point. I really did marry Superman and if you dont believe me ask him yourself. He has now even started referring to himself as Superman and acts like it too. I have asked on numerous an occasion for him to wear the tights but apparently even Superman is too manly to wear his red tights with blue undies. Geez, all I wanna do is see those glorious man thighs in some tights! When?! When?! When will I get the tights?!
Not even the dreaded kryptonite(raisins in cookies and almost anywhere else) could keep Superman down! Not even his malfunctioning gall bladder! This is how I know my husband had been mutated and exposed to something radioactive(probly at work with the stinky people and their radioactivity) because 2 days after having an organ removed he was rummaging around under the house to turn the water main off. I know, hes a nut not an alien. There has to be another explanation for his Supermanyness. He was not born on Krypton 'cuz our children are non-supers....and neither am I.
well, the investigation will go on. I will find out who mutated my husband into being Superman........even if he wont put the tights on.
I dont know where Id be if "Superman" wasnt here to tend to my every whim. Its true, I think I will go home after this horribly long night at work and make him rub my feet with some sort of his Supermanish powers. Powers are so much more awesome than a crappy utility belt. Take that dumb Batman....what you got in your utility belt for that? A pedegg? hmmmm that could work. But then again......
Ok, so back to the point. I really did marry Superman and if you dont believe me ask him yourself. He has now even started referring to himself as Superman and acts like it too. I have asked on numerous an occasion for him to wear the tights but apparently even Superman is too manly to wear his red tights with blue undies. Geez, all I wanna do is see those glorious man thighs in some tights! When?! When?! When will I get the tights?!
Not even the dreaded kryptonite(raisins in cookies and almost anywhere else) could keep Superman down! Not even his malfunctioning gall bladder! This is how I know my husband had been mutated and exposed to something radioactive(probly at work with the stinky people and their radioactivity) because 2 days after having an organ removed he was rummaging around under the house to turn the water main off. I know, hes a nut not an alien. There has to be another explanation for his Supermanyness. He was not born on Krypton 'cuz our children are non-supers....and neither am I.
well, the investigation will go on. I will find out who mutated my husband into being Superman........even if he wont put the tights on.
Friday, August 26, 2011
Ok, news on the Kelty front: surgery will be September 26th at 0600. Im relieved to say the least. When the neurosurgeon called (he, himself called, not his lackee nurse :) he said that he did not think there would be any need for chemotherapy and that he was very confident surgery would take care of the "thing". YAY!!!
So she will need to stay in the hospital for about a week again and that will be that. I was literally outside my gourd not knowing what the tumor board was going to do......as some of you may have noticed from my last post that got deleted.....sorry if it alarmed anyone. I wrote it in a fit neurosis. Yes, my dear friends, I.AM.COMPLETELY.NEUROTIC.....at times. Annnnnd this is my blog and im not going to apologize for it.
Anywho, I think Jay and I have come up with a plan to be able to take care of Kel. Something drastic has to be done. Well, this is hard to explain clearly. Kels medical needs are becoming increasingly EXPENSIVE!!!!!....and we cannot afford everything we have and be able to pay for everything she needs. And guess what, her medical needs come before other things that must be purchased. For example, I cant let her go without physical therapy just for us to live in the crap shack weve been residing in for the past couple of years.....besides we dont really like the "crap shack" but its ours.Like we have a mortgage on it and I painted the walls ours. But oh well, it can go and its not hurting my feelings. So we will be moving.....eventually. Back to renting....ughhhh. I am looking forward to things like if the water heater goes out we dont have to replace it......we just sit around and let the landlord fix it. I also like the fact that renting a place is going to be alot cheaper for us and we might actually have some time to do something(like maybe a small vacation) here next summer. Instead of imaginary vacations in between wiping someones rear end at work.
All in all, since I have a plan in place for Kel I can now focus on being only semi-neurotic. :)
Friday, July 29, 2011
nothing new, again.
.......nothing new, again.
I guess Im just having alot of blog-apathy or something like that. I think Im too stressed about everything going on in my life that I wont let my mind wander like it used to. Nah, who am I kidding?! My mind constantly wanders.....just ask Jay. Im constantly unloading the ever present reel of whats going on in Aerial-land(what I refer to as my mind or psyche) to him. And what a wonderful husband I might add for doing that. At least, let me repeat, at least 3 times a week I change what I would like to do with my life and have to run it by Jay to see what he thinks. And his fervent, fervent as he always is, answer is always: "you'd be good at that" or "if thats what you really want to do". See, what a good hubby!
But, life has not been kind to us lately.....let me rephrase, for some reason I or we(Jay and I) are being tested....again. You would think the Lord might let us have a break. I guess not.
OK, get ready for some pre-existent horn tooting! My personal opinion on this whole being tested more and more and more lately is because I was stubborn in the pre-existence and told the Lord "let me take those trials, I can handle them. I'll prove to you I can handle them." Maybe I should have kept my big mouth shut or I should just breathe and try to live through this.
One of the major things Im struggling with is my daughter. On our last MRI there was something growing in her brain again. We cant tell if its scar tissue or another tumor. Ummm, I wont go into it much further because it makes my chest hurt and I cant bear to think that something is going to happen again. I honestly just cant bear it right now.
Weve had a major financial burden because of Kels medical expenses as you can imagine. Which has made Jay keep his extra 24 hours a week on top of his normal 40 hours a week just so we can survive now. Jays started getting sick now, there is something wrong with my superman and I am deathly worried.
I wont blubber about all my trials but Im just saying that with so many other things going on around me, not to mention being pregnant on top of this, its hard to think of anything else.
Call it blog-apathy or just plain old survival mode. Sorry for not being more jovial and having more fun blog posts.
Can I just say, being preggo is nice but Im getting to the point where its sooooooo hot! Icky hot!
I guess Im just having alot of blog-apathy or something like that. I think Im too stressed about everything going on in my life that I wont let my mind wander like it used to. Nah, who am I kidding?! My mind constantly wanders.....just ask Jay. Im constantly unloading the ever present reel of whats going on in Aerial-land(what I refer to as my mind or psyche) to him. And what a wonderful husband I might add for doing that. At least, let me repeat, at least 3 times a week I change what I would like to do with my life and have to run it by Jay to see what he thinks. And his fervent, fervent as he always is, answer is always: "you'd be good at that" or "if thats what you really want to do". See, what a good hubby!
But, life has not been kind to us lately.....let me rephrase, for some reason I or we(Jay and I) are being tested....again. You would think the Lord might let us have a break. I guess not.
OK, get ready for some pre-existent horn tooting! My personal opinion on this whole being tested more and more and more lately is because I was stubborn in the pre-existence and told the Lord "let me take those trials, I can handle them. I'll prove to you I can handle them." Maybe I should have kept my big mouth shut or I should just breathe and try to live through this.
One of the major things Im struggling with is my daughter. On our last MRI there was something growing in her brain again. We cant tell if its scar tissue or another tumor. Ummm, I wont go into it much further because it makes my chest hurt and I cant bear to think that something is going to happen again. I honestly just cant bear it right now.
Weve had a major financial burden because of Kels medical expenses as you can imagine. Which has made Jay keep his extra 24 hours a week on top of his normal 40 hours a week just so we can survive now. Jays started getting sick now, there is something wrong with my superman and I am deathly worried.
I wont blubber about all my trials but Im just saying that with so many other things going on around me, not to mention being pregnant on top of this, its hard to think of anything else.
Call it blog-apathy or just plain old survival mode. Sorry for not being more jovial and having more fun blog posts.
Can I just say, being preggo is nice but Im getting to the point where its sooooooo hot! Icky hot!
Saturday, June 18, 2011
whats new
Sorry for not blogging so much lately. I guess I just dont have alot to say.
I guess we could update about the preggo-ness going on here. Im 16 weeks along now. Im finally not nauseated into an oblivion but Im still exhausted. So sleepy all the time. I feel like I should just lay my head down and go to sleep right on the desk. Yup, right here next to the call light(im at work of course).
We still dont know what the baby is......although we have a guess. I havent bought much of anything yet, just some new bottles and a pack of diapers, new binkis and thats about it.
Im just so flippin tired. I guess I'll get blogging again here more consistently......sorry, mybad
I guess we could update about the preggo-ness going on here. Im 16 weeks along now. Im finally not nauseated into an oblivion but Im still exhausted. So sleepy all the time. I feel like I should just lay my head down and go to sleep right on the desk. Yup, right here next to the call light(im at work of course).
We still dont know what the baby is......although we have a guess. I havent bought much of anything yet, just some new bottles and a pack of diapers, new binkis and thats about it.
Im just so flippin tired. I guess I'll get blogging again here more consistently......sorry, mybad
Tuesday, May 3, 2011
tired tired tired
Well, havent posted for a while. I guess I just havent had much to say lately with all the sleeping going on here. I was hoping this exhausted phase of pregnancy would be over by now.....nope.....still completely tired. Not to mention Ive been excrutiatingly nauseated for weeks now. Its making it difficult to do my work 'cause i usually end up barfing from all the gastly smells in the hospital. I have now barfed(like heaving my guts out!) 3 times from emptying emesis basins or bed pans. But you can bet Im gagging 100% of the time I have to do that......sorry if thats tmi.
Good news! Theres just one baby! We thought there might be more than one for a little bit.
My darling Gage had a b-day this past weekend. It was fun and he had a good time. What a wonderful blessing he is to me. My kids are my joy. Geez, how they grow up so fast!
Sorry so short.....too tired to say more
Good news! Theres just one baby! We thought there might be more than one for a little bit.
My darling Gage had a b-day this past weekend. It was fun and he had a good time. What a wonderful blessing he is to me. My kids are my joy. Geez, how they grow up so fast!
Sorry so short.....too tired to say more
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