The Rollercoaster Ride of SCIDS
Monday, January 31, 2005
i am sick again so I will not be able to stay with Tyty. I must of caught what he had. We did a chest x ray cuz of the adno and because he has alot of snot and seemed labored in his breathing.
i dont feel good at all but I am gonna try and get things caught up while i'm in town then i will pick up the kids and i dont where i'll go tomorrow.
im so tired. i can only imagine how he feels.
Sunday, January 30, 2005
its five am and ive spent the last few hours looking at the ceiling crying, begging for god to bring tyler health. As I lay there Brandon jumps in between bob and I. I cuddled him up like a baby and with his big, beautiful brown eyes he looked at me and said, "He'll be ok, right momma?" We are gonna hope. I said just hope. I wear a yellow bracelet with Livestrong on it and he asked if he could have one. I said of course I have one extra one. As we were driving to get Bob he started crying I said what is wrong he says I left my bracelet to help tyty at home. It broke my heart. I told him the bracelet is just a sign that he is supporting tyty it is his heart that is the biggest support and that is always with you. I talked to them all the way over as I have to head back to Iowa City and I told them I know life is hard but we will get through this. I said we did this for you too Dylan, I would do this for all of you if you were sick. It was a very, long, heartfelt talk, and by the end I think they were closer to understanding, that and a bribe of getting them the DVD Aqua team hunger force. What do I expect? They are kids.
One of the docs informed me that we probably wont get the result I want and the outcome wont be like Dylan. It ripped me apart but my mom set me straight. She told me, How many times did they say that about Dylan? True. If I had listened to all the doctors he would be in an institution right now. They told me he had something wrong with him mentally that he couldn't learn, mentally retarded they said. I kept telling them he has it he just can't express it. I went to doctor after doctor and finally I found it in a speech therapist named Joyce. She seen it. She put him behind a glass two way mirror and she watched him and she couldn't believe the way he thought things out and how he played and interacted with the toys. She agreed to help me. I spent day and night with Dylan, taping my voice and playing it overnight in hopes he would pick up the words, we went to see Joyce three times a week. Together we did it. I'll never forget the first day his words came out so clear. At speech you had the option of staying or leaving, I always stayed so I could pick up new tricks to enforce at home. Well, one day I needed groceries so I was gonna drop him off. They called his name and I was gonna drop him off at the door and as I went to leave he said, no momma you stay. Joyce and I looked at each other and I about cried, and I also put my butt right in that room with him. lol From then on it was just allowing him to learn as most three year olds do. It took him several years and he still is lagging behind in some areas, but he is in a regular school, plays as a normal child would. With Dylan I seen it. I seen he had something in there. He just couldn't express it.
I see it with Tyler too. I've noticed something with him though. Before he was so puffy from the steroids he couldn't move, but as the fluid came off little by little all you had to do was show him something and he would do it. Before he couldn't shake his head no, he was too puffy, now he can. It's not that he can't crawl or walk or wont its that the medication, and the trauma of this illness wont let him. So I repeat now what I said to the doctor. "Once we get him off these meds he will flourish I know it." Will he need extra help? hell yeah, will he be behind? Of course he has been in a hospital all of his life. Will he catch up? YES. Because in his eyes, and in his actions I see a child wanting to bust out of this disease and live like a child should. I look in his eyes and I see something there. Just like I did with Dylan.
Bob and I have been pretty scared and we're torn. It's hard to be away from the kids. Whichever way it is at the time. Right now with one car we have no choice but to both be up there or the other person would not have a chance for food or a place to sleep.
But my bio dad saked if one of us could come back everynight. I wish we could but the last time I did that I spent more money on gas then a hotel room would cost.
When I picked up the boys yesterday they ran to me and cried, but they had a great time playing at pee mas with their cousins who they rarely see and she took good care of them. She spoiled them, and she helped me tons by doing their laundry. Took an hour off my work load.
Yesterday was hectic, we got up at four am got ready headed back to Burlington dropped Bob off at work. Come to find out he was hours early so we drove around some and then he eventually went to work at 10:30. I get home at 11:30, start some laundry, (I did 10 loads yesterday), went thru the mail, separated the bills, paid the bills, got online and paid credit card bills, packed up more of Tyler's things, set out a weeks worth of clothes for the boys, then drove to Galesburg, got Ty's prescritions (732.00) and picked up the kids. Drove to Monmouth where I needed to get stuff for their lunches shopping with two kids is not advised. Dylan picks up whatever he wants and always gets two of everything. lol so I spent 80 dollars I didn't have there, but they needed stuff to eat this week. so now the car has all our Iowa city bags, all their bags from staying at grandmas, grocery bags, loose clothes, shoes, and it is snowing like crazy and I get to carry all of this in by myself. I put away groceries, continued laundry, fixed dinner, set out the rest of their clothes, starting packing away Bob and I's clothes, put ty's prescriptions in their order. Packed more stuff we needed, then spent two hours on homework with D. Took out the trash and low and behold it was 8:30 time to go get Bob. Back to Iowa City as we are needed to be up there. I'm gonna miss my boys. I miss them already.
I dont know what we are gonna do about a place to stay, we cant afford the mac house or a hotel. We found this cheap motel for 33 a night. which is only 13 more than the mac house and you get a tv and they clean up after ya plus you cant eat in your room, but seeing how we cant afford mac house we obviously cant afford a motel either. I was gonna stay in the room but this broken tailbone cant handle the cots. I have trouble enough on a bed. We are running so low right now. I dont know how we will do this. I just keeping hoping something will fall out of the sky and fix everything.
Our PA has taken a back seat it seems. The doctors are dealing with us more. He is acting so weird. He knows Tyler almost as good as us. Me, Bob then Steve. Well, the other day I said his running nose and congestion is keeping him from eating (which lead to the nasal wash which lead to us finding out he had another infection) as Steve knows he has this alot. I said he has had this problem for awhile now. and he says so we hear. WHAT? so we hear, so you have seen it for weeks on end. what the hell are you talking about so you hear? I dont know. It is like the twilight zone up there. New nurses, new rules, new docs, new procedures. Nothing in that place stays the same I guess it is sad we've been there to see the many turnovers it always takes.
I guess I'm just rambling, I'm afraid if I stop typing I will start crying and never stop.
Tyler's smile is literally running through my mind constantly.
D came up to me and said Im gonna really miss you it will hurt my heart to not be with you. It hurt my heart hearing that.
You know that dolly the sheep clone thing? well, I support it. I wish I could be craddling Tyler, watching D play video games, and holding Brando as he tells me his many tall tales all at the same time. I dont want to be cloned to get all my work done, just so I can be with all my kids at once.
I'm crying over this keyboard in HOPE that Tyler can overcome this. I'm begging, pleading, praying he will beat this. No one said life was fair but no one said it was gonna be down right cruel either.
My hands are still on the wheel but I feel like I'm gonna drift to sleep and let go. The only thing keeping them on right now is looking in the rear view mirror and seeing my three boys.
Hope and Strength. This disease has bared us all. All we have left is Hope and Strength. Let it be all we need.
Saturday, January 29, 2005
tyler now has adnovirus. there is nothing they can do for this. Tyler now has three infections. *tears* i had to leave my baby to get the boys todya so my little boy is all by himself today but i havent seen the boys in a week no matter where i am i feel im in the wrong place. *tears* bob is breaking down im trying to be strong but *tears* things are so bad right now health, fear, scare, family split up and will be for awhile, no money, nowhere to stay *tears* what are we going to do *tears*
Wednesday, January 26, 2005
Well, turns out ty has two infections one of them being staff, gram negative, gram positive. we're gonna be here for awhile. we might have to take the kids out of school again. we have no place to stay, no money. i dont know what we are gonna do. im scared
Monday, January 24, 2005
Well, we just got home from taking the kids to Kewanee after coming home from Iowa City. My dad said he had an insurance adjuster looking at his tub tomorrow so he couldn't watch them. Though the ins guy was coming while they had school (he just didnt want to watch them) he said it would be too hard so we had to pull the kids out of school for a week so we could take them to Bob's moms.
Last week Bob's co manager took the whole week off to help his wife well Bob ask to take his vacation this week to be with Ty (he does have FMLA) and all Steve E. gave him was until Thurs off. So now we have to figure out how we will do this. I n eed a car, we have no money for a hotel, my tail bone can't handle the chairs we will have to sleep in.
Turns out we called his nurse and he was fussy so we were gonna go back up but after his blood pre meds he calmed down so we will head out of here at 4:30 a.m. tomorrow in hopes we will be in time to talk to the docs as we just found out his blood cultures grew a gram Negative bacterial infection. SERIOUS! Very serious. It could be the same as last time but there are many ways in which this can affect him so tonight Bob and I went to blows over the worry we will have tonight of wondering in which way it will effect our son and in which way will we be able to treat him if at all. i had to leave tonight and when i did :((:(( *tears* he grabbed my finger i felt awful. this could turn out to be a pretty long stay and it stinks cuz we got a very small room which makes for very big anxiety attacks and a very grouchy mom who will be left alone to deal with this. i had to watch my other boys pack up their school work, food, and blankets to stay five hours away from us. *tears* he should be better now we're over a year out he still is hurting. he lost another pound and is now only 15 pounds. today scared us. we have alot of decisions to make as far as g tube, phototherapy, i really dont want to do that anymore.
we are already in the hole 134.00 in the checkbook and payday is two weeks away. i dont know what we are gonna do. the social worker brought cards up for us. HE IS AWESOME, but it only last a day or so.
something so odd happened today. my mom was in town for an appt so she stopped by and the PA came in and it was so weird he introduced himself altho she already knew him from dylan, earlier ty moments, and then they carried on this convo like he was informing her of his condition I'm LIKE HELLO i am his mother. he put on this big show. I dont know why if he was just trying to help how I dont know, or if he wanted to make it look like my complaints about him were unfounded ( wouldnt work anyway) but in any case mom posed some tough questions he had no answers for of course and she didnt really back down. I did. I slunk down and let her put two cents worth in. The weird part is he directly looked at her and was saying things like Why are we still having this problem blah blah and he didn't even talk to me or even update me as to what was going on. It was so weird.
in any case i want my baby well and feeling good again so we can bring him home and see him smile again today was so scary i thought we were gonna lose him and now i lay down probably not able to sleep worried this could be the infection to take him from us.
i told the boys to pray for tyler every night. Brandon asked when we can be a family again and i said i want you two to do me a favor every night look up at the stars and say tyler. they said they would and asked why i said no matter where we are whether we are all in different places, hours apart, we are all under the same stars so whenever you are missing me, daddy, tyler, or just our family being together look at the stars and say our name. I hoped as sappy as it is it would work and amazingly it did. i hope it helps them, now if I can convince myself to make me feel better too.
my body is tired and im trying to keep going cuz i know tyty's has to feel ten times worse. i want him to feel better, please let him heal, please let my baby come home soon. dont take my baby please.
ty has been admitted. i dont have alot of time cuz i have to ship my kids to Kewanee, but he had an awful scary episode today at clinic and developed a high fever of 39.3 and needed o2 got real pale, and fussy adn out of it. We had to stop phototherapy we are just hoping it is an infection we can treat and he will recover from. He is really sick.
I found out I broke my tailbone and i am in pain we dont have any money i mean literally no money so i dont know how we will do this. im so scared i hope he will be ok. please let him be ok. im so scared it was so scary today dont take my baby
Sunday, January 23, 2005
I am sitting up crying after the night you had tonight. Tyty you are so sick. You vommited all over. We couldn't keep your meds down. You topped out at 99.8 so there was still no fever forced call to IC, but we have packed to stay tomorrow as I think you will probably be admitted again. We are now wondering if you have the flu which is life threatning to you. You managed a smile as I took you from your dad tonight to rock you to sleep. You seem to want me when you are sick. I think your body has so much going on it right now it is so hard to pinpoint what is causing what. I think you have an infection of the stool, I think you have a viral infection, (drainage from the eyes, nose, congested cough, along with puking and runny stools) I think you also have a pretty bad flare up of your GVH, all in all too much going on in a little fifteen pound body. You didn't even have the strength today to cry. You just sat in pain. You are all red again and your eyelids are purple. Your brothers are not looking good either. Both of them are tired with purple eyes and when I hug your oldest brother I feel his ribs and it scares me. When he eats he ask how many calories are in this. He is so scared of IC he is trying to eat 1000 calories a day in hopes he will gain weight. Your brother had his x-ray the good news is the marble has moved to the intestines thank goodness, but he does have alot of stool and gas so we hope things progress naturally but it bought us three more days to try and naturally get it out.
It is going on 11:30 and I have to be up at 4:30 am to get ready for IC. We are to go the blood center but if you spike before tomorrow's trip we will probably call Steve and of course you will be admitted. I have the strongest feeling you will be. I hope you are not and I'm holding on to hope you just need blood and an immune booster (IVIG), but I know you are ill and my thoughts right now are as they always are when you are sick, please dont let this be the infection that takes you away from us.
As I was laying there awhile ago I thought back on the last two years. We were so surprised when we found out about you and though it has been the roughest road traveled since the day you were conceived it has been one of the most rewarding. As much as we have struggled to get you into the world and to keep you here you gave us life again. I dont know how to explain it the way I want. It has been so rough to get you here and keep you here, but this whole time preparing for you, then holding you for the first time, then seeing you overcome all these obstacles... the light in your eyes gave us back the happiness and hope we had lost before you came to us. The same beautiful eyes that bring us happiness , looked at me today with such pain and sadness. A look of momma take it away make me better. I dropped tears onto you as I said I'm so sorry tyty I wish with every ounce of my being I could heal you or take your pain and carry it myself.
I can't sleep, wondering what tomorrow will bring. Will it bring the dreaded there is nothing we can do? Will it bring another long hospital stay but with a chance to overcome this next hurdle, or will it be just a rough week topped with a stop, fuel, go home again visit.
I love you boys so much and each of you give something and add something to this family and I'm just so scared at this point that any piece of that can be taken away.
I ache inside so bad right now, I'm boiling over with fear of what tomorrow will bring. I daydream of you waking up with your usual smile and babbles of dada and nana. I hope that whatever you have to fight inside of you conquers this tonight and you will wake up feeling better. Do I know this probably wont happen? Yeah. But the mommy heart in me wishes it for you. The best part of being a mommy is knowing a little pair of eyes and a heart trust you and feels safe with you and knows that if you can make it better you will, the worst part of being a mommy is knowing those eyes and heart are looking at you wanting you to do that and you can't. Tyler, you look at me... my heart melts. I wish my love could heal you, and heal our family. If the simple emotion of love could heal, the love I feel for you and this family would make us the healthiest family in the world.
I sit here and I can hear your monitors telling me your o2 is dropping. I went and started the oxygen tank and placed the blow by next to you and i see the most beautiful little baby in the world laying there... laying there with a body in turmoil.
Sometimes I worry about your size, if you will ever grow, or if you will ever be able to catch up to kids your age, or the fact you are not walking yet, but I realized today, I will accept all that if you just didn't hurt anymore. You have been going through this for 1 and 1/2 years now. We accept you are a SCIDS baby, we accept you are in isolation, we accept we have live like we are in a hospital, we are having trouble accepting the fact you feel like crap every day.
I end this in hopes we can beat whatever is making you ill. Hoping that this isn't the end and that this too can be overcome. I drop my tears on the keyboard in hopes that my baby boy will feel good again. Hoping his eyes look at me with the glowing light that has kept us all going.
i'm scared tonight im really scared
So much to write.
I'm writing tonight even though i dont feel like it because I have a feeling Tyty may have to stay in Iowa City tomorrow. He woke up very ill today. Doesn't feel good at all and it seems most of it is his stomach and he seems so tired. He is a bit warm with a temp of 37.5. Pretty good sign something is going on as he is usually around 36.0. I managed two smiles out of him but he just seems blah and not feeling good. My mom came up to help me today. I fell down the stairs and my legs, ankles, knees, and back are really sore. She helped cook dinner for the boys and tended to Ty most of the afternoon. It helped alot. I think I would feel worse had I not had that help today.
Bam still hasn't passed the marble and is due to have x rays again tonight. We'll see what they want to do next. I just have a feeling we will have two kids in the hospital at once and it will suck. I wont know where each of us should be and Bob works all next week.
Now onto something I feel so terribly awful about. I cry even thinking of this and knowing I messed up so terribly. After the whole process of trying to get a doc to listen to me Friday, I went and made the biggest most regrettable mistake a mother could make. I administered the wrong dose. :(( I am so torn up about this. He is on a dose of steroids that is such a small amount to measure. Anyway, it changes about every two weeks and sometimes more than that if he has complications. I draw it up and then insert it into his line. Now, there is .01, .1, and 1. All in the same syringe. His old dose was .03 and his elevated dose would of been .08 but the PA said well, let's see, let's give*.1* as like a bolust to help kick this flare up. Now this is where my mistake was. I was to draw up * .1* instead in my tired state of being ill and having fallen down the stairs, and some due to the fact I dish this up so much sometimes it is easy to just do it and not think about it and this is where i messed up. I drew up 1!!!!! The sad thing is I didn't even realize it until I was explaining to bob how much we increased it to. OMG!!! I just started crying, freaking out, going through all Ty's daily reports to see if we had ever given him that much even as a bolust. I figured up the MG's and compared and I was a crying mess. I went thru the previous emails from Steve and Dr. G trying to see his total MG for the day. He was supposed to have 10 mg's the whole day. I :((:(( *tears* I gave him 62 mg's!!:(( Bob was infuriated and he yelled and yelled. I kept saying sorry. I didn't fight him back i just knelt down and cried. We got the number to the Hem Onc doc on call and it was Dr. R and we like him. He said that is a HUGE dose and it will rip up his stomach. It wasn't a catastrophy but if he was to drop in sats or puke we were to call him and then skip the next three doses. I sat up the whole night and stared at all the machines waiting for something to happen. He did have an awful sore stomach and he puked but had been puking, but he was in some awful pain. :(( I caused it. It became so real to me that I literally have his life in my hands and if I mess up it means his life. I held him and cried im sorry so sorry. I feel awful. DAMNIT I feel awful. We fought so hard to get him health and I MESS UP LIKE THIS!!!!! not only is he hurting because of me this may make or break my trust with the PA and docs as they may be hesitant to give me the rope I have as far as doing things on my own. :(( How could I do this? How could I not see that was wrong???? :(( i try so hard to do all I can. I'm not a trained nurse, I try to pick up what I can by watching nurses so I know what to do if I were at home and it happened but basically I have had no training and do my best and I feel like such an awful mother. I have let Ty down. How can he look at me and know he can trust me when I made such an awful error in taking care of him. *tears* i hurt my baby I get mad at the docs for hurting my baby and I did it myself. I hurt my baby *tears* im an awful mother. Im so sorry i let you down tyler im so sorry mama is so sorry. so sorry
i know steve and the doc will have my head for this and I deserve it *tears* they cant make me feel worse than I already do. Bob keeps saying he will take the blame but I said it dont matter i can take what they give me the part i cant fix is i made him hurt and i know i did it to him and you cant change that or make us believe otherwise and that is what hurts. knowing i hurt my baby:(( i just... now he may be hospitalized where he always gets worse i i
im so sorry tyty mama loves you so much and i let you down and im so sorry i would never hurt you intentionally ive tried so hard and it wasnt good enough im dumb like Steve said I'm an uneducated difficult bitch. im sorry im not smart enough or a good enough mother to give you all you need and you deserve a better mother you really do
hope and pray you get to come home tomorrow and that fever goes down please dont make him suffer because i am dumb please let him feel b etter please
i love you i love all of you boys and im sorry im not what you need and certainly not what you deserve you deserve better boys
momma
Friday, January 21, 2005
Ok, Now I must put my foot in my mouth and say thank you to Ty's PA! lol
Ty just woke up so I can't go into details, but I wrote an email to Tyty's PA and probably went off the handle a little bit, but soon he emailed and called and hopefully Tyty will feel better soon. Like I said, he is GOOD AT HIS JOB! That is why as much as he rides my nerves with the talking to me to other people I get mad and then get over it because he is the one person I want on his case! I just hope that whatever has caused this flare up will be found and we can fix it.
Not only that I got an email from Dr. G too.
This was my email. A little on the irrational side but it worked.
Steve,
I just want to add something to my last email.
Last time he had a GVH flare up we called you several times. We're not totally stupid to this. We have been through this long enough to know when GVh is acting up.
I just think we need to get a handle on this before it turns out to be like the last time. His skin is rougher than hell, he is red... I'm so frustrated!
He needs to go up on his steroids. It's not like we want to. No one wants to get off those damn things more than we do. We're sick of this already, but if he has GVH what else are we to do? Dr. G knows I know my child. Whether it is infection (which I think so) or not his GVH is acting up.
sorry. I'm just sick of watching him hurt this week.
peg
And this is the email back from him.
Hi Steve and Peg
I am in the loop on this one.
I think an infection (gastroenteritis, GI flu bug, or C Dff) could be inducing his problems, that may be causing GVHD to flare.
Plan should be to
1) increase steroids to 10 mg/day, can divide into 5 twice daily
2) we culture his stools on Monday, check Cyclo level to make sure adequate
3) consider going back to photopheresis for a few weeks only to see if we can settlle him down again
Does this sound all right to all?
Fred Goldman
AHhhhh Now let's hope it works so Tyty can feel better.
Now I have to go take care of Tyty. Although I feel bad for blowing up at them. I feel good that I did what I could to help Tyty, even if it dont work. I tried. I'm determined to let this child live a happy normal and healthy life!
THANK YOU STEVE! There I said it! lol I think I expect alot out of him. Why? I trust him with Tyty's care. He's a good PA. Bob and I both will admit that no matter what has went down.
Nothing is more frustrating than knowing something is wrong with your child and the people you are supposed to trust to care for him dont listen!
I'm trying to keep my cool and be "TACT" about the situation but I am losing my patience fast. I've had it up to here with the damn doctors, PA, the hospital and this damn disease!
My child is in pain and ill and they wont do anything about it!
Thursday, January 20, 2005
Today was a real bad day today for Tyty. He woke up and was happy, but when I brought him out I had the disgusting pleasure of seeing what woke him up. As I am trying to get the boys ready I open up his one piece outfit to see stool up his back and not only that his lines were in his diaper and both covered in this nasty stool. Talk about flirting with danger. In the middle of all this Tyty decides to throw a fit and pull on his C line dressing pulling all of it off and then tugging on his line. He hates that line and the sooner it comes out the better. So Now I had to somehow get his butt and back wiped off all the while keeping the stool from not only getting on the exit site but get all the germs wiped off his lines so as to not flush bacteria into his line. His naked, poop covered, c line exit bare and the kids bus came! WOW! I ran into the bedroom to get an outfit for him as I ran in there I pushed the kids out the door and ran back to Tyty before he could pull that line out.
If the day ended there it would of been a good day. lol
He then took his meds and for some reason after he gets his meds lately he is fussy. So I laid him back down. He fell asleep and I took this time to cough up a lung. This cold is wearing me down. I feel beaten. I tried to do laundry and ended up having an asthma attack. Once I got calmed down from that he was up again and this time was a ride and a half. Cry, cry, cry, gave him his other meds and he puked up mucus, and formula. Then he continued to cry for over two hours. No fever. Everytime he tried to swallow his bottle he coughed and gagged. So what I did was go and get a bottle of pedialyte. I know milk and formula can build up the mucus and make you cough more. I handed him the bottle he took a drink and I'm not kidding. He stopped crying, looked at the bottle, flipped it upside down and then looked at me as if to say HOW DARE YOU GIVE ME THIS CRAP! Then threw it and finished it off with a cry. Now to some this may be normal, but Tyty is very good natured and rarely cries, and has never thrown a real tantrum. In fact sometimes his pediatrician (early days) would tell us to make him cry to work his lungs because he never cried. So when he is fussy I know something is wrong.
Now I've been on the verge of calling Iowa City a few times this week, but this time I called Bob (he didn't get the message so an hour later I call back again) and said I think there is something wrong he has no fever, Do I call? He said email Steve. AHHH MAN! Do I have to? Can't I call the clinic? lol I'm so mad at that little man. But I do admit he is the fastest and easiest way to get things handled. Like I've said before, he is good at his job. So I bit my lip and wrote and asked if I could give him something more for his cough and see if we may be able to go up on the steroids because I do think a lot of this is related to GVH. He wrote back very quickly and said he would pass it on to Dr. G. Then he wrote again (I'm guessing before he left work) and said Robitussin for the cough and he had left a note for Dr. G. So we'll see what Dr. G says. Probably wont know for awhile. He is a busy guy and it always takes time to get answers.
I did call Bob and said they may want to see him with asking about a steroid upper. He had a lot of people call in and he has had to rearrange the schedule so much this week. He didn't know if he could work it out. As long as I have a way up there. I will go. I don't particularly want to deal with the PA right now but Ty's needs come first and if he needs to be seen, I'll figure out a way. If I can.
Right now, Tyler is laying on a blanket watching his brothers. I don't know if it is GVH, or an infection brewing... I think it may be both.
In any case, I'm so sick of this still going on after so long being out of transplant. Of course I will do anything to keep Ty here, but in my stinkin thinkin I just feel like he should be making better improvement right now. To be battling this still after being out of transplant so long... It just doesn't seem right. Something is wrong with all of this.
I'm so sick of seeing him hurt. Today after he puked he just cried and he leaned into me and I wished I could take it all away from him so he can play without hurting. I just held him and tried to sing to him, but he just hurt.
If we can just get him through the weekend. Which brings another problem. Bam still hasn't passed the marble and in fact has stopped all bm's period. So I am afraid we are gonna end up with two kids in the hospital at the same time. Bam has never been in the hospital since he was a young baby so I don't want to leave him alone. But to be honest I don't trust the docs enough to leave Ty alone. What will I do? Bob's full time AM now. He can't take off. He is basically running the store with Steve out for his wife. One day, ya know, one day of nothing wrong. I don't ask for riches, a vacation, just one day at home with everything calm. No marble in the intestines, no GVH, no work, no docs, hospitals, just three kids running around like monkeys and a husband making a bigger mess than the kids. Ya know regular stress.
Bob and I are getting better. He said the other night, we can't live without each other but we can't get along when we are together. I said, well, now I know we are in love. lol That's love baby. We are working on it. Trying.
Hopefully Ty will get over this. We'll see tomorrow what Dr. G has to say. Hopefully he will go up as I think a lot of this is GVH.
Wednesday, January 19, 2005
Today is so awful, I don't even know where to begin.
First of all, this cold is not giving up. My body aches from that bed, and I was so upset about the PA's lie I couldn't sleep all night.
Worst of all, Tyty is having a pretty bad day. He woke up happy, but it seems as soon as his meds get in him he is just cranky, fussy, gaggy. He had an awful stool. They are running into the diaper and smell to all get out. I think he has to have C diff or something. Maybe a stool culture can be done. I'll have to remind Bob to ask THE PA about it. I don't think I am gonna go up next Monday. I've had it up to here with that PA. I just can't deal with him anymore. Anyway, Tyler is fussy, but he has times of happiness as long as you hold him. He lays on my shoulder and if I put him down he cries. He has been drinking more and eating more. We have tried every other night for CVN and I think Dr. G was right he is starting to pick up in eating and drinking. Slowly, but surely. I finally got Ty to sleep and was able to put him down for the first time today. His skin seems to be worse in spots but still smooth in others. The redness comes and goes.
It is funny I was reading side effects from his different meds,
1.) loss of appetite is on four of them
2.) dry skin is on two of them
3.) a red rash could form is on one
4.) irritable mood is on two
5.) diarrhea is on all of them.
HMMM, how will he eat or drink more if the meds he is on causes loss of appetite? How do we know the diarrhea is not from a med and not GVH, how do we know the skin is from a med and not gvh?
It is one of those days. We are over a year out of transplant... He is still on a good dose of steroids, being fed through an IV, skin feels like sand paper, and he looks like he has been burnt. Something is wrong with this picture. There is just something not right.
What if he never grows? He is 16 pounds at almost 16 months. What if this gvh never goes away? What if we have fought for this long and we lose him, what if this is a losing battle?
I'm frustrated, overwhelmed, tired, worried, scared. And if I am all of these what is he feeling?? I want to heal my baby...
Tuesday, January 18, 2005
Today was awful!
The Pa went and told people I refused to bring Tyler up because of billing. This man infuriates me!!! At first I thought he tried to help us but when we called the lady back and she told me what was said! This PA hates me, fine hate me, I dont give a crap, but he goes out of his way to make me look awful!! Does he really think I would risk Tyler's care? This is the fifth or sixth time he has told someone stuff about me. Normally, I wouldn't care, but this is serious stuff, in terms of he is sending the message that I would risk his care over money, none to mention a bad mother which he has been working on for awhile.
The thing that sucks is this man is good at his job, and when we get along things get done for Tyler, and I thought we were getting to a good point again. When we dont get along I dont say all I feel like I should, he does just what he has to. No communication basically. I'm just so mad. I'll have to write tomorrow when I have calmed down.
I did send him the original email as proof that there was nowhere in that email I said I refused to bring him up. I said we can only do what was absolutely needed! Oh I'm so mad!!
Sunday, January 16, 2005
Today has been a trying day. Bam still hasn't passed his marble. I have a cold which means staying away from Tyty altho, I am the only one here to care for him. He needs his meds, IV, diaper changes, fed, and the whole time I do it I fear I could potentially give him a germ that could kill him. It is a horrible position to be in.
Bob and Bam are off to Monmouth hospital to get another X-ray to see where the marble is after 24 hours. I hope he can pass it so an operation isn't needed.
Saturday, January 15, 2005
Today was a pretty eventful day. We're trying to finish moving in (2 years later lol) so boxes are everywhere and the kids are home for three days and ready to go crazy.
So we decide to head to Galesburg to pick up another script. On the way there we hear choking we look back and there is Brandon choking we ask if he is ok and he says I swallowed a marble. WHAT?!?! He says I swallowed it. I did an oopsie. Apparently, he had it in his mouth and Bob hit the breaks and he accidently swallowed it. The haunting part is as we were getting ready he says mom i found a marble, I said Bam ( he wants to be called bam now, off of viva la bam on MTV) put it up it is probably to your mousetrap game or your magnetix. He says ok and I seen him put it in a candle holder of mine, and then Bob came in and I lost track of what he did with it. Now we know. This huge marble is now in his stomach. X-rays prove it. We have to feed him alot of food and fluids and hope he passes it, and if he doesn't withen 24 hours we have to go and take x-rays each day to see where it is, and if it gets stuck, surgery will be our option. We're hoping it will pass through, but Bam doesn't go all that often. As Bob says, he is like me and can go a month without going. lol
Tyler is doing pretty good, he said mama instead of nana today. He knew it too he gave me this big huge grin like I know I am cute. Temp has been fine. Stools are massive and up his back, skin is really getting rough. A very good friend of mine gave us a photo frame to mold his footprint, so we finally got to do it tonight and even on the mold you can see the rough, peeling, skin he has on his foot. It would not surprise me if they mention phototherapy again, I will fight it, but I'm sure they will mention it. I just can't afford it. It is outrageous how much that procedure cost.
Today I was just numb to all the crap going on. So much has happened this week, some small, some huge, some just unbelievable. I was down and depressed, then I felt guilty because there are people who have lost their kids, or may lose their kids soon, and I felt guilty because we still have the chance to save him and I dont want to take that for granted. Then I realized, anyone who has went through this... no one can really know how much pain and emotion is in this journey unless they see their own child going through this, but as I was tumbling over all of this I realized, you know anyone who goes through this knows there are ups and downs, good days, bad days, days you feel lucky, days you feel doomed, days you feel like you can beat this, days you just feel beaten. Overall, my kids know I love them and will never give up on them, but I'm also glad they see I am human and cry and feel, because then they know my emotions are true and real. Genuine, and that my love and strength for them is genuine.
As I got older and looked back on my childhood, I thought at the time my life was great, perfect family, but as I got older, went through my parents divorce, remembered back on things I didn't see before I realized it was my parents shielding us from the truth. They had troubles, but as any parent would do put on a front, a smile and pretended everything was ok so we would be ok. Now I know it was fake, and it breaks my heart. I hope my kids never feel this way I hope they know I will always be truthful with them. So some days I'm ready to tackle all the crap that is thrown at me, others I want to go to my room and cry. Either way my kids see I feel. It is ok to feel. It is ok to feel cheated because I have a sick child, it is ok to be overwhelmed, worried about medical bills, it doesn't mean I'm ungrateful, it means I'm in the middle of a very hard time, and I CARE. Underneath I know it can be worse, I know we have alot of advantages others dont, underneath I love my kids so much that I can't even begin to put it into words. Underneath, I'm madly in love with my husband, and underneath I am not only grateful, but feel blessed we have been given the chance to save my third born son, and underneath I have the strength to keep traveling this journey because I know at the end there will be health for Tyty, and that means all of these bumps, curves, and darkened side roads we're traveling will be worth it.
My hands are on the wheel and I'm still driving, no matter what I'm thinking silently in my head while driving, I am still driving, three kids in the back, my husband holding my hand. Destintation may be far away...
I'm still driving.
I love you my guys
Dream BIG
momma
Friday, January 14, 2005
Everything is falling apart. Our cable, phone, and ins. was cancelled. On top of that we spent all day trying to deal with one of our hospital bills being put into collection. We have all the proof of insurance yet since UIHC sent it to the collections dept. no one can do anything about it. SO our credit is screwed and it isn't even our fault.
The PA wrote today which was odd since he gave me the same information he already given two days before. In any case, yesterday while Bob and I both were on the phone trying to figure out the business end of all this medical care a doctor from Tyler's case who watches his blood pressure called and asked for a follow up, I just said we will have to reschedule. I just can't afford this. I know it sounds awful but I have to limit his care to what is the most important because they have the tendancy to have every doctor on earth look at him we are paying people we haven't even met. We have to stick to what is absolutely needed. I can't afford his care:(( I feel awful but it is reality. Anyhoo, I just explained that to the PA as he said he was gonna talk to Dr. Porter's nurse about an appt. I said, I had to cancel. I just can't afford all of these consults. I obviously kept the appt with Dr. G and Steve, but the extra consult I cancelled. I have to take him up to Dr. G. He needs that. That is needed no matter how expensive it is. The extra consults aren't.
Obviously his health is most important and I would never say no if he needed it, but UIHC has the tendacy to call a consult on EVERYTHING. They catch most everything too. It's not bad, but it is expensive. I dont know how to explain it. It's nobody's fault, it's just the situation and right now it happens to suck.
Everything is falling apart. Bob and I have the flu, the boys have colds, and in the middle of all of this is Ty. The little boy who can't get sick or it could kill him. :(( i'm trying so hard to be strong for my family, i'm trying so hard:(( i'm trying to see the positive and see that things will get better and they could get worse. i'm trying, but i'm so overwhelmed with everything that keeps falling into our laps. i long for the day i wake up and feel peace again. i wake up to responsibilities that some adults cant handle, i accept that, but the part im having trouble with is waking up everyday hoping that it isn't the day my baby boy is taken away from me. that some other tragedy doesnt rip people i love away from me.
as i pick my 90 yearold bones in a 28 year old soul out of bed i pray as i walk to his o2 tank and unhook his iv that there is no temp no hidden infection that will become the "we cant do no more" episode.
I know I have to stay strong or figure out how to be strong but im jusy having trouble right now. i know it will be worth it when he is healthy i have to keep saying and thinking that
as dr. g always says "in a perfect world" In a perfect world children wouldn't suffer with diseases that take away their childhood or theie life. In a perfect world tyty would be walking all over the house right now as i pull out my hair because i cant keep up.
in a perfect world....
Wednesday, January 12, 2005
Oh what a day. Tyler is gonna stroke me out. lol Every day I think we are gonna end up in Iowa City. He danced so close to a fever today. 37.9. 38.3 and I have to call the clinic. He puked twice and got real fussy. I took his temp every half hour and it didn't go up it went down. He is at 98.3 and is in a wonderful mood. As I look I see a tooth is peeking through. So I'm pretty sure his low grade fever was due to his teeth. Once he settled at 98.3 I gave tylenol and it worked great!
His BP is so low no meds were given. It was so low I have called the Home care supply store to get a trade in and a new cuff just to make sure it is not the machine because his blood pressures are so low. The only thing I can think of is he has lost alot of fluid and is very small at 16 lbs maybe he needs an infant cuff instead of a child cuff which could lead to screwy results. I could be wrong but I want to be on top of the blood pressure issue whether too high or low so It will be better to make sure the machinery is reading right.
His skin is awful and he has had an upset stomach altho that can be teeth too. His stool was clay like and only one today. WHOO HOO! Sad to be excited about that, but I am. lol
Now, I only hope we can keep him temp free from h ere on out especially over the weekend. I hate landing up there on the weekend because we get taken to hem onc and they screw everything up. They aren't real familiar with his case and it is like starting all over. To me, nothing has really changed for Tyler post transplant since he was let out after transplant. So keep him where he should be back in iso. with his PA who knows him inside and out not these residents who come and go in a month and dont know him from diddly squat.
Kids are wanting to play a game so I better go.
Praying for temp free tyty.
I love u boys
dream big
momma
Well, the PA wrote back about the diagnosis. He did what he is always good at which is if he doesn't want to answer he him haws around and makes it sound like he is answering your question, which in reality, he is not. I call this his cop out line, and I got one today. I still did not find out what the other L cytes were. He says he was minus t and nk cells. Ok... 2200 minus 500 B cells leaves alot of cells unspoken for. 1700 cells that are nothing????
He was poking around about his BP meds. I just do what they tell me. They switch it so much I get to the point where I dont know what to do. Most times I do what I want to do in that case. Before I would keep on top of things and memory always served me well, but lately. I'm so tired and so sick of the constant changes on their part I can't keep track of that plus everything else that is going on.
It is one of those days where I'm overwhelmed and on my own. I talked to another mother going through this. She says dont you have parents? I said yes, three sets. She says they dont take the kids? I laughed outloud. Are you kidding? I have trouble getting a babysitter when Ty is in the hospital. To me it is just our responsbility. We had the sick child so we take care of him and get him healthy and everything that is involved with this. The help would be nice because with three kids and a house, and then a sick child on top of it all... it gets hard to juggle sometimes. . But Bob and I do a good job. I think. We try anyway. We're both going crazy but it is all working out.
I better get off of here and do housework.
I need to get in a better frame of mind. I'm stinkin thinkin today. Have to pick myself up. Somehow...
Tuesday, January 11, 2005
Tyler woke up kind of icky today. He would smile one minute but then turn real fussy the next. We had to go to Galesburg to pick up some of his meds and supplies from Cottage and as we were driving around WAITING for the script to be filled he just puked all over. So we came home (Bob ran back to Galesburg) and I gave him some zofran. He puked again soon after. He didn't want his food or his bottle. He had no temp. The only thing I could think of was his pressure has again been low at 65 over 53. Top number being low. Our stupid BP machine is acting up again. (they send us crap ones) and it is at a time where we need it very much. I took it manually, which I dont like to do because I am scared I'll be off in the numbers. It is so crucial we make sure his BP is in the right range whether to give meds or not to give meds.
Steve emailed and said his magnesium was low so we had to go get the stuff to add to the tpn. I asked him about the mysterious high l cyte count at birth and guess what? No response. Didn't think so. I'm really starting to think they might of misdiagnosed him. I know it sounds crazy but everyone keeps mentioning it to me. Mother in law, my sis, my bio dad. I dismissed them before but when he didn't reply and after I seen his test scores at birth... I think they might of. I'm debating whether I should contact someone to dig further into it. In my heart of hearts I dont think it was, but there are so many things pointing to that being the case. Which would explain why he keeps getting the GVH outbreaks so bad.
He was a little more lively tonight. He seems tired, but that could be due to the low HG. He was fussy earlier tonight but we found out he was hungry. We tried everything today to try and get him to drink more. He will eat solid food and keep it down but he just doesn't want to drink. I think he was so young when they stopped feeding him he just doesn't know how to eat or in his case drink. Solid foods he will eat and eat but the bottle or sippy cup doesn't work for him. They keep pushing the g tube but we refuse to do that and I think we both still feel that way. We dont currently see a problem with cvn... Now if it started causing probs maybe we would have to consider it, nah I just dont see us wanting to do that. After a nurse told me some about it, it definitely sealed the no to it for me. Plus for the first few weeks you have to do both cvn and the g tube and I just cant do that. I have trouble keeping up with all his stuff now. They can think I'm awful but those docs and pa's dont have to go home and deal with this and trying to keep things straight. Hell, it is a job trying to keep track of expirations on the meds. This one is every two weeks, that one every two months, that one every week. Plus add to the fact he is on so many.
His skin looks awful! Stools have been real bad today. I seen this coming though. .03 is just too low for him. We always get to this point and he goes down hill. His skin really feels awful. I realized today, that this isn't even close to coming to an end or a good end anyway. This gvh is still as strong as it was two months after. We have a very long road ahead of us. I just cant understand why it is taking so long for the gvh to settle down. SOMETHING ISN'T RIGHT!! There are kids who are only a few months out and further along than him.
There just isn't something right with the whole picture. We are over a year post transplant and we still travel up there every week, he still looks like a puffed up tomato, he still has a red rash all over, and he still feels like a PICKLE!
We got another lovely collection notice from UIHC today. But to my surprise, hey they only want 346, 000. Sure uh I'll write you a check. Yeah, right after I pay off my 70,000 dollar house, and my car too. Idiots. If I could pay that... oh it's worthless to bitch about it. My baby is here and that is what I need and want to concentrate on.
His o2 still dips down altho it was much better last night. It is so weird, he'll dip to 85 sometimes lower but then in a few seconds he jumps back up. I really think he has sleep apnea (sp) Who knows? I'm just the mom. And up there being a mom doesn't mean jack.
Bob is getting his IV ready tonight. I hurt my back and am trying to rest some before he leaves and I'm here to do everything on my own.
I got so depressed tonight. I was looking through Pics and seen myself before tyty was born. I was skinny. lol I have gained so much weight. Everyone says stress, yes, probably but ya know i'm still fat stress or no stress. lol I was 140 before I had him, hmmm I imagine I'm pushing 200 now. So depressing. I'll get it off somehow. I always do. Brandon pointed out to me and Bob tonight that we have alot of grey hair. lol
We were cutting Brandon's hair tonight and I went to check on tyty and dyl and when I walked into the living room dylan had picked up tyty and was rocking him in the rocking chair. it was so adorable, tyty just looked up at him smiling. It was a warm moment for me. One of those warm moments that remind you that all the struggle and fight, and sleepless nights of worry are worth it. I try to pick one of those out of every day. Something that made me laugh and then that warm feeling of though my kids make me want to pull out my hair, they make me feel loved and warm too. My laughing moment today? Brandon telling Bob he was gonna take him on a ride on the pain train. lol Dylan rocking tyty was my warm moment.
Here is hoping Tyty has a better day tomorrow. Kids had today off due to an ice storm, but they will be back in school tomorrow.
It's gonna be a long road... I just want him to be here with us. No matter how long the road is if he is with us... I'll travel it. I may be bitchin the whole time, but I will travel it. He is worth it. He is so worth it. All three of my boys are worth fighting for.
I love you three
dream big
momma
Monday, January 10, 2005
Today was a so so day. Our PA liked the look of his skin. Although he has some rough patches, I personally think his hands and feet are softer. I do apply the creams but don't tell the docs, I honestly don't think they do didly squat! We'll humor them though. I baby oil too but his skin soaks it up pretty fast.
Let's see, we are gonna switch to the plaquamil ( I know it is misspelled, but I don't have Steve's notes at my desk.) in hopes it will help us taper down the steroids. Once we do that I really hope he will start growing. We also knocked his steroids down to .03. A 25% decrease. This is where we always get in trouble! We have never gotten this low and when we do he bounces back up there or we increase the next visit due to skin and stool patterns. When I look at his skin I am disappointed. I cannot believe that over a year out of transplant and he still looks so bad. He is so far out and shouldn't be having this problems to the degree he is. To me something just isn't right. My sister swears she thinks they misdiagnosed him. She says he didn't really have it. I tried to explain things to her, but what did I do as I cleaned out his blood test papers I see he had over 2500 L-cytes. HMMM, I thought about it. They told me he had 500 B cells soooo what are the other cells? So here I am a year after Tyler's transplant letting my sister's theory take hold of me. What if they did? Maybe that is why he is having so much trouble. Maybe that is why he is having a rougher road. I actually considered getting a lawyer to look into it. lol Although I'm still puzzled about the extra cells... I know there is no way that could of happened, or maybe it could..... In any case, we are over a year post transplant and still having problems as if he just had his transplant.
Although his fluid is coming off it is so hard to tell whether he is losing fluid or weight. His weight was down again today. To be honest though, I think it is fluid. He just feels like a baby now. If it was weight I would think he would look sickly or his numbers would be off or something. His nose actually looks like it is bigger than a dot. So I do think it is fluid. I don't think our PA is so quick to say that.
We also took down his prevacid to 5 cc. Down from 7cc. Now he has went without Prevacid many times due to Walgreens crappy service. He has went a week without it several times with no problems so I really don't think he needs it. Steve didn't seem to want to push it. Really why should we? So 5 cc it is.
After that episode we decreased his Lab to 1 cc, and his captopril to .01 cc. It seems to be doing the trick. As far as I can recall from today, that is the same.
His hemoglobin was 7.8, I think, again I don't have my notes at my desk, but in most cases we transfuse, but today Dr. G left it up to Steve and us. Steve said give blood, but asked what we thought. Of course, anytime Bob and I have to decide together on something it is made to be more difficult than it actually should be. I expected to get blood today. I think that was said in an earlier entry. I thought they would draw type and cross considering it was so low last week, but they hadn't. Which means a two or three hour wait for the type and cross and then for the blood to be ordered and then 2 hours or (2 1/2 hours if Steve draws up the orders. lol ) With it being given as an option, we chose to hold off because of time. I thought let's push it. He perked up the last few days so let's push it. Like Bob and Steve said, it isn't like we can't call up there and say, "hey, he needs blood." I very much doubt Steve would say no. lol Although who knows. Depends which Doc he has to listen to that day.
Now, cyclosporine. I came home after a long day out running errands and getting some stuff done for a story, and I received a message saying TyTy's level was over 400. Normal is 200-300. So had to hold a dose tonight and then go down to .25 from here on out. Carolyn said there was no order for Cyclosporine today so I thought I goofed by taking blood. Glad I did though. hopefully his liver wont take a hit from that.
We also, now I could be wrong, but I could swear we took his CVN away before in hopes he would eat more. Dr. G wants him off cvn. That would be so nice. It takes forever to get ready and is such a pain. He eats solids great he just don't seem to want to drink. Anyhooo, as I was saying Dr. G said we could try it again. I don't think it will make a difference as I don't think it did before. My memory is so bad though maybe, I'm wrong and we haven't tried this. So tonight Bob and I chose not to do CVN. See what happens. I also stopped on the way home and used a gift card given to us to pick up some orange flavored pedialyte, new sipper cups, orange drink (NOT JUICE) and a different bottle to see if we can't get him drinking more. I really want him off the cvn but I do NOT want to supplement with a g tube or ng tube. CVN would be better than those two to me.
We are not SUPPOSED to go back for two weeks (due in some part to the holiday Monday) let's hope we can stay home this next two weeks.
We seen Dr. Tannouse or mouse or whatever his name is. He is such a smart ass. Everyone talks about what a great doctor he is. He is, no doubt, but Bob and I just don't like his bed side manner. He is rude and has no sensitivity to your situation. There are very few docs I like up there. I deal with Dr. G. but I don't follow him well. Our favs are Dr. O and Dr. Rahdi, and we don't get to deal with them. Different rotation. They had some good fellows up there. I think that is what they were. Rola or Rolo, and for the life of me I can never remember this guys name but he wears black rim glasses and looks like Henry off As the worlds turns. He was super nice> Down to earth. I could talk to him. Rola, you could tell she was new and hadn't had the ego inserted yet. She was great. Of course our PA. My love and hate guy. lol He is probably the only thing keeping us from transferring. Shhh, don't tell him that. He can't stand me so I like people to think I can't stand him either. truth be told he just irks me sometimes. He has a smooth way of implying things and being a smart ass and getting to you. Pushing your buttons. BUT, He IS the reason tyty is here. He is the glue that keeps things together up there. He's told this often I'm sure. I really don't know how the man does it, or how he puts up with some of them docs. I know he makes a lot of money but it isn't enough for what he does. Now mind you, I'll probably be cussing him in a week. lol
Bob has returned to work as Full time AM. Offer still stands in QC I guess. It will be the same drive as now, but he will be gone more. WHICH I have a problem with because I gave up my career. Hmmm, why should he get to escape this all the time. He was with the kids for the first time alone after school today. He had them only 1/2 hour today before I returned home and he couldn't handle it. I come home and bing bang boom. Everything is handled.
Kids are hoping for no school tomorrow. It is supposed to ice and storm. Dylan has a cough as well as Brandon so we are hoping Tyty can stay away from it.
I better scadaddle. Ty is fussy. Dad doesn't have the touch tonight.
Boys, I love you.
Dream Big
Momma
Friday, January 07, 2005
Tyler has woken up ill today. Pukey and very fussy. He is as white as a ghost and just seems to be in some pain and very uncomfortable. He is a little warm. Kinda dancing with a fever tho nothing to alert Steve about yet. I took his temp one last time to make sure i wasn't masking a fever and then I gave tylenol and benadryl to try and help ease his pain and maybe get a few winks. He is half way asleep. His eyes are still slit keeping an eye on me as I clean. We'll wait and see what the weekend brings. I am hoping he can hang on temp free over the weekend and then get vamped up with blood to help give him more strength. It is odd Dr. G held off on blood. We figure there is a reason, but I wont say.
It's tiring living the way we are. Sleeping on the floor because of the o2 supplies he requires at night. Our bodies ache so bad. Everything is crammed into two rooms and we're constantly stepping over things. I'm so frustrated walking through the house. Trip catch yourself, stub a toe, curse, cry, cry so long you forget what you are crying about.
I really feel like I'm going crazy. I'm trying to hang on for Bob because he seems up so I dont want to crash on him and bring him down. I talked to my mom last night I had just watch my kid's face turn blue, his pupils fix and all she said was they are laying people off work I wont have anyone to talk to? I never have anyone to talk to. I spend every waking hour by myself, isolated with only conversation being when I listen to other people whine because their belts dont match their outfit, or they have no one to gossip with at work, or they have to be on a diet. I would give anything to have those worries, NO, I would give anything to have my kids healthy and those BE my only worries.
My mom and I just dont connect anymore. Our lives are too different. She is way up there and I am way down here. She has changed alot as I have. I love my mom with all my heart and I admire all she did to get us three kids raised, but sometimes I feel like she is a stranger. It's been like this for several years. I still have alot of anger about all that has happened while Ty has been sick. Or maybe it is me I wont rule that out. Maybe I need to realize just because they are family doesn't mean they are your biggest support. I'll except that. I haven't felt good about my family in a long time. Each one of us talks about each other and you can't trust a one of us. My sister tells my dad how bad of a mom I am, I say her lifestyle is not good for kids, she lies, dad lies, everything we say ends up back to the person it was about.
I miss the safety net that I had with my family. Whenever times got bad you would get thrown up and that net was always there, but it hasn't been. At any given time that net has and will be gone and I lay flat on my back. Everyone thinks oh its peg and bob they always work their way out, their tough, but I dont think people realize what a toll this is taking on us and how low we are right now. We keep going because we have to because we love our kids it doesnt mean it is easy. i just keep hoping we'll look back on this in triumph. I have to believe it.
I hope, with all my heart that safety net is always there for my kids. We have three sets of parents alive, yet we dont feel that if we ever need anything they will be there. We struggle to get babysitters and then if they do its cuz you made them feel bad. . I'm scared to send my kids to my in laws. lol They stay with my bio dad and who knows where they'll end up. Anyway, enough of my ranting. I need to let go of my anger it is completely destroying me. Just face I dont have a family I'm close to.
The episode with tyty the other night had me so scared about losing him... I haven't been able to sleep. I lay awake and think about how I can try to prevent tragedy. If we're stuck on the railroad tracks, how will i get them all out, if we go into the lake how do I get them out, if a burgler breaks in how do we hide until help gets here and who will i call for help, if there is a fire how do i get them out how will i know, what if the bruises on brandon are leukemia, what if dylan relapses, what if the gvh in tyty never calms down, what if bob wrecks, what if i get sick with cancer. :(( or if the bus wrecks I almost kept them home the other day until bob said PEG they have to ride the bus! it overwhelms me I'm so paranoid i am so scared i'm gonna lose them.
We all walk around in this protective shield of it can never happen to me. now I realize it can and does and because I know it can happen to us and does happen to people my shield has been broken and I want it back. I dont want to know six year olds die from diseases they try to fight for years and years, i dont want to know a mother can lose her fight with leukemia leaving her children without a mom and a husband to do everything alone, i dont want to know that a fire blew up a family, i dont want to know that at any given time the people i love most can feel the tremendous pain of tragedy. take the image away of that little boy with a sheet over him being wheeled out of his room. take the image away of kids trying to understand why their mom isn't there to hold them and PLEASE PLEASE TAKE AWAY THE FEAR AND POSSIBILITY THAT I COULD LOSE MY BABY AND NEVER FEEL HIM AGAIN. please *tears*
I dusted today and dust flew on my shirt and I was so scared I was gonna get him sick. I immediately went in and changed then sprayed myself with lysol.
He is almost fifteen months and today he hurt to even sit up much less walk or do anything most kids his age do. He weighs 16 lbs that of most three or four month old babies. I wish I could heal him. I wish this stem cell would calm down and grow without putting his body in constant chaos. He looked up at me today and I know if he could talk he would of said I hurt mommy, make me better. I kept telling him, soon baby you wont have to do this, soon you will get up and not have wires on you and you wont have to take meds and you will have that c line out of your chest, soon you will be able to run and just drop when you are tired without worry of meds and iv hook ups or o2 sensors being put on , soon you will feel good enough to play like everyone else.
*tears* please, please, let him see life without pain. Let him see what feeling good really means. Show him that feeling good doesn't mean they found the right happy drug to make him feel better. Let him know what it is like to live life and feel good. I hope HOPE he is able to do that.
I can't wait for the boys to get home that is the test. Tyty loves them so much he will sit and watch and laugh at them forever. There are ways to tell if a fever is coming, he wont smile, he wont pay attention to the boys, or the boys can't make him smile. When this happens... I know we are fighting an infection. He dont feel good enough to enjoy what he loves the most.
I keep thinking we are always turning that corner but as soon as we get close, something happens and he gets bad again.
i love you boys as much as it sounds like i'm giving up i'm not. this is all worth it. i would do anything for you. even talk to myself in a journal. i love u with all my heart boys.
dream big
momma
Thursday, January 06, 2005
i'm having alot of trouble dealing with things right now. Last night tyty had an episode where he turned blue o2 went down and his eyes, his eyes, were just fixed pupils not moving and he was getting puffy. it was so scary. My husband and I were so scared. We didn't know what to do who to call. who would watch the kids if we went. i for a moment thought last night was the night, the night we were gonna lose him. after it was done i just cried in bob's arms. he is not himself today but after talking to Steve our PA and emailing dr g so on and so on we think it is blood pressure. or who knows maybe there is a bigger prob. ill take blood pressure cuz at first we were thinking seizure or heart attack. our mind ran wild. we switch to a new drug monday scary they say how good it is well........... if it is sooooo good then why dont you docs use it to begin with???
his little hands are getting rough again:( another gvh flare up. our pa said it usually USUALLY straightens out withen a year doesnt look like tyty is so lucky. gvh just wont lay down and let him get healthy.
i mean i try to tell myself we are further than we were last year at this time or even two months ago, but my patience and emotional well being says something different... i want my baby better. it was so weird last night how fast it came on. he was fine and then BAM!
i seen andrea yates gets anew trial, it makes me sick, i would do anything for healthy children and she kills them!!! i know she was mentally ill...
bob is working nights tonight but had to cut out early cuz they found a spot on his eye, scared the crap out of us. turns out he has a calous (sp) on his eye due to water and sun exposure (which i told him it was thank yas very much lol he couldnt believe i was right) anyway, so he has to take drops everyday and when it gets bigger they will do antibiotics in his eye.
last few days have been hard, been down about bills, our house payment will go up due to no financing because of our credit cards full of prescriptions and gas for ic trips we have an apr loan so who knows if we can make the payments. plus can you believe this? IOWA CITY PUT US IN COLLECTION FOUR TIMES ALREADY!!! there goes our credit. were trying but ya know 543,000 is hard to come by. Just the beginning.... BUT YOU CANT PUT A PRICE ON A HEALTHY BABY and soon i hope with all my heart we have a healthy child in our arms and we will be saying UH HUH WORTH IT! I'm hoping with all my heart.
it's been 72 hours since my last wink of sleep. im kinda tired. really tired
i love you my boys and as much as i whine about the probs that are coming up from this, i love you and if this is what i have to do to keep you all three healthy and in a family... i will. momma just gets weak sometimes, but i will get back up
because i love you
