The Rollercoaster Ride of SCIDS
Friday, February 25, 2005
Well, last night started off with hitting a racoon and damaging the car which lead to a very mad dad which lead to a grouchy mom which lead to a fight. First night back together and we fight. Sigh, we're back. lol
Tjis week I spent a ridiculous amount of time on Ty's skin. Mineral oil, wash, scrub, lotion, repeat every day. One creme for one area, another for another. Between this and the steroids his limbs, trunk,hands, head are all noticeably softer and less flaky.
Dr. G and I have emailed back and forth a few times and it sounds like we will go down some on his steroids this Monday.
Tyler is happy and playing and eating sooooo well.
As we know it will be a long road bob and I have decided to clear the house. Take down all the knick knacks, remove all extra decors so that it will make it easier to clean. It looks bare but we need to figure out a way to make it easier. I would like to potentially get the upstairs done but not likely so for now we will use it as storage as it is one less area to clean. I would like to get carpet up there so we can live in it because it is so small downstairs with all the medical and clothes. Brando really needs his own room. I just can't afford carpet. The downstairs needs carpet so I thought I would use downstairs carpet upstairs but no money.
Ed hasn't called back after three days and since he has been home all three days it is to be assumed he is mad. No babysitter. Oh well. Less to deal with as we weren't really getting on the father daughter track anyway. But now we have to get up early take the kids to Bob's mom's house as she doesn't drive and they will have to miss every Monday at school. Not good but I dont know what else to do. It is just too hard to spend all day and night in Iowa City alone. Can't go to the bathroom or eat. Now if we could be on the bone marrow ward everytime it would be managable but clinic ya just cant.
what else... Not looking forward to dealing with Steve I do hope by luck he will be on vacation or Dr G wont send him in.... lol doubtful. Nice to hope.
We got some lovely cards for Ty today. when Dylan was sick we got cards every day in bunches and I never realized how much they did in keeping our spirits up but they do and it did that today. A church in Mt Pleasant Iowa sent us a signed card. It was so nice.
This weekend will be busy. Nothing much else to report. I better get back to work.
love you my boys.
mama
Thursday, February 24, 2005
Sorry for the delay in writing but Bob worked late due to getting back late the night before so last night I was alone to take care of all three kids which would be hectic anyway but throw in three days of missed school, showers, meds, IV's, supper, homework, diaper changes, snacks, lunches, picking out clothes. I was swamped. lol Head was a spinning.
Well, we made our trip to St. Louis. Tyler has dwindled down to 14 pounds, but you would only see that on the outside as he is coming into his own and holding his own with us now. He make look like a baby but he def acts like he is in his terrible twos. lol
My first thought is I can't believe we were directed to Iowa City after seeing St. Louis. It is on a scale much larger than UIHC. Just in the way the looked him over was so much more detailed. NO PA!!!! lol yeah baby now that's what I'm talking about. Anyway, they were so much more into detail and looked him over so much better than our docs ever have. Altho we left with more fear than we came down with I'm glad we know about these things.
The doc basically said we are doing all we can as far as the gvh. She said there are a few things she would suggest to Dr. G to change around and play with. A couple of drugs we can try. The drug that Bob had mentioned to Dr. G she mentioned to. She asked if had given metro blah blah and we said no they didn't Bob said I knew it. lol She said she will mention some different routes. She said the risky part of this is it will take Tyty back to having SCIDS basically. He will be so immune suppressed he will be in the same position as he was before transplant. But he has been on steroids too long and it has become dangerous to him now. She said he cannot live with the gvh in the gut. We have to find another way to feed him. They mentioned G tube again but the problem I have is his gut cant take the constant rate of food and I will have to do cvn and food for quite awhile after and I just don't have time To do all of that. I'm having trouble now.
The next thing she mentioned was his soft spot wasn't closed yet. Not a good thing but probably due to steroids so she wants us to get a scan done of his brain to make sure it is ok. Also, he is so small she would like to get him into endocrine to make sure he is growing with the disease meaning if he needs hormones to help him grow, He isn't even on the charts but they said the good thing is his height, length, and head circum. are all in the same area and consistent with each other which means it is probably due to all he has been thru with meds and this disease. She also thinks his chronological age is not matching up with his bone age due to the steroids. Which means his bones are that of a baby because they have been restricted in growing. So they want to do bone density and a test to see how old his bones are. I know this seems like a lot of test and I don't want to put him thru them but the thing I've found hope in is in these test it is about his future growth and that means they are thinking long term. He is at such a dangerous weight that there isn't much leeway for him to lose so I think maybe we need to jump on this also.
She talked to us about the death rate. She says the thing that will take him away is an infection. The gut GVH, and an infection. She says even tho this gvh is chronic because of the ongoing issues we have with it most of it is classified as acute and is what most kids get right after transplant. We are lucky it isn't much worse or effecting other areas such as the organs. She said he can live with the bad skin. She says tho an infection is what will be our biggest threat at this point and he is in high risk of getting one with every touch, cough, breath of air. So we have decided to knock down visitors even more and are hoping with Summer coming it will help.
Overall she gave us alot more to think about.
She did say since it was quite a trip that she can suggest things to Dr. G and keep in contact with him so we dont have to travel down there every week. She says the treatment she is suggesting can be done anywhere. SO I emailed Dr. G and we set up an Appt. Monday. He asked about things so I told him how well Ty has been doing. It was so much easier and less stressful than emails with Steve seem to go.
The boys hated being left and I dont blame them. I told Bob know we know. The doc said if we get what we want this will probably go on for five years (by getting what we want that is him here and not taken from us) so we need to quit living like this is gonna go away soon. We're living temporarily thinking it's all gonna be better soon but it wont. So we need to make this a part of our life. We have to get the older two kids what they need. We need a balance they cant be going on being neglected thinking it will only be temporary. We have to get our act together. How? I dont know.
Tyler has been doing well. He has been drinking and eating four times his usual. Steroids may be helping that as they make you hungry. He is so playful. Yesterday he was such a stinker. He would do things and then laugh like you aren't gonna yell at me. Well, I did. I remember with Dylan we didn't and he is very spoiled. I said Ty You need to be corrected even if you are sick and he shook his head no and laughed. He was sitting in a chair and Brandon sit next to him and he pushed him then yelled. I said you can share ty he shook his head no. lol
Bob and I are doing well. I think we are gonna give it another go. We talked and had a funny trip to St. Louis. We got some good pics for the boys. Got lost in St. Louis trying to find this aquarium place for the boys we find it the next day and it was closed the whole time we were there. lol Go figure.
My teeth have been killing me. I had three fillings fall out from previous work when I was prego with Ty and I tried to just hold off as long as I could to save money well they are infected, a nerve is exposed, and they are breaking. THEY HURT! Wouldn't ya know most places you cant get in until April. I'm supposed to hurt like this to the point I can't sleep until April. We found one place but what most people don't understand is it is hard for Bob or I to get an appt due to most of our time is accounted for already or we don't have a car or we don't have a babysitter (my sister wrote a note to my bio dad and he seems mad so he hasn't returned calls so no babysitter for us anymore) So Bob sweet talked this lady that used to live where we did and got me in next Tues. They wont do anything that day so more pain will go on. I think they will pull three or more of the teeth and at this point I say yeah less to worry about. lol they are in the back so unless your rooting in my mouth you wont see.
I also have had my glasses for over five years so Bob made us an appt for us both to go see the eye doc my ma will watch the boys that night as Bob got it for later. She is the only one who will watch Ty due to his probs.
Dylan is happy to report my hair is in its natural haircolor. The colorlift worked. And we all including myself go to see what my natural color was. Red with brown streaks. Cool. I kind like my natural to my colored. I did the stuff and then asked Dylan what do you think. He says perfect now don't dye it mom. Ok. lol
All our pipes had to be replaced yesterday. It was funny bob was working on the pipes with the plumber downstairs and I went to the bathroom all of the sudden Dylan barges in and says the fed ex man wants you to sign on line 10 mom. So I am sitting on the stool with a fed ex man in my frontroom. Dylan has the door wide open. lol my gosh only our life.
Brandon seems out of sorts. We're gonna get him in for test next Tues also. He seems to feel left out and is going to extremes to get attention. Extremes for him which isn't much so to speak. He whines and mumbles and cries about everything. I feel so bad for him. I feel bad for them both but then when I try they just take advantage. We def need to find a good balance it is just hard with everything going on.
Also we need to get Dylan into the dentist as he has a broken tooth but he says it doesn't hurt. He is still going much to his disappointment. The trick to all of this. Finding the time and appt schedule to allow it. We have two days to get all appts, groceries, Iowa City, Bills, school meetings, work around the house, car fix ups done. Who knows what else we usually have to do but it is hard. Bob says we need an assistant. I said then we need money. lol But he is right it would help. If someone could take Dyl here or Brando here or run to the store for me. Like right now I had nothing to pack in their lunch but I can't go get it cuz I have Ty.
I'm feeling kind of icky but I have so much to do today weeks worth of laundry, unpacking, getting ready for IC Monday, I have to figure out how to vacuum with Tyty here. Try to read email so I can get some deleted. I need to order scripts. Contact the docs on some refills. Do bills, I need to get jeans and shoes for the kids when I can shop for those I don't know. Poor Brandos shoes have lips.
I better get cracking on my work. It will be a very busy day.
Sunday, February 20, 2005
Here it is 3 am and I still can't get to sleep. Everything is rolling thru my head so fast. I just can't relax and calm down.
Ty ended up having a real good day. Fussy here and there but tonight he just came alive and was full of it. He is really starting to let us know what he likes and dont.
He was laying beside us tonight and just a laughing and I thought to myself does he know? does he know all that is going on in his body and all that we are facing? I mean I know he knows he feels like crap and he has to take meds but to him is this normal? of course it is all he knows. I dont know how to say it. I see him smile and does he know all that we are going through what all this may and could mean.
There are several leaks in the basement again so before we leave we will shut off the water until we can get it fixed.something else we cannot afford but you can't have it flooding your house.
So much can happen, will we like St louis and want to stay? If so how will we get there each week? will they say we're doing all we can and if so how do we fix what has been broken with the PA, when all I really want to do is not deal with him anymore. But of course my main concern is Ty so if it means dealing with him how do we move on from it?
I miss the boys already. I'm so worried about both of them. They drove me crazy this weekend but I miss them. I feel awful but sometimes I think we need to get this house under better control but how do you do that when you dont even know where you will be from one day to the next. Every day holds a new adventure for us.
A friend of mine suggested I pick up the pen again so I broke down and bought a notebook to see if I can't start scribbling some more. Since Steve died I just have alot of trouble putting things down on paper. I've written a few but they aren't good.
They are trying to get me to write a book on our experience with SCIDS, but I just dont feel up to it plus the story isn't finished. The only reason I would is because in the last month the docs and pas at UIHC have made us feel like we are wrong for hitting a rough patch or feeling what we do. Nobody can tell you it is wrong to feel like you do. We've been thru hell let us break down once in awhile so we can find the strength to keep going in the midst of it all. I have felt a range of different emotions through all of this with Dylan and now Tyler. I feel bad that I feel this way but going through what we are we just have to work through it. I would write a book so people who are dealing with this can know that someone else has been through this and felt this way or that way and no you are not wrong for feeling that way.
It is so easy for Steve or Dr G or any of those docs to sit up there and say oh they are angry and crazy and they shouldnt be that way. it is easy because when they go home at night they go home to their healthy kids. When they see kids in a hospital bed it isn't their own. They can say, "oh I wouldn't act that way if I were in that position." But they dont know until they have been there. The way I feel and act up there doesn't even come close to the person I am outside of this situation. You can tell yourself I'm gonna be the easiest one to get along with I wont lose my cool I will always be strong. But it wont happen. If you are scared you are gonna feel scared and you are gonna act scared. It is called loving your kid and feeling it. Is it right or wrong? No it is what you feel. (my ma told me that)
I feel scared right now, I am scared my child is gonna die and I am gonna have to tell my boys their brother who they waited for and hoped for... for so long is gone. I am scared I will lose my family because of all the struggle, I am scared I will lose the one man I truly love, most of all I am scared that all of this will happen and I will not be able to say I did my best to prevent it. If I am crazy for that Steve Rumelhart, then so be it.
I feel alot of things right now. It doesn't make me crazy, it makes me human.
Now it is four am I have to wake at 7 to finish loading the car, getting tyty'smeds, Iv's and clothes on him. I got everything ready for this trip loaded up what I could tonight, all the meds etc.. Bob looked at cars online. lol Oh well, his work will come tomorrow because if that hotel room has a bath tub, hu uh momma is locking the door because she has a date with calgon! lol
I hope we get down there safe. I worry so much that stuff will happen. This situation makes you so paranoid. I am worried about the boys, the driving, the big city.
My sis wrote a letter to my bio dad consequently he has not contacted me so I'm really in trouble if we go to St louis or start phototherapy again. No babysitter. YIKES!! Those are too long of days to be by yourself.
My sis is due soon. I'm so scared I will envy her having a healthy child. It sounds awful I know, I am so happy for her but at the same time I wish I could have what she will. It hurts to see any baby. I so wish I could see Tyler healthy. More than anything I wish he could feel healthy.
Also, to a friend of mine, the "strength rock" is with me. Thanks for everything, your letter gave me so much strength. It was one of the first steps to getting my head back on straight. You and my ma have helped me through this week so much. I think after the bad news had I not had you two I would be in worse shape.
Once again I am signing off.
My boys I love you. so much.
I am so ansty right now. I can't think or sit still. I am so scared about so many things right now.
We managed to get the boys dropped off. Nothing is more heart breaking than watching your kids wave at your through a car window as they drive away from you.
Today Dylan was helping hold Ty down to change his dressing and Dylan looked up at me and he said Mama I'm sorry for being bad yesterday. I said you were just having fun mama is just swamped and my patience is not as good as it should be. So we went on and as I changed Ty he looked up at me again and said mom you look really tired and old. I said thanks dylan you made me feel better. he giggled then proceded to tell me, "mom if you sleep maybe you will look better." lol I said I imagine I would honey. then as we were giving ty's meds tonight Bob looks at me and says you look so old and tired. I said what the hell is it with you people! lol
Tonight was supposed to be us getting some sleep but we are still up waiting to give ty more meds as he has been gaggy. Most of the bags are packed and we decided to wait and leave until tomorrow morning. First thing.
My in laws informed us that our hotel is right by a park that is known for murders. How lovely. What a nice send off. lol
I have never been so I dont know.
I dont know what to do with myself right now. So many things have been running thru my head, my broken marriage, family woes, job, money, Steve and how we are gonna handle that, what have i done wrong, have i done anything right, are we supposed to be doing more, are we doing all we can. Just so much running thru my head and I can't stop all the things racing thru my mind.
im so tired and mixed up right now. I want to get myself in the right frame of mind as to help Tyty but I am so tired. I just hope that no matter what this appt brings hope. whether it be that we are on the right track, getting the right care, or hope that there may be more to help him. I dont know if any of that came out right. nevermind I cant think
I guess I sign off until we come back.
signing off scared, worried, and tired.
we love you boys
Well, we are getting packed and ready to go. The kids will be off to their p-ma's tonight.
We lost our power last night. So we had to take shifts in keeping tyty half way up as to not let his o2 get too low. We got by. All of us ended up in the same bed tho. lol
I'm getting real nervous. I am so scared they will say there is not much more we can do and I know deep down that is what will be said. Even if they do I'm not giving up on my child.
tyty is a little rough today. stools are up to 10 times a day and his rash just bleeds and bleeds. i'm thinking maybe he has an infection in his stool, maybe c diff or rota. He is real congested again.
I can't think long enough to write a proper entry. I'm really scared right now. it's all i can say is i'm really scared for tyty right now.
off to St. Louis.
we love u boys
mama
Saturday, February 19, 2005
Friday, February 18, 2005
the pipes broke in our house last night, but it didn't keep us up anymore than tyty lol he was on fire last night!!!
The pics turned out great!! And he had such a good night. There is such a big difference in him compared to the last time we took pics.
Boys have a half day of school today so I will be a busy one. Better get started. They are doing good so far today.
still have no access to my account so if someone is writing I am sorry.
Thursday, February 17, 2005
Well, I haven't been able to get into my mail all morning and I'm preturbed. lol
Anyway, Tyler woke up and is doing great today! Stools are icky and smell like C_diff but I learned my lesson I am not contacting Steve about this. It'll have to wait until we go up next time.
But today we took the sailor pic. The boys great grandma bought Dylan a sailor outfit when he was a baby because Bob had one done in a sailor outfit. So with every one of my sons I took a picture of them in it at the age of 6 to twelve months whenever they fit in it. Ty and D I think were both around a year and half as they were both small due to their illness but my budding Brando was all of six months. lol Anyway, we made a make shift photo shoot in the frontroom as we did with Dylan too, Brando went to a preofessional as he wasn't ill. Now, I just have to get the sailor pics developed and blown up which may be when he is three before we see them. lol With all the expenses pictures usually are the last of our worries. Altho I love taking and organizing and keepsaking them. I might bribe Bob into letting me get them developed.
The pharmacist who mixes Ty's tpn came in. He asked if it was Tyty on the blanket. I said yeah. He says is he active I said oh yeah he just got in trouble for geting off his blanket. So I said I would go over and get him so he could see him. I brought him over and he was cooeing over him. Then he said they tell us not to get attached to their patients but he says it is hard to do. He went to leave and I said Have a good night he says now I will. I thought it was sweat. As much as I complain about the PA and Docs there are really so many great people in all of this too. The people at option care, the nurses at the clinic and BMW they are all so great and they tell you in the beginning not to get attached but it is too hard. We have met such wonderful people from this experience.
Well, I made my oldest son's day (who by the way had a great day, and Brando has only used the bathroom once since he has been home VERY GOOD) I went on the internet to try and find a solution to my hair problem and I found it with color lift it will take the black off my hair. I told Dylan and he was estatic. He wasn't happy he gets to miss school next week he is happy I'm gonna have my blonde hair back. lol
All Boys are doing well so far today. That is what I learned one day at a time. I dont know how else to get through. Tomorrow may suck, but today is ok.
Now I am off to enjoy them and watch Monsters INC. I love the little girl named boo off there.
mama loves you boys
We took Brandon to the hospital. They found some blood in his urine so we tested again and altho there is no infection the docs want to go ahead and test him for the diabetes again. (As all he test showed he was low over the weekend and no sign of high blood sugar) they also want to send him to a urologist. I'm not quite sure when we will get him to the lab and then to a uro doc. We'll figure out something. There is just something not right and the docs we have down here are good and believe there is something wrong too. So we'll try and figure something out. We are so overwhelmed with all the problems going on, Brando's health, TyTy's health, Dylan's school woes. We are so tired and worn just from emotional stress not to mention the physical. Brandon's blood sugar was actually too low so Brandon was very happy to have a twinkie for breakfast this morning. Dylan put a hole in his pants so I need to do some clothes shopping soon. He is so hard on his pants. He has dwindled down a good stash of jeans already. lol
We have maps and etc. For St. Louie. I've got a lot of our bags packed and the boys are packed also. It is a chore just getting TyTy's stuff ready but what I did is as I went through doing all his med stuff as I grabbed what I needed I would grab two extra and stick them in a bag that has now turned into my med bag. If I take too much fine, but the stuff we use for him will be hard to get down there as much of it needs doc orders to get. We seen the doc we will be seeing. Bob found the site last week but we just now got to look at it. We have a female doc. I always like them better. SOMETIMES not all but most times they understand a mother's worries. Not always you can get some real cold female docs too.
Bob and I have been going over our situation with a fine tooth comb. We just don't know what to do. Best case is to just talk to Steve and get things worked out but we have tried to do that before and it never works. We always end up back where we are now. Bob keeps lecturing. You act like you have to like them. We hired them blah blah. I try to explain to him it is important the main caregiver and PA work together because during outpatient (doesn't matter inpatient) but outpatient almost all of the communication is thru the PA and caregiver and most times that is what they decide to do next is based on. Bob doesn't know the info so even he was to go by himself the info would be in accurate therefore not taking the right steps would then happen.
I keep going over how he treated me the other day. Bob says he should of said something to him but was so mad at the time he was afraid he was gonna blow up. I said yeah right chicken. lol
Tyler was so so yesterday. You can def. tell a difference when we use bactrim and when we don't. He required o2 last night and just was off yesterday. Even if he is not allergic to it I don't think it agrees with him. Most meds you do take don't agree with you, but I still would like to make sure he is not allergic to it. Just so I know I'm not potentially killing him everytime I put it in his mouth. Still curious as to why the docs wont check. It could solve a lot of his problems. He sprouted up a little last night. He is acting so much older. Now when you do something he lets you know. lol He will say no or push you away. BUT the thing that made me sad was everyday we inject steroids into him along with unhooking his IV and then flushing him. Well, needless to say we have quite a few supplies set out ready to be used. As I started and as the process took place he would pick up the things I needed and hand them to me. Not just any supply tho he handed me exactly what I needed and when I needed it. He knew the routine of this. He is a year and a half and he knows the order in which to medically take off an IV and hand me the right syringes to inject, flush, and then to cap off the c-line. It was the cutest thing but sad that he knows this. He has the biggest eyes and he would hand me a syringe and then look at me like this is right right? It was the saddest thing I have ever experienced and that is saying a lot with my life.
On a good note, he perked up and almost started crawling, and he also drank more than he has ever drank before yesterday. It wasn't just sucking on the bottle and then by the end of the day he had drank some. He grabbed the bottle drank and in about an hour he had drank 2 ozs. To most of you that is odd but not for TyTy it is amazing for him as he usually drinks that in a day! I think he has finally worked up the muscles in his mouth to get what he needs and wants out of bottle. It is a bit odd most kids this age their parents are trying to get them off the bottle but not us we want him to. lol We were always odd. You do what you have to do to give your kids what they need. Tyler got his own happy meal last night and did pretty good. 2 chicken nuggets and some fries and then he finished it off with one whole twinkie! He loves twinkies.
Well, my 2nd attempt at getting the black out of my hair failed. Dylan is devastated. lol I managed to get a few roots back to blonde but the rest wont budge so if anyone has any ideas of how I can go from dark to light without totally frying my hair drop me an email. lol I know it can be done as many people do it I just don't know how to get it back to my blonde color. I used the blondest color they have and still can't get it out. I hate it too.lol
We got the car fixed up and ready to go there were a lot of problems, (a lot of money too) to fix but we needed to if we were gonna drive five hours.
Also, to all sending emails I am so sorry I haven't written to anyone. I'm very lucky I get on here to write so I figure I'll write in here so everyone knows what is going on and it saves a lot of time on my part.
Becka went to Australia and has no computer access unless at work which she isn't supposed to use it there so. I guess she needed to just get away from all the problems back here. I think she thinks the further she moves away the less it will hurt not seeing her baby. It wont work though. I know running never helps. Wish it did. easy problem solver if it did. I h hope she comes back soon for everyone involved.
I'm pretty excited one of the baseball players I interviewed signed my guest book!! I about flipped! If TyTy knew all who were thinking of him.
I tell ya tho now that I see Tyty's attitude I am confident he can get through this no matter what docs say. He is well, he acts like me. lol he is stubborn and he knows what he wants and when he wants it you better give it to him or he does it himself. I go to give meds to him now and he will shake his head no and say no then he will continue to scream for whichever parents isn't giving him his meds. Altho I am lala so maybe he is saying I'm crazy instead. Been around Steve too long. lol
Well, I guess that is it for now. I write in the morning because he has been sleeping in. The time of 1:00 pm on is just hectic and busy until bedtime.
We'll somehow get through all of this.
If someone could just tell me all three of my kids were gonna make it through this I would be fine right now. I don't want to lose any of my kids and the fear I will is overwhelming right now.
Wednesday, February 16, 2005
I'm having a stinkin thinkin day. Real down on myself and things seem to really be bothering me today.
I can't get this PA situation out of my head. Then hearing Dr. G pretty much say you can go to another hospital. If we are not to be able to afford this hospital or the trips there. How will we take our kid to a hospital where they don't even want him to be treated? All the barriers are up. Nobody wants to deal with anything. Bombs are being thrown and poor little Tyty is in the middle.
I keep going over everything. I know I am difficult. I am sorry for that, but I love my kids and as much as I try I can't just sit up there and do nothing or say nothing because then I feel like I'm not doing what I should for Tyty and he has no voice unless I speak up for him.
I know it isn't all me because even Bob said last night the way Steve acted and is acting is ridiculous. Even when I tried to explain myself and mend things with him he is still an asshole about it. I'm the kind of person who hates it when someone doesn't like me. I'm always wanting to know why and what reasons. He is the kind of guy who gets little tactful put downs into everyday conversations so you can easily assume what he really means but to someone else he is putting it nicely. Like Bob hates it but Steve always makes comments about our insurance and how poor we are. It irritates Bob because Steve gets these little digs in, but Steve is so tactful about it people can easily say we are being over sensitive. (Little does he know I was offered a job that would pay four times what he makes.) When in fact Steve is just good at icing everything. From day one, (back to Dylan days) he has made comments on my care for my kids mainly because he knows I am insecure about it. Doctors, inn fact Dr. G told a nurse how well I take care of TYTY the last time we were up. (she told me) But Steve always dwells on how I messed up this or that's not typically how we do it. Fine, I'm not typically a nurse I am just doing the best I can.
I'm just bothered by all of this. I can't get it out of my head. I'm mad at myself for burning this bridge but at the same time I don't want the bridge there, but right now we have to have it there due to circumstances.
Basically yesterday Dr G said no Steve go somewhere else. Well, if it was that easy we would of by now because I have loathed this man for a long time, but the point is more importantly that our son needs care.
I wrote that email in hopes this would resolve somehow but Steve had to be a little wousy and handle it the way he did. I have went over and over that email so many times and I thought it was just insight to why we are the way we are right now. Maybe thinking he would say ok they suck to deal with now but if I were there I could easily see how they could feel that way. LOL not this man's life has obviously been easy. I guess I'm wrong to think that hospital staff are human and can feel. Dr. G basically said its no sweat off his back about TyTy, how did he put it. I'm invested in him. Great now my kid is a business deal and that is it.
Right now I have so much anger, regret, dread, fear. I don't know what to do with it all. On one hand I just wish Steve and I could just bury everything and go on (which we've done so many times already it never works) or just sever all ties, but then Dr G says there is no one to take his place. I just want to feel comfortable taking my baby up there. I want to be able to be part of his care, and feel comfortable telling them things. With him being the main person we deal with I can't. He got agitated when Bob kept looking at me for the answers to his question, but Steve doesn't realize Bob is at work he doesn't know the answers to the questions. That is my job so Bob doesn't know what his vitals, stools, or vomit patterns are. I keep going over everything trying to figure out how to fix it but I don't know how or if it even can be. Realistically I know we cannot take Ty down to St. Louis every week. It is impossible. This got blown out of proportion real fast. A second opinion asked about by us turned into this big hub bub between bob throwing in his two cents, me despising Steve, and the pure frustration we have because Ty is so sick. It just snowballed.
I sit and wonder how some of the moms put up with how things work up there. How do they go by without losing their cool? I've always thought that, but then I hear stories and here I thought I was the only difficult mothers but I've been told about a woman throwing a nurse out of their room, a man (bob's friend from work) actually getting into (the same PA I hate) face and security being called on him. I actually heard another mother screaming at a doc up there. I know it is the situation but they always make you feel bad like you are the only difficult one to deal with. I heard another grandmother screaming at a nurse over her grandson. We are not the only frustrated parents up there. They get so defensive if you even ask about a second opinion which is why my mother in law thinks they are being pissy with us. I tried to tell them both several times. We just need to know that we are doing all we can for our son. You know they probably will say the same thing but then I know I am doing all I can which in turn WILL MAKE US FEEL MORE AT EASE WHICH MAY MAKE US EASIER TO DEAL WITH KNOWING WE *ARE* DOING ALL WE CAN FOR OUR BABY BOY.
You know maybe I am really screwed up and I tell ya Steve makes me see that I am and maybe that is why I hate him so much. He makes me see I'm worthless, not a good mother, bottom of the ladder, bad person. he is probably right, but in all of this where is tyty?
I really thought the email would work. Maybe he would think ok we don't like each other we'll just do what we can to get tyty better blah blah. I thought I actually took the right approach this time. Guess not.
I am just really worried about Tyty's care right now. I'm so scared.
Bob has to work Wednesday so that means after getting back really late from St. Louis we will have to get up and go to work early the next day. We had to cancel one of D's meetings and I don't know why my mother in law thoughtthere was no school maybe they dont up there but the kids do have school. So this weekend will be filled with trying to get all their work done for the next few days packing endless medical supplies and just the essentials for the rest of the family for the trip.
We were researching... When we took Dylan up for his transplant this hospital boasted about how they were the best Bone Marrow unit in the states blah blah Bob got on this site where it list the top ten hospitals, runners up, and honorable mention. UIHC did not even make honorable mention. Here I thought we had him at one of the best places in the world to take care of this. NOT. I'm not saying they are bad just thought they stood further up as far as a good hospital to have your kids in.
As you can see my head is running races. I'm so worried and upset my chest hurts, I can't breathe, and all I can do is worry more. I really feel like I'm losing my mind.
Dylan was mad because the black did not come out of my hair so I will run to Wal Mart to get more dye when I run in to get Ty's prescriptions. I need another one for Silvadine but I don't want to email again to the hospital so I think I will use A &D instead.
I thought this would help but it didn't.
TyTy hasn't woke up yet so I don't know how he feels but he did not require o2 again last night. A good thing. He was so playful even as we went to bed at midnight. He is calling me lala now. I don't know why he can't get that mama out but he sure does try. lol
I hope he looks and feels as good as he did yesterday!
love you my boys I'm trying so hard
Tuesday, February 15, 2005
Well, what is new. ALOT
First of all, Tyty is doing so well today!! He is full of piss and vinegar! He is playing with the kids, yelling at us as we walk by. He looks great!! He has had a very good day. Dylan had a good day at school and Brando was happy that I found the roses I threw away of his daddy's. lol
Right now I am in the middle of dying my hair. As per Dylan's request. lol He got 11 out of 14 right so I asked what do you want for your prize he says, dye your hair back to your brown color. lol
On the other hand, my attempt at relating to Steve rumelhart on a normal level failed. He took the email to the doctor like a little wousy. So no response as I expected, but then he decided the doc needed to know all I said. Which is ok cuz nothing was bad, but now I know it isn't just me for the reason this relationship dont work. I talked in length to the doctor about it and have figured out a couple ways we can deal with this. Basically I pretty much am gonna have to stay home during appts which is gonna effect alot as so much can get lost in translation. Like the telephone game things get lost along the way.
They think Steve is perfect and obviously dont know all he has said about me and my family. Oh well. I used to care but now I just dont. He isn't worth my time. he is just a pa. And as I think about it I really dont think he is as important as he wants us to think he is. So I will just deal with the doctor when we need something otherwise I will use my own judgement instead of checking in to make sure everything is ok.
We are going to St. Louis. We leave Monday and will return Tues or Wed. We made arrangements with them today. We wanted to take the boys but no one can watch them while we go. So I guess their p-ma will watch them. they will only miss one day of school as Monday is presidents day. Wednesday we have a meeting with D's team at the school, so it will be a very busy week. It will be very hard to pack everything that Tyler will need such as IV stuff and meds cuz its not like we can just go buy his stuff. The car ride will be almost 5 hours. Interesting ride I will say. lol
well, that's it for the update we have alot to think about and alot to do. I dont know how I will get everything done.
Tyty will stay with us in a hotel we'll have to clean it up real well before we take it in.
Time to wash out the dye and hope the black runs out. Doesnt look like it did Dylan will be so mad. lol
Well, I wrote an email to Steve Rumelhart explaining everything and asking him to either step off the case or work it out so we dont see each other. It was a pretty long and personal email explaining to him why we are losing it and basically a reach out to hopefully see if he can understand where we are coming from. I put myself on the line with this email as I said many personal things. I never expect a reply with him. Because he is all work and if it has any touch of personal or he has to admit he may of had a wrong part in it (as I admitted I did) he wont touch it. He may not even think it is worth his time to read it, but I feel better.
I couldn't sleep or eat last night all I thought about was the fact we walked out of that hospital and no one looked at Tyty, and we had no idea who was being treated by or the instructions in which to follow his care for the next week.
Last night Bob and I lost it. We had a fight in front of the kids. He broke two chairs. Brandon just cried he wanted a normal family. Bob and I just stopped and said what the hell is happening? Our family is falling apart. We lost our cool in front of our kids. We just feel like the most awful parents right now. Everything is out of control and I dont know how to take control and if i did I wouldn't have the energy to.
In some good news, Dylan had a wonderful day in school, Tyler is breathing so much better and even slept through the night and did not require o2 again! We think it is because he is off the bactrim. Altho Dr. G wanted to start again we wanted to go one more day without it and then give it to see if there is a diffrence. We have actually thought about taking him to a local hospital to have him tested for the allergy. Iowa City refuses to test for this allergy. Why? I dont know they call consults on every other little darn thing but not this. Why? I think they know he is but dont want to take it off his med list. I dont know. Dylan is allergic it to it as is Bob so it is very highly possible. I told Steve, why not test for it if not just to shut us up and show us he isn't so we feel safe putting it in his mouth. Why not? I find it odd they dont want to find this out since he gets a little bruise and they want a skin graph or poops weird and they want an endoscopy.
Tyler was in a good mood last night, but Bob sure wasn't. He informed me yesterday I had only one job to worry about. So being the little witch I am did nothing last night. lol I let him do it all! So I spent my night answering his many questions and listening to him grumble. I saimply sat in the chair and sang, it is only one job why are you so tired? why are you complaining? lol I got to watch a tv show, and I got to write the email to the PA. Two things I rarely get to do.
Tyty's skin is still red, but like it was Fri. They were all shocked at how red he was yesterday they hadn't seen the worst of it. The boys are tired, scared.
I think our trip will probably be next week so I might see if I can't get someone to go down with us to watch the boys while we are at the hospital and then tyty when we can hopefully take the boys out to do something. They really want to go to like a sea world thing but I tried to tell them St. Louis boys not florida. lol
We had one night last week that was so nice. They boys were watching jaws and Tyty and I were on the couch and bob on the computer. It seems stupid... but it was nice. Boys and I watching a movie talking and it was peaceful. real peaceful. we dont get that alot but that night we did. I wish we had more of those nights.
I haven't ate since yesterday so I better get some food before Tyty wakes up now that I got that email off my chest and feel better. Even tho as Bob says it will be a waste cuz he dont really care to me it wasn't because I feel better and I know, the most important thing, I KNOW I TRIED MY BEST TO H ELP TYLER BY DOING THIS. I put personal things on the line to try and smooth things over for Tyler.
I am not ready to give up on him. I'm tired but I'm not willing to accept what they are telling us.
i love you boys.
mama
Monday, February 14, 2005
STEVE RUMELHART IS AN ASSHOLE!!!
ok I feel better. Now, if I knew anyone from the hospital would see that I wouldn't write it but I know they wont.
Today we spent most of the day hearing about how Steve Rumelhart told everyone we are angry and crazy people. Then listened to Dr. G tell us we need family counseling, How much they care (which if they care so much why wasn't my child even looked at?), and how going to St. Louis would only help us and not Tyler, and if he does survive the life we are living can and probably will go on like this for five to ten years.
First Steve walks in obviously with attitude continued to mouth off, be rude, and very unprofessional, which in turn I did the same! Now I know two wrongs don't make a right, but hey I aint taking crap from a weak PA. Nothing came of the time with Steve but animosity. Dr. G informed of us about what asshole said again not one look at Tyty, we left with no appt anywhere, no idea what to do as far as meds, no clue as to what even came out of this appt.
OH except one thing. They did exactly what I said they would. They kept the steroids at the dose I GAVE! We would of wasted a trip up Fri.
Dr g didn't add much light to anything he basically said we need help. It kills me these people up there know KNOW you have a critically ill child yet they expect you to come in doing cartwheels and pass out daisies every week.
Oh Steve thank you so much for telling everyone I am an uneducated blue collar bitch! (by the way Steve I was offered a job that paid five times what you get) Here have a candy heart for your generosity. Hey Dr. G you don't even know our kids name here have a daisy with a ribbon, oh and what's your name doc oh your new but making decisions for my kid that don't help, oh well you get a very special gift of potpourri in a cute home made basket!! Hell NO! We are not pleasant people. Sorry for feeling and hurting and being frustrated with the fact we have an ill child, two kids going down the tubes, no money, docs we don't trust, and a little tight ass PA who insist upon telling people I associate with outside of the hospital what a stupid bitch I am!
He said he would get us a second opinion, but we have no idea when he will give us the info. We have no idea who is treating Ty or when our next appt where will be. He said he would try to get us in St. Louis next week but he was in a meeting when we left so I don't know.
We also asked to have Steve Rumelhart removed as his PA but doc said the way they have it divided he has no one else to help him. So I either stop going up or he doesn't come in. I think Bob (even tho he did not stick up for me today which led to me saying to go ahead with the divorce, childish I know. That's me) is sick of all of it and is gonna write Dr g and tell him Steve and I can't work together and will hopefully get him off or what I think Bob really wants is to get Ty into a different hospital completely. I don't know. I just want Steve off the case. I think it would be too disruptive to take him away from this hospital and this treatment, but at the same time we aren't getting anywhere. I don't know. I'm a mess, Bob and I disagree on everything.
He tells me last night. Just don't tell them anything, just say we did what we had to do about the steroids and don't say anything I said I don't know if I can lie it is important for them to know he says just say we did what we had to do and then shutup. Ok. Well, he walks in and piss ant starts asking him questions and he is lying because he doesn't know the answers, he is just throwing out numbers, and then piss ant mouths off something cuz he was mad I wasn't talking and Bob lets him yell at me even tho he TOLD me to be quiet. Then piss ant ask him about the steroids and with no provocation at all he melts like a snowman in July and says it all. Ok, then why did I keep quiet??
The hospital is sick of us, we're sick of them, they could care less if Ty gets better, and I could care less if I ever see that piss ant jerk again. He doesn't serve any purpose in the case and before I thought it was best we keep him on, but now it is hurting Ty's case.
I don't know maybe we are difficult but it is because we care and we are worried about our son.
I'm tired, scared, lonely, sad, mad, angry, pained, worn out.
It makes me sad that our son's care is up in the air, too much damage has been done and I don't know what to do anymore.
signing off sad and scared
We're off to see if someone has new treatment for Tyty. As we research we see little reason to be hopeful, but we are refusing to give up. Bob printed off alot of new stuff we haven't tried and we'll see if anyone can help us with this stuff.
On a good note, TY LOOKS GREAT! I am so proud of myself for calling this right or so it seems at the moment. He was in such a good mood. He puts both hands above his head with pumped fist whenever you say champion!! IT IS SO CUTE!! I'll say champion and he will pump his fist and raise them above his head. Altho, whenever I have to chage his diaper and touch that rash or give him meds he SCREAMS dada. It makes me feel awful but it is really hard to make a baby understand that mama isn't trying or wanting to hurt him but this will help you even if it dont feel like it.
ALSO, important to me is he has required no o2 the last two nights he is at 100 right now as we speak with a pulse of 98 so he is very calm yet no o2 needed! I'm starting to buy into Bob's theory of the bactrim allergy! Now this could all be coincidense (sp) who knows.
No matter what he has felt better he was wanting to play at one in the morning! I loved it!
I may not be a doctor...
but I AM a mommy.
brandon hsa been creeping into our bed at night. Well, i got up yesterday and was washing dishes around 6:30. pretty soon he came out and said mama. I said what? he says, you snuck away from me. I said well, get over here and talk to me. He looks up at me and says, "I hope Tyty lives so you can be happy again mama." I cried, then I gave him a huge hug and said all three of you make me very happy! Then he complained as mommy forgot to wipe her hands off from dishes and he was soaken wet! lol
I better get the guys motivated to move. We're already fifteen minutes late!
i love you my boys. dream big and pray we can save tyty.
Saturday, February 12, 2005
I am so happy to report that Tyler looks so much better and even better news is for the first time this week he woke up with a smile! His skin looks so much better. I dont know if it was the bactrim or the extra steroid! He also said mamamama today! hehe not NANA MAMA!! i love this boy so much.
I also got a call from our Pastor. It was so weird as if he knew. He had been around the flu so he wasn't gonna stop by, but I told him the news as he likes to put Tyty on the prayer list. He said he would pray for us and for our trip to St. Louis. As I was getting TYTY ready he stopped by and said a prayer over tyler. I cried so hard and he just hugged me. It was something I thought may give us strength. Before he left he gave me a check to help with expenses on our trip to St. Louis. I cannot even begin to say how much this church which hardly knows us as we just moved into town has helped us so much. We've had help from so many people. This I DO feel truly blessed for.
I have two weeks worth of laundry and packing to do so I better go but I wrote a poem and I wanted to post it. I couldn't sleep last night. Tears wouldn't stop. But I'm not ready to give up. If god takes him then I need Tyler to look up at me and know KNOW that no matter what he sees a mommy and daddy who is never ready to give up and is willing to go to any lengths to bring him health!! I sat up thinking if we are going thru this much pain what is he thinking?? How awful it would be to look up at the people who care for you and see defeat. As A mother I cannot prevent bad things from happening. It is the hardest thing to accept as a mother but as hard as I try my kids will face hardships, heartbreak, the worst fear, pain, and loss, but the one thing I CAN promise is I will never give up on them and I will do everything in my power to help them through these things and be the biggest support they can have. Am I heartbroken that I may lose my child?? My heart is in a thousand pieces, but whatever god's will is I must never let my child think I have given up on him. He needs to see that his dad and I will do and say and be whatever we have to to get him even one step closer to health and life. so today I picked him and I whispered to him... we love you, we're proud of you for fighting so hard, we are not giving up Tyty, YOU ARE worth all of this and we feel that you are meant to be here, so we are fighting for you Tyty, we are not giving up. ANd as stupid as this may sound the whole time I'm talking he laid his head on my shoulder as if he was thinking, ok, i feel better, safer now. He looked up smiled and I knew. HE IS GONNA GET THROUGH THIS! I'm fighting for my baby, my husband, and my family.
Mommy And Daddy
Wipe the tears
from your eye
I'm not ready
to say good-bye
Hold onto me
don't let go
I'm stronger
than you know
I'll fight
on through
if you'll fight
for me too
No matter our time
just love me
hold me close forever
mommy and daddy
Friday, February 11, 2005
well, we got the worst possible news today. i've spent my day crying then replaying every step we have taken and wondering where we went wrong.
It started with waking up and seeing tyty beat red! I mean almost purple he is so red and dry, his skin is just rolling off of him. He is on .03 steroids very low dose and the same dose we always get to when he breaks out again. Even after spending the day fighting with the PA I emailed him, or bob did at first and asked to have his steroids raised. The doctor thru the PA says no we can't do that. We dont feel comfortable. Now let me also add, this is a new doc, who isn't totally familiar with tyty's case as our primary doc who happens to be on vacation or gone which is common for him. He goes to alot of conventions etc. This infuriates me, due to the fact we contact them so many times and they dont do anything but when we go to our next visit they are like, "wow, didn't realize he looked this bad, if we had known..." YOU DID KNOW!!! to top it off the PA knows he does this. He has followed him since day one! But alas he can't give the final decision. I threw a holy shit fit and even said we are not keeping our appt. find me someone who can fix him! Bob finally had enough and since he can keep his composure with this PA ( I can't this man sets me off like a box of firecrackers in a lit fireplace!!) he basically said this case isn't gonna fix itself and that he could live with the skin GVH but he can't live with his intestinal GVH and it isn't letting up and they have no answers. I can't bear to think or say what comes next so I think everyone can assume. With that, we asked for a second opinion, which he said he would help us with. There is a place in St. Louis he said that maybe would have a chance at some new treatment or more ideas on how to save our boy. It is a long shot but we want to try. So we will go up Monday and hook up with Dr. G and get things set up with a coordinator. I dont know how we will afford this or how we will do this with the kids, but I have to figure something out. If there is any chance I can save him or find treatment to heal him Bob and I are willing to do it. We'll have to figure out the how later on. The PA said he would help us out in any way he could to try and help Tyty. Dont buy it but hey give him props for trying to be convincing. He went on about how they care deeply for tyty and his health. Yeah, you screwed him up and now wont help him. It shows!
In any case, this doesn't help Tyty this weekend. I didn't feel comfortable leaving his steroids as they are. We spoke to a certain someone ( I will not say who as it has been asked of us) and altho this person is in medical personal, he is not authorized to make decisions without a doc, but said he understands how hard it is to have diff docs coming in and changing things and basically said this (as I was told second hand) as professional I can't give you the ok to give the extra dose, Those decisions can only be made by the physician, but if we were on a deserted island and it was strictly my decision I would say to give them. So tonight I made a decision no mother should have to make but every mother who wants to potentially save her son would. I had to decide on whether to ignore the docs orders of no steroid bolust or read between the lines of a certain someone and give the dose we usually do in these situations (as it is probably what our primary would do) I sat at the counter with the syringe and bottle in my h and for at least fifteen minutes. His usual dose is .03 (let me also add we go up and down on his steroids almost weekly) when we give a three day bolust it usually goes to .07 or .08 and then back to .03. Also, during my steroid goof up last week i gave six times this and the docs said it was ok. So I stumbled over this for so long. Now, I know when he is seen Monday they WILL go up on the steroids but will it be too late???? Probably. So I chose to ignore the docs suggestion and I gave our bolust dose of .07. It felt like a movie on lifetime or something. The mother following her gut and ignoring docs orders. Now, I dont feel like a great mom because of this. Do I feel bad, awful? I dont like not following doc orders, but I dont feel guilty as I thought I would. Instead I feel safer knowing GVH is not gonna win this weekend and if it does it wasn't from lack of my trying. I've been through this twice with two children. I'm not totally stupid to this. Altho I am not a medical physician I have come to know alot about medicine I wish I didn't. This dose is safe and will cause no harm, but it might just keep gvh under a little control until they can see him. I'm not proud of my decision. I just feel it is what I had to do to try and save my son. I dont think I would of done it had a certain someone not gave me the read between the lines today.
On another note I think I have traumatized my kids. I dyed my hair black tonight. If I didn't dye it I am completely grey now. I look like I'm 90. I used to dye it blonde making it a strawberry blonde color but the grey was showing through it so tonight I dyed it black and my kids are traumatized!!! lol Dylan says mommy you look much more beautiful demure with brown hair. Brando wants to dye his like mine, but wants me to change mine back, Tyler just stared at me and looked at bob and then looked at me with his big eyes bulged out. Brandon tonight of course was having the trouble with overactive bladder and so far nothing has shown up on his cultures so they are thinking nerves. I asked him Brandon what's wrong. He simply said, I want everyone to be less angry and mean. Dylan said, I want things normal, change your hair back, tyty gets better and you never leave us. *tears* Bob and I are just at a loss on how to handle all of this. We love our kids so much but it seems all we are doing is screwing them all up. *tears*
Bob came home from work early after we talked to the hospital. We just fell into each other and neither one of us has put tyty down. One of us constantly has him. Today I just walked around the house holding him. I came home picked him up and took him to the window for the first time. Let him see the sun. He grabbed the window and the sun hurt his eyes it caused one tear to fall and as I looked one fell off my cheek too. He laid his head on my shoulder and I walked around the house telling him how much I am proud of him and how much I loved him and how much I dont regret having him in my life the last year and a half and as I started with the sadness and the fear... As I spoke of my love for him sadness turned into rage, and before I knew it I was crying and telling him I wasn't giving up on him, my words had tears behind them but force beyond belief I said If we have to fight for five years we will. I will NOT let my child be taken away!! we have fought too hard he has went thru too much for this to be in vain!! As fast as the strength came... it went away too.
As far as St. Louis. I guess me and Tyty will live in St. louis while bob stays with the boys. But then I fear if something happens they will have missed his last... *tears*
my heart is broken he hasn't gotten to live. He has never been to his grandparents house, or in a store, or outside, or just a day of feeling good. Now I find out he will never see those things?????
Tyty was unplanned. But to us he was our surprise, and he was meant to be. Altho we hadn't expected it to me while I was pregnant it was an extra gift god sent. (i know my friends will flip when they hear me talking of god) to me god sent him to us because he knew it was the last piece to complete our family. He was MEANT to be here so now i stand in this whirl of black clouds wondering why he would send him to us then take him away with only knowing pain and suffering?!?!
I didn't trust Iowa City. I heard many things about the night Dylan's heart stopped and I didn't want ot return to UIHC, but as soon as I heard Steve was there I trusted him. I didn't trust a one of them, but in the bottom of my heart I always believe they would pull him through I thought it was just a matter of going through the long road and in the last few weeks the realization that he may die slapped me in the face and then after today... *tears* I dont want to lose my baby!!
When I was pregnant it had been five years since we had consistantly had a baby in the house. I remember thinking I can't picture life with another baby. It was so surreal. Now... now I write tonight thinking I can't imagine life without Tyty. *tears* I dont want to either
Thursday, February 10, 2005
well, i guess brando may have diabetes and an infection. tyler has gotten more ill and they want us to bring him up. dylan got in trouble at school and told his principal he just isnt doing well. life stinks right now
I've went several rounds with the PA! No questions answered. Big surprise! I take back every nice thing I said about that man. He is a liar, fake, and acts like he knows more than he actually does.
I have to find a way to get my son into care that will help him not hurt him. i dont know how but I cant sit back and watch him go down the tubes because an egotistical doctor wont admit he messed up!
So much going on.
I got a call from the nurse at Brandon's school today. We had noticed he had been using the bathroom alot. Last night on the way back from the city he stopped four times to go. We had noticed this, but he is going each time (adequate amount) it is clear, and he says there is no pain while he goes. So I thought maybe he is drinking too much pop. Anyway, the nurse called and noticed the same thing so we are going to take Brando to the doctor today. My first thought? pure terror. I'm so scared it is something big. Maybe a small infection, I am hoping, but seeing this on a daily basis I know how a little thing can turn into a big, serious thing, and I'm terrified!
Ty woke up and is very red, dry, and fussy. His bottom is so broke out he is bleeding into his diaper. He had me up all night again last night. He just cant breathe. He stopped several times last night. Dropped into the 70's even with oxygen. Of course they have no answers or ways to make it better.
I'm getting bombarded with phone calls so I better end. I will try to write more later.
I was just researching and found a side effect on a med that is equal to ty's symptoms I have just written the PA who is probably mad as hell at me to ask if it is possible he has any of this. See if he writes back.
Wednesday, February 09, 2005
I dont even know where to begin as to explain all the things that are going wrong right now.
Tyler has turned completely red and has dried out again.
Once again I went at it with the PA today. His words, "there are no magic answers, nothing we can do."
They screw my child up and then say, "oops sorry, we dont know what to do now." I was myself and blew up as I always do when it comes to my kids. Said a few choice words. I wish "my steve" was still here.
I'm not ready to give up on my child. The treatment he is receiving now obviously isn't helping, I have no money or resources to change that. I dont know what to do.
There are a million things going wrong but I'm so tired and I can't get my head to stop turning or my eyes to stop crying long enough to make sense enough to write what all is happening.
My email informer has given up and moved away due to her own personal problems so those of who she usually kept informed I'm sorry for no updates. I guess for now come here for updates.
I wish I had more to offer, but Ty is ill and has kept us up the last few nights. The hospital routine and other probs have taken a toll on us and things are pretty bad right now. I will try to gather myself when I can catch up on all that has been put off.
my family is falling apart, the fear of losing ty has become realistic in the last few days and we are terrified, bob and i are just tired, the boys are starting to struggle, we put D into counseling today. He is terrified to leave me, he is scared no one will be here to protect me. (he says this) We're trying to bring their childhood back but it is hard to do when they have to still face grown up problems. Bob and I were always skeptical of the counseling, but I told D to try it and if it isn't for him we can stop, but to use an open mind. I will do ANYTHING to help my children through this.
I have to go rock tyty. He has congestion so bad he cannot sleep or rest. All my hard work of getting his skin smooth, and looking good and it has been blown to hell by this hospital stay.
I'm not confident in his care, or his doctors, treatment, or the outcome. i pray god doesn't hold it against him that his parents can't afford different treatment. If they dont know how to treat him... i'm so scared i dont want to lose him. my three sons... i need all three sons
Thursday, February 03, 2005
i feel like an awful mother. tyler is not feeling good at all and I'm stuck. I can't see him as I am still sick, my dad is sick so he can't watch the boys so I can't even stay up there in a hotel so Bob can get some relief in a real bed with real food.
The boys are having a hard time. Brandon keeps crawling in bed with me crying scared that Tyler wont be home. Dylan is mad at the world. Telling me he hates gvh and doctors. i try very hard to explain to them everything and I am trying to make them understand and shield them from what i need to, but they aren't stupid, and they see more than I think. I guess I just am not doing all I should. And if I can't get over this cold tyler will be alone all weekend feeling ill. I guess he has a pretty bad cold himself. he wasn't able to sleep all night. They had to increase his cvn and they may do another chest xray to make sure no pnuemonia.
im scared. im scared my family is falling apart and we dont have the strength to recover. these last few days ive realized something i love bob and my boys so much and all i want to be able to do is give them all they deserve and love beyond measure. i need to gain the strength to give all of this and more to them.
im so scared we are gonna lose tyler. he told me mis u yesterday. it surpirsed me so much he sounded like such a young little toddler. i see it in him, i see spark, and in my heart i believe he will get through this but i fear the pain of being let down as this is so serious and so easily can take him away. I know that in my heart I believe he can get through this, but also in my heart and head I know how serious even a simple cold can be to him and how hard it is to protect him from that and how easily he CAN be taken away no matter what any heart believes.
im so scared right now, i dont even know what to do with myself. i feel like i should be there, relieve bob, be with the boys, prepare the house for a hopeful homecoming (disenfect), we are so limited in so many ways and i feel so helpless right now. i wish I could will myself to get well so i can be up there when he is coughing, puking, and crying so I can tell him it will be ok and we will do our best to make him feel better.
*tears* this has been such a long road and will continue to be if we get the chance. we're so tired but we dont want to lose him. please give us all the strength to get through this especially tyty. we're worth it. my boys are worth it. *tears*
Wednesday, February 02, 2005
im still too sick to be up in ty's room but I'm still on the road alot. I crash wherever i can. Ty is feeling pukey today. adno is still present. we've nixed phototherapy from now on. We'll try infliximab if he has flare ups.
bob and i are finding our way back to each other. we just seem to fit.
boys are missing tyler. im pretty tired so i wont write much now, but nothing new to report really. still going as we were before. we're so beat. so tired
