www.tytysway.blogspot.com

A site in memory of Tyler. Poems, memories and LOTS of pictures.
I miss you so much tyler. my world is so empty without you and the pain is unbearable. I love you so much TYTY
- posted by Peg Kay @ 19.2.06

 
TyTy passed away in my arms today Dec 30 at 3:20 pm.
- posted by Peg Kay @ 30.12.05

 
Well Ty isn't doing well.
We thought we had turned the corner but it looks like we are going around the corner and going back even further.
He is stooling so much he is in pain from the redness and swelling and constant stooling. His skin has begin to roughen again and appear burnt. Again he looks like he is only a month out.
My heart is breaking as reality has hit me today. Two years immune suppressed. You can only keep them from getting deathly infections so long. Reality hit me today knowing the odds are against us with so much wrong. He is so small I fear I will hurt him. When you are a first time mom you wish your baby can stay a baby forever, I dont. I want to see him grow. He should be playing, running and getting into cabinets. I wonder what he would look like if he was the size he should be or matured the way life intends but this disease has prevented him from.
We may lose the house. We are so far in debt it would take a miracle to pull us out.
Boys are doing so so. Bored is most of their days. Up all night sleep all day.
Bob is not himself and seems to just do what he has to so he can go to bed in hopes of waking up to better day.
Me? Depends on the day. Yesterday I was ready to conquer the world. High on love, my kids, family.
Today? I'm mad he is still going through this. I accept he has SCIDS, I accept life was not normal for us for two years. I dont accept the torture he is being put through. He has served his time let him have some life. Let him enjoy life. I want this god damn GvH to let up so he can learn what it is like to not hurt all the time. I worry where this financial tie down will take us. I can't even afford to put them in school Tuesday. Sigh he money worries me, but if we can't pay we can't. Today my worry is Hoping I still will be raising three boys. I can't lose him. I just can't. I know it happens and its awful in any case. But please not my Ty Ty. Please
- posted by Peg Kay @ 14.8.05

 
We spent another stay in the hospital. He spiked a high fever but nothing ever showed up.
Things are going. His liver numbers are down some. We aren't due up there until Aug 8.
He is still having his chronic problems. Coughing, runny stools, dry skin. Though the skin is getting better.
Going on two years and really feel we aren't getting anywhere. I am hopeful now, but it all can change in a day, hour, minute.
He seems to be getting bigger but his test showed he isn't absorbing. How long ago was it I told the PA and doc i thought that was the case? But now they decided it was their brilliant idea that he wasn't absorbing stuff. I do believe the PA and I discussed the day of his endoscopy. oh well at least it got done. I GuESS? He is still low in weight a mere 14 lbs.
Bob got switched to hourly so we are taking a 200 dollar hit which is why Tyler isn't getting some meds this week. First week we've been affected. Dylly needs to go to the dentist, school clothes need to be bought and I have to very sore aching teeth that need pulled. None of it will get done.
He is doing ok so I have to be thankful for that. and I AM this other stuff still happens tho.
I'm retiring from writing next Friday. lol Barely made a mark and I'm retiring. tough business. lol No, too much else going on.
Boys are doing so so. I'm amazed at how well they are helping each other. We are in a really rough time as far as a family but I'm proud of my family. We're strong
for now?
- posted by Peg Kay @ 29.7.05

 
So much has happened since the last entry.
He bounced back into the hospital and was septic which led ot yet another picu trip. then another two weeks in the hospital.
once we got out he seemed to perk up and his skin felt good and his stools were down to once a day and even formed.
But it is all down hill again.
His liver enzynes are up. over 400. they just keep climbing regardless of taking off the meds that hit the liver. so not only are his liver numbers going up he is now off meds that protect him from infection.
I'm gonna be so heart broken if he gets this far and his gvh is calmed and then this liver thing takes him away from us. im so scared of losing him.
he calls me nana and is talking like crazy. moving like crazy. He has really became his own person.
He is now on 17 hr iv which makes it hard he drug the line to its maximum and it was stretched as far as it would go so i try to pick him up and i trip on it. Causing it to be pulled from his netting. How do they expect him to be on that 17 hrs when he is moving but not old enough to know to take the iv back pack with him?
I'm usually frustrated, but right now I'm really scared. I feel a connection with Ty I cannot put into words. i'm so scared we will lose him. i wish and hope these liver numbers turn around. and he doesn't get an infection in the process.
please don't take my baby away from me. please
the boys birthdays went off well. they had a good time. they have been doing so great.
Bob is tired and worn out. I havent slept in three weeks insomnia hsa struck since Steve's death. Bob I think feels helpless. he wants to help so bad but doesn't know how.
struggling money wise what is new.
i love my boys I wish we could be happier or I could give them all what they need. stability.
i love you boys. we just have to keep fighting. there is still hope. HOPE
- posted by Peg Kay @ 6.7.05

 
Let's see... Life can really suck sometimes. Excuse my language. This will not be a real positive entry. I'm in defeated mode.

Ty Ty started having this awful stools. The docs delayed in adding Imodium A D, but this last week we decided to add it as they were not getting better and he is losing weight. He looks like a little newborn when you change his diaper. I feel like I am gonna break him. Otherwise, his mood, Bp's, temps, everything is great. No infection shows up on the stool cultures, I know GvH but his skin looks and feels great. To be honest I think he feels good because he isn't absorbing the meds they have him on. It is almost like everything goes right through him. He's not absorbing or digesting. I don't know if they can help that or not. I'm just scared we are getting to the point of no one knowing what to do and therefore they will just give up and let him waste away. I got that feeling this last visit. Almost like our appts. are just a formality. Pa came in and I can't describe it. Just was real weird. I think they are throwing their hands up like we have wanted to so many times before.
They did find the thousands of colonies of Psuedomonas which we are doing nothing about. They also found a spot on his lung. Fungus? Scar tissue? Who knows, they said they seen it before (we weren't told, seems to be the trend here lately) and that it has gotten bigger. As usual it is a hurry up and wait.
Sometimes I wonder as the PA calls me difficult, and the doctors are constantly saying it could be this, it could be that. If they really know I mean really KNOW what it is like for a parent to sit for weeks wondering what the hell is happening with their child. There is already that cloud of "your child may die any day" hovering over you.
To Wednesday night. I was planning to make a trip out of town, and Ty Ty just had an awful night with stools. It flew out of him like a hose. I tried to be patient but when I wrote the PA informing him I will not be able to make the next appt. He wrote back and asked how the IAD was working and I said it isn't and that I was quite worried. He thanked me for the update. Leaving me with my jaw dropped. Thank you for the update? HELLO? I asked about endoscopy and a gut biopsy, and anyone who knows me knows I hate these things!! I'm scared of the internal bleeding part which I have unfortunately dealt with in the past. So I made sure to point out that if I am asking for one it might lead some and most to believe I am really worried?!?! He forwarded the mail to our big Dr. G and they followed up and said let's schedule it. So tomorrow at one we will have it done. If it goes well, IF. Then at least we may find a cause to this? Get a grip on his current Gvh stage etc.
The last weeks have been hard. Especially on the days we receive the reports the PA dictates. Although I want them because a lot of times it is the only way I really know what is going on with him, but it is depressing to see all that is wrong with him and easy to want to give up. It always bothers me with some of the comments the PA makes. He seems so in human sometimes. Its like LET ME SEE YOU ARE HUMAN. Understand what it is like to go through this. Or try please?
Financially we are drowning, physically we are tired, emotionally, again thanks to the PA we are pooped.
I'm sorry I haven't updated, but it seems I'm so tired lately along with busy my head just isn't in the writing mode lately.
I will write when we find out for sure what the cause of the stools can or might be. We probably wont know for a few days. Or whenever they decide to tell me. I still don't know what his latest Cyclo level is. I wish they would up the dose as it has been in the low 50's and 60's. Oh well. I'm just the mom, as the PA says, a difficult bitch. He's right though. lol I'm sure most would be in my situation from time to time. No matter what you do they will criticize you. If I didn't do that then they would say I don't care. Which I was also accused of. GO figure.
I hate cancer, bone marrow transplants, hospitals.
- posted by Peg Kay @ 26.5.05

 
We got the weekly report the PA dictates. It basically lays out all the problems the patient has and what the genreal consenses of the last appt was.
Needless to say it is a reality check, and each time I get it... I get overwhelmed, scared, depressed, and I feel completely defeated.
Well, today is no different than the previous weeks except for the fact the list of his wrongs are getting bigger, more serious, and still we have no explanation or fix for them.
I still want these reports because so many times it is the only way you can find anything out. They dont tell you all the stuff that is in those reports. I found out four new things today. I have no one to ask about it right now, I wonder why I wasn't told, and it is easy to get overwhelmed and mad. They wonder why parents get huffy....
Today, my doubts are drowning me. I looked down at my strength and hope bracelet and I want to rip them off.
his little body is full of so many hurdles. how?
- posted by Peg Kay @ 12.5.05

 
A ton has happened since the last entry. I dont get much time to write because I'm dealing with three sick people right now.
They think Bob has prostrate cancer. Brandon has something wrong that they can't exactly pinpoint. Tyler seems to be doing ok. His skin is real hard and peeling again. Really only hard on his feet and red everywhere else. he was in such a good mood yesterday laughing and playing with everyone. I spent the afternoon in doc offices but when I came in he was so excited to see me. i dont get that usually cuz im always with him and sometimes i think he thinks im just a nurse and gets sick of me but yesterday he made me feel good, but he always does that is his personality.
We took him off the cipro. I had no idea i was to take off pen vk when on other antibiotics no one ever told me that. soooo i never did. another screw up in Peg's book of not being able to care for her kids. Anyway after much debate and against my wishes they took him off the cipro which was fighting that serious infection. I do believe it was his body getting used to the med and now we will not only give this bacteria time to hurt him we will eventually have to go thru this again. GRRRR since he was already used to it let him ride the time out on it. it irritates me. oh well. who am i, just the biological mom.
what else? hmm well if all this pans out i dont know what we are gonna do. we dont have much help. my mom saved us yesterday cuz of mary cancelling.
we are so bad off money wise:(( i cant afford to pay my bills. i have hardly any groceries and what grocieries i got last night finished off our last credit card. im so scared. i have three kids and i wont be able to feed them. let alone pay bills. i dont know what we can do. maybe consolodation but it will still give us a bill. i dont know we have plenty of more hospital stays and maybe more for brando and bob. i dont know what im gonna do we have no money literally i dont even know how we will pay for gas to get to ic on monday for his ivig.
things dont seem to be getting better only worse, for everyone in this family.
i'm getting to the point and i know the rest of the family is too. we just have no strength to keep going. we dont know how we are gonna overcome all of this. im tired really tired i keep looking over the bills and nothing seems to give we could give up cable but with the kids not being able to enjoy outside or friends it is all they have i fear they will go crazy if we take that from them.
i dont know what to do. with dylan people showered us with help but i guess they figure we knew and we still got pregnant, surprise or not it is our fault and no one wants to help. including family. i think they see us and dont see all we are losing, or how we dont have hardly any food, or money, or tired and groggy all the time.
We are just hoping we can find some ray of hope that good health will be given to Bob, Brandon, and Tyler.

i love you all my guys
love me
- posted by Peg Kay @ 11.5.05

 
It has been a very frustrating few days, and I am too tired to censor myself, so i am sure I will say things that I will want to take back later. I'm just sick of people, this situation, child illness, people who can have everything and not care about those who dont. GRRR People who say if you need anything call, (FAMILY) just ask, yet when we do no one is there.
Let's start with Tyler. He looks real sickly. I got an email, yes an email, not a call. That his bronch showed psuedomonas. (Yes, it can and is very serious) I read an EMAIL. and my heart just drops. SO they suggested Cipro. Which we were told yesterday isn't recommended for kids. But they have used it on kids before. Ok not making me feel better. In any case, Sunday began an awful day of him stooling every couple of minutes sometimes not even that. Luckily my mom was there and helped me out some that day. I went through 52 diapers that day and that is even taking time out to just let him lay on a towel and go. Yellow, watery, and alot like pee. Well, I figured the antibiotic, because once we finally got someone to find it for us ( a story I will not go into grrr) I gave hima dose that morning. Well, then that night we gave him red pedialyte as I worried about dehydration, and it went right through him. I am not kidding for the rest of the night whatever he drank came out of him. Not to mention it looked like he had lost alot of weight, as he looked so thin and when you picked him up he was like a rag doll, all in a half of day.
So we go to the hospital where we are put in the clinic. What do they say? He's lost weight and looks dehydrated. ok, what now? They dont think it is the antibiotic, they think it is infection, let'sget a culture. Kind of hard to do when it is water and runs into the diaper like urine. So, most of yesterday was tagging my kid up to bags, saran wrap, buckets, bottle liners, sitting him naked on towels, trying to get a culture. The PA, who seems rather preturbed with me right now, hmm dont care, thought roto, it would explain it. They said we will hydrate for an hour then you can go home. Nothing we can do. If he fevers call us.
I'm literally stunned, what? he looks like a newborn, he has lost so much weight, sent us home on no fluids, stooling up to 40 times a day. hmmm what the hell?? I'm driving home, furious, scared, and trying to figure out why they feel no need to act on this. I run in the house once I get home in hopes the Pa wrote with results telling us what is wrong, and I get in my account and yes, he has written, yes, then I see Roto negative. Then what is it and are we just gonna wait til he goes dry? He cries when he goes, and he spent much of last night shivering and not feeling good. he is so small, his little ankles are so small. he literally looks like a newborn today. I wrote back and forth with the doc this morning, as the pa didn't answer. lol Last night the same bright yellow stool that was coming out one end is now coming out the top and out of his nose. He basically asked me how much he was taking in which is 4 ounces as of 11 last night. still stooling frequently, and not a happy camper. No email in response to my last one. He is on no extra fluid... I am so furious with these damn doctors. How would they like it if it was their child they were watching go through this and them waiting for doctors to email only to say there is nothing we can do. what heartless people. I know it is their job but... i'm just really scared i am gonna lose him. last night he was on the floor, and i thought what if we wake up tomorrow and he has passed. I grabbed him and held him the whole night. Whenever I put him down or go to bed I make sure I say I love you because I hope when it does happen it will be the last thing he hears is us telling him we love him.
I did the same thing with Brandon. It looks like it may be serious with him also. So last night he asked a question and I was overwhelmed and I yelled wait. He cried and I felt so bad I ran after him because again, I fear with what he is going through I dont want his last memory to be being yelled at. We found the lump again on his neck. So he is also getting that checked. He will undergo a procedure where he will be put to sleep and have many test done on his kidneys and bladder. To think he is our healthy one. Bob is also getting checked as he has found a lump in his private area. I'm waiting for Ty to wake up, Brandon to come home, and then I have to go pay bills, which I am in trouble as we are over 300 in debt even after pay day, Get groceries, and manage to get the house clean.
Today no one would watch Tyler and Brandon wanted me to go with him, but it was at the time Dr g started writing and bob dont know all the details so I stayed and then I get a call Brandon was crying for me and I couldnt be there with him. I feel like the worst mom on earth today. I do everything wrong, I dont even know my own kids, I'm too demanding when I shouldn't be and not enough when I should. I dont know what to do and the sad thing is I am so tired and worn out I dont feel like doing anything but sit on the couch and say i give up. After yesterday'sappts. and how they handled us 'like who cares?' I just felt like giving up. i still do. i dont know what else to do.
I dont know what is gonna happen the next few days. I am just hoping with all my might he can pull through this and Brandon and Bob'slumps are simple, and curable infections. hopefully something will happen to give us some strength, health, hope, money to live, but then again this is reality so it wont happen.
- posted by Peg Kay @ 3.5.05

 
Where to start...
Ty Ty has had a very rough week to the point I was almost positive we were gonna goto IC yesterday which prompted the bag packing and sitting everything by the door. He is warm at 37.5 and up, and hasn't been breathing all that well.
He puked yellow stuff all day yesterday, so I emailed Steve about Reglan. He said yeah, then awhile later another email, he has colonies of Pseudomonas in his bronch culture. So we start Cipro. But i was so taken aback by all of this and I was... so many things have been so bad this week it was like the last straw. I lost it here by myself. I emailed Steve back and forth for awhile and believe it or not he wrote a real nice email back and I couldn't help but gain a little bit of my hope back. Yes, from that PA. couldnt believe it,i mean probably is doing it so I dont get mad, but hey when life is crappy like this you take where you can get it.
I still feel Ty will end up in the hospital this weekend. I can hear him breathing all the way downstairs. I dont want to give up on him, and I want him here with us, but I'm starting to worry that we are only prolonging things... i dont want him to suffer. i dont want to lose this battle, but I'm at the point where I am scared we will.
boys are not so hot either. Brando is scheduled for a cystoscopy? and an ultra sound, and ex ray as they are still finding blood in his urine without infection. He wants to go out for cub scouts so we are trying to figure out how we can get him to meetings considering they areo n Sat. neither of us available to take him. He also got in his first fight with a girl. Mind you I had no idea they um DATED? this young, but he broke up with a girl and she called him a nasty name. He was crying. I said well, I'm sure you will be called worse in time, but child, you are a child, dont grow up too fast. be friends with girls but dont put that tag of girlfriend on the table yet. Later on it is just a hassle. He laughed. I was serious though. lol
Dylan just keeps saying, why can't we be normal. I said cuz your dad and I had kids together. lol No, I told him life is hard right now but when you go through pain the good stuff is worth more in your heart. He says oh dont feed me that crap mom. What can I say they are boys and mine so I should of expected that response.
I seen my niece she is oh so precious and then my older neice who made me feel so loved that day. sad to say it may be the lsat i see of them for at least two years as she starts her imunizations and im not too sure how that will play in to Ty's situation.
I had a very good friend, come back into my life. I've missed him terribly and I am so glad to have him back because he is my strength. It has helped me through this horrible week.
As for now, I guess we keep going through the grind. This boy is so special and I know if he can get through this he will make a difference as all my kids can. I just hope whoever decides his fate feels he belongs here too.
Bob and I are... back to having a rough go of it. The whole family is. i pray we can get through this.
- posted by Peg Kay @ 29.4.05

 
Wrote in here two days in a row, a sign he's not doing well, because I have time to do it.

I'm really starting to get scared. I called Bob this morning just afraid IT is happening. He just lays there. He slept for over five hours straight yesterday and then when we woke him up for meds he did not fight, which is very unlike him. He took them down and then fell asleep again. He wakes up and he just lays there and stares off into space. His o2 is dropping alot more. Which to me is odd. Dr. G added the zyrtec, and to my surprise I do think it is helping. It isn't completely gone, but I do think it has helped. I dont know maybe now that congestion isn't so bad he is getting a deeper sleep , in which case, we all probably go down in o2 we just dont wear monitors to know. The probe thing burnt him again. So now he has skin off his back from the heart patches, and another burn on his toe, which makes two on each. The thing that I dont get is in the hospital (because these probes are so hard to get) they will leave them on for DAYS! I mean up to a week without taking it off, day, night they are on. NEVER causes anything like this. Yet, we come home and he has it on for four hour increments and it burns him. My mom is taking the boys fishing so I can have time with Ty Ty. Then I hope to spend time with them the next two days barring a hospital stay. I'm gonna try to be able to come home because he seems to well on his numbers when we are home, usually better all round, but not this time.
His blood pressures are good, but again he woke up, did have a few smiles for us, took his meds and then is sleeping and has been for the whole afternoon. I think he looks better in color so I am hoping his HG is ok tomorrow. If it is that means his skin looks good in terms of his gvh.
Time for his antibiotic. I still believe, past my fear, deep down, he is supposed to be here. I hope my belief is right.
- posted by Peg Kay @ 17.4.05

 
Tyler isn't himself at all. He has been sleeping almost all day, and when he is up he just sits in my lap with the occasional wimper.
He isn't the same boy that he was before the PICU trip. There is just something bigger going on. I feel there is something we have missed.
My family is convinced that he never had scids. I'm starting to believe it too. The first doc we took him to said he was fine and had enough lymphocytes, and when IC came back and said he didn't and they were inactive or however they put it. We assumed our other doctor was wrong. Now... I think IC was. I'm with my family on this one now. My ma says, they took a little boy and made him sick.
Bob cried before work. He was afraid to leave, afraid that while he was gone Ty Ty would pass. I had family here all day trying to help, give some emotional support. My mother in law was great. I tried not to break down in front of anyone, but twice once in front my in laws and once with my parents.
I'm pretty tired, I spend my whole day taking care of Ty Ty. Diaper changes every fifteen minutes, meds, antibiotics, cremes, heplocking. I would do it all day every day if I knew he would live through this.
He is quite pale today, but we're hanging in as long as we can. He got a little warm tonight, but his teeth are starting to really pop in. He is getting his eye teeth, which can be very hard on kids.
I sent an email to my friends tonight. Just letting them in on some stuff. I've lost all touch with almost all my friends. Their lives have all changed so much. Most of my friends, and communication is from the hospital now. It's all we can see. Isolation can really mess up your head.
The boys are having a hard time. Yesterday they ran away from my dad's and he found them on our doorstep waiting for us to come home. When we did they had picked tulips and dafodils and laid them at our door way so when Bob, Tyler, and I walked in we walked in flowers. It was beautiful. They are beautiful. I didn't get to see them much today because I was taking care of Ty Ty. I hope to spend time with them over the two days Bob has off. They are going fishing with my parents tomorrow. I hope to spend more time with them and let them know how much I miss them. Hopefully Ty Ty wont stay Monday.
Both the boys made the yearbook in their own pictures. I remember wanting to be in those select few who made the extra pics and my boys did it their first year!
Money is pretty bad. We are living on nothing, and the bills keep coming in. Our main problem is we use credit cards when he is in the hospital. If we could only pay them off we would be in ok shape. But we have four or five maxed and with high payments. We had no choice it is how we ate, slept, and took care of him and things at home during the many many hospital stays. I dont know what we are gonna do. We can't file bankrupcy due to the house and new van. We are in trouble though. Meds keep being added, more machines, etc.
I can't sleep... I lay awake trying to chase away the fears and bad thoughts.
Tonight the neighbors behind were burning and it was blowing right into the house causing probs for Ty Ty's breathing, my ma asked them if they could hurry and burn or put it out and they were very nice and did so. It was so bad in here.
I can see in his eyes he is tired. I'm scared we are gonna lose him... I could see in the PA's eyes and tone of voice the other day, we're... everyone seems to be losing steam. I'm not ready to give up on him:(( I want to see him grow up!! I dont want just pictures of him through the years. I want him here, alive, touchable!!:((
I better go get his antibiotic and cvn ready. Med time too.
I love you all my boys.
momma
- posted by Peg Kay @ 16.4.05

 
I am so scared we are gonna lose him.


Dear Ty Ty


Dearest Tyler
These feelings are for you
Mommy is scared
words are all I have to run to

I'm scared to lose you
Scared I'll forget your cries
lose the picture
of your big beautiful eyes

Fear overwhelms me
will there always be your touch
will I always feel the warmth
from your hand clutch

I want to be able to run to you
pull you against my chest
feel your strong heartbeat
and feel truly blessed

I never want to forget
the smile on your face
I'm not happy with only pictures
taking your place

I dread the what if's
don't want to ask why
I don't want to see your empty bed
while your brothers watch me cry

I want to kiss three boys
as I tuck you into bed
I don't want to pace all night
regretting all that wasn't said

I want to watch you step on to grass
See the wind ruffle your hair
Watch you squint your eyes
as you stand in the sun glare

I want to hug you Tyler
not a stone in a dark cemetery
I'm so scared
Love mommy
- posted by Peg Kay @ 15.4.05

 
well we wont be going home. Turns out there is something wrong with him. Something with his blood and it sounds serious. Waiting to hear more.:((
- posted by Peg Kay @ 15.4.05

 
THANK GOD FOR STEVE RUMELHART!!!! lol

My gosh what a trying day with Ty Ty today. His Bp's were just unbelievable. SO HIGH!! We're trying to figure out why, and then it began... cry, cry, scream, kick himself around, wouldn't let me put him down. He was so tired but wouldn't sleep, and then when we did they needed to get a bp reading and up he was and crying in the process. He pooped about 15 times it seems today. Well, after awhile of watching him put his fist in his mouth and chew on his blanket it finally dawned on my dumb ass to look in his mouth. Of course, three teeth ready to pop through along with one half way through. As Dylly would say, DUH MOM. So most of the day was him crying and me trying to find something to appease him. Then came Steve, we had tried everything with bp meds nothing helped. So he went over the finer details of what the plan will be, and before he walked out added, I wrote an order for morphine for his teeth. Ahhhh, thank you. lol
Gave him a dose, he took a good nap woke up, and while the nurse took his blood I went to the bathroom for the first time today as she was beside him to allow me to. lol We take a blood pressure and *drum roll* 126/65 Sing praise please. lol Morphine worked!!
Ty is puking so off I go. If things are still tomorrow we will go home on ceff. and maybe an extra BP med. WIll upate when I get him calmed down. Love you boys!!
momma
- posted by Peg Kay @ 14.4.05

 
I'm sorry if my thoughts are scattered, but I am so tired. lol I am out of shape. I need to get back to the weight I was before Ty was born. Out of shape and always tired. So excuse my mixed up ramblings. Here's the latest.

Well, we dont know for sure what caused the fevers. Yesterday, Ty Ty's PA, Steve, suggested we do a line study to see if there might be anything sticking in his line. It was a good call, because they do believe they see something at the very tip. Which means? Not for sure. Steve said they will talk it over and see how we will want to proceed. For now, there is some stuff they put in his line, tpa? I think is what he said. I know Tyler has had it before, in fact, I used some at home. You let it sit in the line and hope it dissolves everything in the line that is causing the problem. Now this doesn't mean this caused the fever, but it could be the reason. So tonight we will put some tpa in his line, Steve said maybe a couple of times, do line studies to see if we made any headway. We have always had more trouble with the white side and it has started again recently, maybe this is why. Anyway, if we dont dissolve it we'll see what they want to do. Dr.G will be up tomorrow so we'll see what he wants to do. Sometimes I can guess what they want to do, but he is always a wild card. lol Just when I think I know what he might do he surprises me, kinda like Ty Ty. lol Steve has kept me well informed. I seem to deal better when I know what is coming even if it is not what I want to hear. I just hate things just being sprung on us. I need a chance to adjust, cry, and then deal. Steve is good at keeping you informed. This place would fall apart without him up here.
Ty Ty's blood pressure is outrageous!! 170/105 we do have it down to 135/ 89, but that is after we gave him an IV Bp med. He was dry, so Dr. Radhi gave him some fluid which usually makes it go up, but since he was dry... I dont know. He just hates it up here. He doesn't sleep well, eat well, or even act himself, but then again he hasn't really since the PICU trip. I just can't keep myself from thinking there is something bigger going on that we are missing.
He is starting to talk alot more. He is starting to really show attitude. Steve listened to him this morning and he started crying like he hurt his feelings and he continued that all day. Whenever the nurses did anything he would cry like they hurt his feelings.
He is feeling better tonight he is blowing kisses to me now. lol He also has two new teeth coming in so maybe that was some of the temp. I doubt it would get as high as it did though. I dont know...
Steve said IF cultures are still negative, 72 hours (Friday) we would be able to leave. (Depending on alot of things, the line situation, BP, and TyTy likes to pull tricky stuff)
Dylan is having a hard time without us. We need to get Brando back to the doctor. My boys got an award this week. I am so proud of them!! Dylan collects tabs for the Mac House, and Brandon packs them in the boxes. Bob and I sometimes forget how hard this has to be on them. Dylan just breaks our heart. Last night there was a flood watch and he calls me at the hospital, mom are you in Johnson County? I said yeah, and he started crying and saying he was worried about us being in the flood. I said Dylan, we are staying at the hospital and we are on the third floor we will be ok. He says mom flood water is cold and Brandon cut your coat. You have no coat, you'll be so cold. It broke my heart. brandon got on the phone and said I will miss you beary much. He always says it that way so cute.
Well, I need to get back to Ty Ty. Here's hoping that the sheeth, sleeth or whatever the PA called it dissolves with ther TPA, so we can keep his line, hope nothing shows up on the culture so we can go HOME!! Everybody up here is great, but I want my own home and bed with all my kids in one place, and Bob and I back on track! Hoping for Friday, preparing for longer.
I miss my boys... this is frustrating. I want my family back together...
- posted by Peg Kay @ 13.4.05

 
We're back in the hospital. He had a pretty high temp. Things are real scary right now. We had no money but got some help from the hospital and my friend becka got my friends together and they all chipped in and got us some food to eat while we are up here. My ma in law and my dad are taking turns taking care of the older boys.
we dont know what is wrong. im scared. Bob had to go to work today so im here alone waiting... waiting to find out what is wrong and if he can get over it. im so scared. i miss you d and b. ty keep fighting. its all the is in my head right now. missing my older boys and hoping ty can get thru this.. yet another huge bump in this road. or we hoping that is all it is.
- posted by Peg Kay @ 13.4.05

 
Where to start...
Tyler is home now. He was released on Thurs. He is still having alot of troubles. Puking being his main one right now. I cannot keep meds in him for anything. He has alot of congestion and despite attempts by the docs to move the ickiness thru and added stomach meds to eat the acid up he is still coughing, gagging, and eventually puking. He is requiring alot more o2 for this also. Needless to say it is hard for him to eat with this nagging him. Which brings to question Dr. G's constant urging to have the G tube inserted. We've made our list and medically we know it would be wise but as parents we just can't bring ourselves to do it. It is very easy for family members and doctors to say oh do it. Well, you wont be taking care of it, or watching to make sure he doesn't pull it out, or dealing with it if it becomes infected, or sitting up there for the week or so he will be admitted to have it done, nor sitting and worrying about him as he is put under general anesthia. (he is not a good candidate for this, another drawback)
We have ran out of vacation time, and we are drowning money wise. Something has to happen soon or we will lose the house or not be able to feed this family. The bills are piling up and we have no way to stay afloat anymore. We've treaded water for along time but we are drowning. No resources now to help us.
Tyler isn't himself still. He is still quite fussy at odd times which is odd for him. He does play though. Started to go all over the place the other night and crawled under the chair. His skin is all broke out again and is drying out despite our constant lubing. Hair is falling out again. He is bright red and has an awful diaper rash that I have had a hard time trying to clear up.
Bob has been a great help to me. When Ty was admitted I took a trip to the hospital myself where I was IV fed due to an electrolyte inbalance, had low blood pressure and was said to be exhausted. Once home I slept a whole entire day. I would almost get delirious and just drop and Bob let me sleep each and every time. Taking on all the responsibility for the day. That day of sleep helped me so much!
We had a meeting with Dylan's teachers yesterday and by gosh he is doing wonderful and they were telling us how popular he is with the kids and how smart he is and how well he is doing. I was so proud of him. To think 8 years ago Docs, and therpaist were telling me he was mentally challenged. HA! I knew he had it, he just needed help expressing it and now look at him! His best subject is reading!
I'm afraid Dylly is our only good news.
Brandon, has a lump in his neck. Which any BMT mom knows this is something you dont want to see. So he will be taken to the hospital tonight for test. I have cried all day in fear they will tell me the worst possible news. I cried to Bob, we are gonna lose all our kids. I'm so scared. I cry now just in fear it could be what I fear it is.
Also, my step dad was taken to the hospital to spend some time because he might have heart troubles. I was relieved to know it wasn't a heart attack but they are doing heart test to see what it could be.
And during my sister's pregnancy they found some cancerous cells in her papsmear so more worry as we wait to see how serious this is.
Also, we dont know if Bob will even have a job because when he called to see when he worked the girl he works with gave him the wrong day which means he was supposed to work Sunday but didn't know it. SOOO, we have to wait to see if he will be terminated over it. Although the lady told him wrong I'm afraid they will say it is still his responsibility.
I tried to stay positive but it isn't working. I dont know how we are gonna get through this... I dont think we will....
- posted by Peg Kay @ 6.4.05

 
Well, I am too tired and sore, but Tyler gave us a horrible scare. He was feeling ill as everyone knows. We went to clinic and Dr. G and I were pretty convinced it was viral. Steve suggested a chest x ray but Dr. G said nah. So we went home. Even during the appt he seemed to perk up and seem to stay that way all day. Then that night he stopped breathing, he turned grey and blue and was kicking and flailing his arms. We called Iowa City. Septic shock. It was what I was thinking. I was convinced it was a bacterial infection, even tho there were no fevers... We hooked him up to o2 probe and he was 88, 87, 86, 85 kept getting lower and lower we hooked him to o2 and the doc says go to Monmouth so you dont waste a trip here. Me, knowing there was something wrong said I would rather go to Iowa City. We take the o2 tank and I sit back there holding it to his mouth. He turned blue again, stopped breathing so we take a left and go to Monmouth(very scary local hospitals are not used to these types of cases) where he spiked, had a chest x ray, and screamed I die and I'm done, and between the BMT doc and the Mon er they decided to air lift him to IC. He was not stable. Nothing is worse than seeing your baby's eyes as they wheel him away into an air craft. We had to stand back due to power but even as far away as we were I could still here him crying. I cried. I knew in my heart he would go to bmt get two weeks of antibiotics and be better. Our normal routine. We get to the hospital at 3:30 in the morning and they say he is in the PICU. (peds. intensive care) for those who know about Dylan know there are so many horrible and terrifying memories there for us. We go to the desk and they said Tyler's parents are there they said they cant see him yet. I said what are they doing that we can't see him??? We wait around watch the doctor come out and eat a brownie before walking over to us, (then i hear they cant stay long because we are gonna insert an art line (didn't happen, I refused) as we walk over I see my baby's lifeless little body on a vent ( life support.) For that moment I went back nine years and seen Dylan. It wasn't a flashback it was real. Again. I freaked. I yelled at the doc even threatened a lawyer. Then he said, I'm so sorry, we waited as long as we could. His blood gas was over 718 most times babies stop breathing at 600. He said he was in septic shock and respitory failure. He was dying. He would of had we not put the tube in. I lost it. I lost it. I cried I was so scared. Soon I seen a familiar face. The Nurses asst. that took care of Ty when his line was put in is now a PICU nurse(yes that is how long we have been treated there ) she handed me a kleenex and said do you want to hold his hand? I said yes, I went in and he was lifeless. tubes all over. I cried and told him I was sorry and to be strong and i wasn't givin up and I begged him not to leave me. I got ten minutes sleep that night. I watched as the machine breathed for him. Watched minutes pass and watched him fight fading away.
The next morning the PA , yes, the one I complain about, came in and rushed right over to comfort me and said we'll get him through this, and as much as we have been thru arguing I still believed him. Dr. G came every day he was in the PICU. Made sure we were getting sleep. I truly felt for the first time they care for my son and us. Many BMT nurses visited us to see him.
We took the tube out on Wed. the first thing he said with a hoarse cry he said Dada. We know are in BMT where he as consitantly dropped in o2 and is spiking fevers. He tested positive for hepa flu and we hope antibiotics will help him. His eyes were swollen from an infection to the point you could not see his eyes and now they are bleeding. We are just praying he can get through this.
I better go laundry to do. Hopefully well be home soon and he will be better. Pray for my baby boy Tyty. He is a fighter and has the most beautiful courage. To all three of my boys I miss you and love you.

Momma
- posted by Peg Kay @ 25.3.05

 
Well, the last few days Tyler has taken some steps back suddenly.
He has been verging on a temp, matted eyes, coughing, puking, not smiling, sleeping abnormal amounts of time, Not keepingmeds down. So here I am packing as I see we may be making a trip to Iowa City or staying tomorrow as he usually picks clinic days to pop the full blown temp on us. The older boys are upset because of easter, but we will make do.
It is odd because I was filling their easter eggs earlier this week and it took me back to last year. We were in the Mac House and with everything going on I had forgotten to get their easter baskets and the candy for the eggs. So earlire this week an egg falls open and out falls looney toon fruit snacks. Why? because that is what I found to put in their eggs last year. It was saturday night, no car, and no easter candy for the eggs. I used magazine baskets in the mac house for their baskets and I put fruit snacks I had found in our cabinets to put in their eggs. Now, this year as I am preparing or trying to he is sick and will likely land in the good ole second home of ours... the BMT ward. Which room will we get? Who knows been in all of them at least twice some three times.
It was a bad morning full of puking and coughing and much laundry and I sat the boys down and I said quit screaming and Im not asking you to help me clean up just stop making messes. Next thing I know Brando is washing dishes, folding towels and putting them away catching Ty's puke if I was elsewhere, taking his temp when I was busy. Brando is an amazing kid. He really is. I feel he gets lost in all the SCIDS surrounding our life but this kid is amazingly very adaptable and with such a huge heart keeps us going.
I decided I would write to inform everyone we will probably be up there for awhile depending on how this plays out so I wont have immediate access to email etc. Someone will be here for mail, messages, etc.
I dont know how we will afford this since we are -453.76 as it is. But as usual our only worry is... just let this not be THE ONE that takes him. Let him overcome it.
Steve I know you are sitting on your cloud up there looking down wings in tow, please give us all but especially Tyler the strength to get thru this. You know I am not religous, but if there is an almighty up there tell him Ty isn't ready. he belongs with us.
I have to get packing again.
luv u boys we will get thru this.
momma
- posted by Peg Kay @ 20.3.05

 
My sister just had a baby. So, when people call and ask how Ty is doing what do I say? If I say he is good that isn't the truth. If i say what is wrong they dont want to hear it. They want to be in happy land with the perfect daughter and her perfect healthy children. I would too. So what do I do? Lie and say everything is fine so they dont think I am trying to disturb the happy little vibe going on? Or tell the truth and be told I'm sucking all her happiness away. They didn't feel the need to tell me she had the baby so maybe I shouldn't feel the need to care. But I do.
So what do I do? I'll just ignore everyone. lol Seriously my mom is the only one that calls or cares so it will be easy. I wont answer her she'll get mad then I'll get mad and we'll be fighting. I'll be covered for awhile. lol
Tyler has this weird gunky stuff coming from his eyes. it is so bad it floats on his eyes. I thought pink eye but besides puffiness it isn't real red or blood shot. Guess we'll ask Dr. G Monday. He has been restless and we had to use nasal o2 last night so he isn't all too pleased with me.
The sad part is now he says bad or I'm bad whenever you try to give meds or anything so Bob and I just cry. HE THINKS WE ARE DOING THIS TO HIM BECAUSE HE IS BAD?! *tears* I wish he could understand that if that was the case D and B would have had to take a whole drug store yesterday. lol Seriously tho how awful is that? *tears* I just keep saying you are doing good a little bit more and he will shake his head no. Every time we get done. I say give me five and he will and then I say TyTy one day closer , one day closer. Closer to what? I hope health.
Brandon cut his hair AGAIN! So he is basically bald. The teenage girls love it cuz they stand in the bus line and rub his head. Dylan just wanted me to trim his. I said step up what do you want? he says, not what Brandon has. lol Ok. That is easy. Bob has presented me with a doctor order. I've been so tired lately. I can't even muster energy to do laundry or anything. He says you need to go to the doc. ok. What did he say? Slow down you are exhausted. REALLY? He says can you cut down your daily activity? Hmmm lol he didn't even mention i need to excercise because I am a whale. lol I said this to him, "three kids, one critically ill, immune supressed, weekly trips to IC if not in the hospital with him, hubby working 65 hrs a week. He looked at me and said, no you can't. BINGO. lol I said jokingly. I'll tell you what when I give him his meds I will actually sit down when I do it instead of running by and shooting them in his mouth and hoping I hit the target. lol He said good sense of humor. I siad you have to with three boys. He went into his mom having three boys and it takes a special woman to do that and I said crazy? cuz thats what I am. He laughed. Prescribed many a vitamins and sleeping pills which I cannot and didn't get. Thanked me for making him laugh and I headed back to my world in the bubble. Ahhh safety. Away from the world. It was home. Comfortable again.

As I said I cancelled easter. I feel bad because my mom had glasses and bunny ears for the kids and her. but we are so tired and the germs from a new baby it is dangerous to Ty.I dont really get along with my family with the exception of my mom, my step dad but I never see him. Through all of this nobody has even called just to check to see how Ty is. I let myself feel bad for a moment and then I said, wait, have they even been around for all of this with Ty? no. so why should I waste what little time i have on them? I wont.
Tho it hurts my mom she is still planning on coming up Sunday and she has been real supportive thru all of this. More so than I thought. I thought she would be mad, and telling me what a bad daughter and sister I am, but she has not.
I feel bad enough bout our situation without reminders of how others get to live. My bro and sis are so far different from me and we usually dont talk unless it is a holiday. they pal around and always have as they got into the same circle of friends and are closer in age. I just was the annoying mother like sister. During family gatherings I am just there. Taking up ALOT of space. Thing that bothers me bout this is I doubt once my parents pass I will even have contact with them. To me that is sad.
I tell myself not to feel guilty but I do. i'm a mess inside emotionally. sometimes I wonder if Ty deserves better than me. The PA always says what a difficult and horrible bitch I am and I wonder sometimes if I should be better for him like the other mothers the PA says are so much better than me.
Ty is crying I better go. He hates that nose o2. I may just hold it in front of him so he can sleep.
- posted by Peg Kay @ 18.3.05

 
Tyler is doing pretty well today. He is all over the place and getting into stuff. He does have some weird greenish, yellowish gunk form his eyes. His stools are better so Dr. G was right on. I tried some more therapy. We call it the standing tree, it is basically a child's walking toy. But he just cries, and cries. It hurts so bad.
I'm pretty worn out today. I'm just so tired and I can't get energy to even move about in my day. I'm so tired. I'm missing my Steve pretty bad (not the PA we have now lol get that thought out of your head lol) my steve. I have trouble even looking at baseball. I remember how excited he got when I landed the gm interview. I miss him. I've cried endlessly over him the last few days. He helped me out so much with Ty. Giving me the ear and strength to get thru it. He was one of the first people to look at him and not say something about how he looked. He says, "he looks just like you, gorgeous." Yes, h e could lie too. lol Ty is gorgeous but I'm hard on the eyes. I miss him. Alot.
My sister had a baby girl. I can't remember the name now. It was odd. All is well from what I hear. Altho no one informed me of anything.
I didn't realize how angry I was that Tyler was ill until her baby was born. I can't explain the feeling. I dont wish for her to have an unhealthy baby. I want her to have a healthy baby, but at the same time I dont understand how we came from the same gene pool and she got the break and I didn't. I dont want her to have a sick baby... i just want my Tyler to be healthy. I'm having one of those days of I dont think he will ever make it through this with health.
I bailed on easter. I dont think we could take seeing a healthy baby or have to worry about all the people and all the germs, work, putting on a fake smile. I dont have the strength to pretend i'm positive and "oh we'll get thru it" "there is a reason for everything blah blah. the usual stuff I say in hopes it will keep me going.
Well, it has been one heck of a day here. I've been packing stuff up. They found bacteria in our carpet so we have to get new. Carpetland worked with us due to our situation and helped us out some, but now our car is crap. The drives to IC are too hard on a car. Anyway, so I have to clear out two of our biggest rooms and the whole upstairs. I'm tired. so tired. i love my kids but I'm having trouble getting the energy to even get up in the morning.
luv u boys
momma
- posted by Peg Kay @ 17.3.05

 
Well, Tyler was in Iowa City Monday. We talked to the dietician, She doesn't help much because we already do what she tells us and anyone who has been on a diet (which I have so many times) has all the information a dietician gives. He is on the low end of taking in all his calories on his own. But between GVH, diarrhea, and his disease in general he is not absorbing or is requiring extra calorie intake to keep himself going. Why he is not gaining weight and still requires CVN.
We also seen the G tube and what it would look like etc. Let me just say everything the doctors told us about this was wrong. It is not flush with the skin, it does stick out and it falls out. She says if it falls out just stick something in it like a straw or something. My eyes must have been huge because the nurse laughed out loud and made a comment about how I should see my eyes popping out. Anyway, this tube is longer than his leg she says just tuck it in his diaper. LOL with his stools? What a mess. They would cut open his tummy or put it down his throat (this is not fun folks I seen him have a throat scope and it is not pleasant. I will never NEVER allow that to happen again unless it is life and death) Here I thought I was gonna have to be the difficult b(*&^% again but then I looked over at Bob, my loving husband again, and LOL I didn't have a chance because he said there is no way in hell we are putting that in him. I said I tried to tell you Bob. The nurse didn't want us to do it either. BUT we listened and had an open mind so the doctors or PA can't call us difficult and uneducated. lol Well, they can and will but...
Let's see, he may have to have an endoscopy. I hope Steve knew I wont give permission for a biopsy but only the endoscopy itself. Last time he bled so much afterwards. He don't need that. Anyway, the reason for this is his stools have been pure water and green and up to seven or eight times a day. Dr. G recommended a steroid bolust and I don't think this has helped so much. If anything it has made him icky which steroids can do. He has also had trouble puking, but we think that is oral steroid related. We switched from IV to oral and the taste is bitter and icky and he will literally put his fist in his mouth to puke it up. So we asked for a pill form and we dissolve it in water cuz it doesn't seem to taste so bitter. and it worked. He took it well and no puking. Some of his puking may be due to his congestion. He has so much snot and mucus in him. It is unbelievable.
They made an appt with PT next week. Altho he has started crawling they wanted to get their take on it. We humored them but I don't take anything PT says serious because he is a baby and whatever pt can be done with a child is already being done and more. I did this with Dylan and the guy came and the first words, "I don't know how much a child his age will get from this, basically you do all that can be done so keep doing it." Ok I paid him 700.00 to tell me that? Ok, lesson learned. lol I will listen next Monday but I will not get suckered into paying money for something I know how and can do by myself. Besides, TyTy will not walk until them steroids come off. He is a 15 pound baby who shakes constantly due to meds. It aint happening. BUT I do keep all exremities moving as I should. He has learned how to play catch, stack things, place objects into given openings, he is all over the place moving, crawling, rolling. I have taken what I learned with Dylan showed the older boys how to do it and we all work with him. Less infection risk, (around people he already is on a daily basis nobody new) more comfortable, and it is free! You know babies, they can do things but then you get them in front of people and they wont do it. Now an adult you could say walk here, or go to the end of the rope, or push and pull your legs, with a baby it's move your legs, snot blows out their nose and they laugh at you because inside they know entertainment is coming in watching you try to get them to move. PASS. lol
They were overall pleased with how his skin looked wished his stomach was doing better. Dr. G wanted reglan but as Steve and I talked (Yes, we talked in a civil manner, scary huh?) how was I to tell if his stools were calmed down from the steroid bolust if we were giving him a med to make him poop? So we decided to wait and see if the stools got better and then if he was still puking I would administer the reglan.
I thought his bp's were so high last week? dang bp cuff. So we go to get a new one yesterday and we waited in the car for over an hour only to be given the wrong cuff. BUT Option care made a special trip out to bring us not only a new cuff but a new machine so it was ok. They are nice and good to work with. It has to be hard having this sick of a child who needs such specific needs. Because tho they are a medical supply most of their stuff comes from other people too. So if they can't get it they can't give it to us even though we need it. Now his bp's are a nice 90/40-50. Perfect!
He felt pretty icky yesterday in the morning of course but then come midnight he is still going and going and going. Mornings just stink for him. That congestion sits in there and just drowns him.
The car is going cappoey. Bob looked at a new 05 ford focus but he brought it home and not only did it have leather (three kids?) it was too small and to top it off it was yellow, I said eh uh take it back I would rather walk than ride in that yellow alien car. Plus payments were gonna be over 400.00. 400 fine but for that? no way. for 400 a month I want nice. lol Bob says I knew you wouldn't like it. THEN WHY DID YOU BRING IT HOME? he laughed.
Boys are having alot of trouble. Dylan told me he was mad at Brandon because he wasn't sick. Brandon is mad because Dylan gets attention because he was sick. They are saying this crying and I don't know what to do. I don't know how to even it all out. With TyTy I can't. I have to do what I need to keep him well, so if it means hours on end on the floor giving meds, temps, bp's, pt, I have to. I just don't know how to make my older boys know (even after telling them and going out of our way to show them) that we love them both. They fight over who sits where, who goes first, and it is more than just normal kid fighting, I mean Brandon will just cry because Dylan don't want to play with him. For Brandon things come easy, I understand this. I understand Dylan's view because I had it too. Like now everything comes easy for my sis, healthy baby, here you go. Everything just falls in her lap. That is how Dylan sees Brandon, he has a good personality and he just blends everywhere. Where as Dylan has to work so much harder to do and get what comes so easy to Brandon. BUT how do I make sure that I dont take away from either of them what they are meant to be. I can't hold Brando back, but I can't be insensitive to Dylan. Being a mother is the hardest job there is. People come down on stay at home moms, oh they are lazy, they dont want to work, but I would take mopping floors at a gas station or working on writing deadlines til the next morning rather then try to balance all of this only to fail. BUT they are my kids so I do it. I guess what my point was supposed to be is it isn't easy being an at home mom either.
Things will seem like they are falling in place but then everything falls apart.
I can't keep up with friends, or calls, or emails. I was so tired the other night Bob said he was talking to me and I just passed out. He said I was out cold. Wouldn't move, he said I scared him. I was just so tired. I have no energy to do anything. I'm amazed I wrote this.
Sis is due any day now probably today.
We were supposed to have easter here with the fam but Bob and I dont know if we can handle it all. Not only the mess but having it rubbed in our face that she can have healthy babies and we can't. It is just really hard knowing Ty could be living normally without pain. You see a healthy baby and you yearn for him to regain health so he can feel that way. Let him see what it is like to feel good enough to play without tiring or not having to choke down meds upon meds or being hooked to lines, or choking on snot because you are so swollen. I probably sound awful but I dont have the strength to be a liar right now. I try really hard to say that is her and I'm glad she is having a healthy boy and I AM but I want that for Ty. I try to be a good daughter, sis, mom, wife, but my heart is having trouble knowing that that she got the good genes and I got the bad ones and because of it my babies suffer. I wouldn't want hers to suffer either dont get me wrong I guess I sound bad no matter what. Why couldn't I had gotten good genes too? If I could only know that he would live through this and see a normal life....
I'm tired and have alot to do. I guess I better get it done instead of writing in here.
Days are scattered. Up one hour, scared the next, mad after that.... just force ourselves to get thru the day.
i love you boys
- posted by Peg Kay @ 16.3.05

 
Well, Tyler has been really picking up things. His motor control and his mental development are soaring. I think it is partly due to having the steroids so high and in turn calming the GVH which makes him feel so much better. He is just a performer. He was taking a syringe with his meds in it and putting it in his mouth like a cigarette. (tho he hasn't ever seen anyone smoke it is just an observation to describe it to everyone) He now gets up on all fours but I don't quite think he knows what to do after that. He plays catch with a ball and does real well with the hand movements. Tho he is 1 1/2 and most people take these things for granted but every thing he does big or small we are just so thrilled about. Today Brandon had a box Tyler wanted it so he rolled over the whole WHOLE frontroom to try and pull himself up to it. I was amazed. Altho most kids his age are walking and have been our son does what he can to move around and I'm proud of him. He shakes very much you can just see the damage the meds and treatment have done to him but he is so strong and it doesn't bother him. I see it in his eyes. I see his determination. Today, (that being the word) today, I feel that if his fight was enough to bring him to health I would have no doubt he would come through this. Unfortunately, there are so many factors that will, can, and do determine his fate. I seen his strength today.
Although he has been in such a great mood, his blood pressure has been thru the roof today even as high as 140 over 88. I contacted Dr. G and Steve and told them of the blood pressures and they went up to a higher Cap. dose but he still is on the high end which is to be expected due to his high dose of steroids. Just have to keep it under control. I find it so odd when we are in the hospital they freak over the BP. one point over and they are giving them doses and doses of BP meds but when we are home they are like Ehhh. I did email back and forth with the PA and that went well. We talked cordially to each other last appt. I went in with the best acting possible. I deserve an oscar. lol No bad feelings were present that day and I just smiled and answered his questions... in my head I was like you called me what? well you are a *^^%$%$@ lol I will put up with it why? Because, as much as some of us who have dealt with him dislike him as a person he is GOOD at his job and right now he is best for TyTy. He is not much on the personality side, and I don't think he cares a hoot about TyTy but he is thorough and knows about everything there is to know about TyTy even when he acts like he don't. The one thing helping me deal with him is I stopped caring what he thinks. Before... It is hard to explain he has pull with the doctors and when you are a mother of a critically ill child you do so much more than a normal mother does and it is stuff most people are trained for so I want to do a good job and if I don't he will be the one saying, oh he may need to stay longer mom can't or doesn't do well doing that at home. They need to know I can handle doing the things that need done with TyTy and I am so scared they wont think I'm competent enough to. He will decide that and relay it. It is his job. So I always worried what he thought. Now... Who cares. The doctors know me by now, and who is the PA? Will I see him once TyTy is better? no. Will I think of him? Hell NO! Why do I care if he thinks I'm uneducated, difficult, hard to deal with, irrational mother? I don't anymore. I think they know what I can and can't do by now without his opinion and if they don't they probably never will. Nuff time wasted on him. I would though really like to just have a conversation with him outside of all this. Just to see what he is really like. There has to be a man inside of all that stiff, workaholic, and uptight exterior. He interest me. Not in any manner other than just trying to figure him out.
The G tube... The endless debate and convo in this house. To do or not to do. Mama says NO. Steve wrote today in response to my email and seems for the first two months the tube will just hang out of his stomach. How do they think he wont play with this? He flips his C line as it is. My main concern he will not tolerate feeds and then we will have went thru surgery, risk of infection, for nothing. Other concerns that aren't real important but still bothersome. This is a 15 pound baby he already has a huge c line in his chest add another tube and his whole trunk will be covered in tubes, will he still try to crawl? Plus, and this is hard to admit as I say I will do anything for him as I will if this turns out to be what is needed, but ITS GROSS and I'm so scared I wont be able to take care of it. What if I am so scared to touch I don't clean it well enough and it gets infected, or I can't watch him 24 hrs and he pulls it out. What if he does? What if it gets infected? They keep saying we'll go to that and you wont have to get into his line. Yes, I will you still have to flush it everyday. Altho if he can tolerate the food it will eliminate cvn which is a big step but there will still be risk of line infections.
The sun was out and I took Ty to the window today his eyes were so big watching the outside. To think he has never seen that stuff. I'm having trouble dealing with the situation. I'm being selfish. I want him to be healthy and playing like kids his age do. Right now my heart is so sad for him and our family. I need to find something to get me back up again.
Anyway, I can't believe I wrote this much as I'm beat today.
The weight is piling on and I'm miserable feeling. We're so tired, the boys are just desperate for attention and I'm desperate to give it but I am so tired. I feel so worn down and all I want to do is sit around all day although with three kids even when you want to you don't get to.
It is late here so I better go. I'm so tired my eyes are fogging over.
His eyes, they are so beautiful. Tonight we ate frozen pizza lol and all went around the table and said something nice about each other. It was sweet what the kids said. Bob says tho our life is unstable due to Ty's illness we are doing something right. Though we have moved the beds all into the same room each night both kids end up in our bed with us. Little queen sized bed with five people in it. Bob says they still want to be with us and know we love them. We are doing something right.
I hope so. I don't feel like we are.
love you boys with all my heart
love momma
- posted by Peg Kay @ 9.3.05

 
People have been after me to write an update and there is alot to update but I am too tired. I'm sorry.
we are doing just what we need to do to survive.
I had a root canal and it was extensive so they gave me vicadin. What I realize as I take this is... I'm not supposed to feel so worn down, tired, miserable. You never know just how bad you feel until you feel good again.
Needless to say my Vic is all gone and I'm back to being tired and sad.
We're struggling to get thru everyday. Put on our fake smiles long enough to go see Ty's docs and see fam members for a few hours each week. Then we come home cry, worry, and hope that we still have all our kids by days end.
As much as we try to tell ourselves love is more than money it doesn't set well with bill collectors, and as much as we try to tell ourselves we will be happy with two years of Tyty we want more.
Every day he is here is a blessing but we are selfish and want more.
Ty is holding strong. He has been in a wonderful mood and is coming out of his shell altho there is extensive medical probs and alot of decisions to be made. we are trying to just hang on to him as long as we can and he has been so cute and wonderful to be around.
He is the one in pain yet he is the one keeping us smiling. He really is the glue to this family without him we will fall apart and scatter.
Life is not fair. Yeah I know no one said it was but no one said it was gonna be this hard and heartbreaking either.
- posted by Peg Kay @ 8.3.05

 
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
- posted by Peg Kay @ 25.2.05

 
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.
- posted by Peg Kay @ 24.2.05

 
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.
- posted by Peg Kay @ 20.2.05

 
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
- posted by Peg Kay @ 20.2.05

 
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
- posted by Peg Kay @ 20.2.05

 
The closer it gets the more scared I get.
I'm terrified right now!
- posted by Peg Kay @ 19.2.05

 
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.
- posted by Peg Kay @ 18.2.05

 
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
- posted by Peg Kay @ 17.2.05

 
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.
- posted by Peg Kay @ 17.2.05