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