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