well, i'm too tired to go into major details but we were dismissed on May 6 only to beback in again today. tyty had a rough night and was very fussy all night and into the wee hours we checked his vitals every 15 minutes until 9 this morning and they were all fine and in between the drive from the mac house to the hospital he spiked to 101.5 pretty high. we did cultures and are waiting.
i had a friend coming up this weekend so it stinks she will see him like this but i think it will be nice because im at a point where i feel like this is never going to end and i need some kind of support no matter if it is distraction, a shoulder to cry on, or just some good ol' talk. and this friend is just the gal to do that for me so i wish we were having a better trip since it may be the last time we see each other due to changing lives but im glad she is coming because i could use it. it may sound selfish but i seem to be that way here lately. i want my baby to be healthy and home and it is all i care about.
we had a nice week home nonetheless. we traveled home yesterday and he seen his home for the first time. we had to keep him covered and masked but he seen his old swing his house and his yard. we put him in his swing and its almost like he knew he just smiled and cooed and he loved the tv which is bigger than ones he has seen so far. he just loves his brothers he could watch them all day.
today as i waited for the doc to come in tyty was crying, i was crying, dylly was crying, and i looked down at him and i just felt my heart literally break it hurt so bad to look down at him hurting and knowing "I" did this to him. the fear of this being an infection that could kill him or that it may be the last time i hold him or the last time my family will be together overwhelmed me and the fear built up so much i was dropping tears i had no idea were coming out. i looked down and a tear bounced off my cheek then off my sweatshirt and onto his nose and then i watched it fall down his cheek as if it was his own. i followed that tear until it fell into the folds of his puffy neck and i dont think anyone will ever know how much fear and hurt was in that tear.
people try so hard to help or to say that right thing and i feel bad for anyone who tries to find words to try and help..there just arent any, there is no greater fear than knwoing any day your child could be ripped from your lives forever
there is just no greater fear...
we're wrapped in this fear, in the middle of this fear, and it is only getting worse. i love this child so much. he wasnt planned he was our pleasant surprise. we may not have planned him but he was meant to be here he completes us and i dont want to lose him. he brought the sunshine back in my day he is what made me smile again and im so damn scared we are all going to lose that. i dont wanna lose my baby and noone will tell me i wont because they cant
and it hurts.....
- posted by Peg Kay @ 13.5.04

 
Today brought so much to pass on.
First of all the kids are with me today due to no babysitter. They have overall done pretty good but it is still very hard to keep up with Tyler's needs as well as theirs seeing how Tyler's are such are so important and timely and the nurses depend on the parents because this place is packed full so I need to be able to do his meds and daily c line change now altho the nurse did it today cuz it is so critical at this point and I was doing his bottom area. But they have done pretty good they are restless now but I dont want to leave Tyler. I hate leaving him by himself cuz he just sits in here everyone says you just have to do it well im forced to but i think it is awful and NO parent should have to do that. I just wish we had more help. it sucks to leave him.
We came in to two bags of things to keep the boys occupied i dont know for sure who did it but i imagine Kathy from child life knew I would have them and sent them and it helped too. But for kids this has to be boring. I'll have to think of new ideas for tomorrow. I just hope he gets out of here soon cuz i dont know how much more of this i can do in every capacity.
Things have changed some for Tyler he has some very bad breakdowns of his skin on the bottom and the c line so bad the nurse said she has never seen anything so bad. We have some special cremes so special some nurses refuse to make them cuz they are not a medical remedy. They have put him on cingular due to his asthma or respitopry probs i guess the nurse and i arent sure. lol probably dr goldmans doing. bet anyone a thousand bucks it was him. Anyway, we think it is coming out and into his stools cuz he has had pink chunks of bubble gum looking things in his diapers we dont know if it is skin or the med. we dont think it is c g positive cuz his stools have actually been negative which is a huge thing for him. first time in a long time probably dating back to the transplant. He's happy today and is talking and saying da da. he ahs learned to pull down his blanket when we say peek a boo and he is grabbing things when you pull em away from him. He is talking like crazy as I write this.
The doctor came in and said not much is changing we can give him food by mouth which im nervous about but he is hungry and they want me to what am i supposed to do although they may come in monday and say i shouldnt so its kind of know who wants you to do what and when. He asked what our situation was so i explained our routine and he asked about where the kids stay and such and he shook his head and said i dont know how you guys do it. i said i have to he says three kids in a hospital room i couldnt do one and i said well i have trouble but i aint gotta a choice so you get up and do it. He says we deserve a trophy or summtin ( i felt like saying i dont want a damn trophy i want my kid home, i didn't tho i was good) he says it is amazing we are still going he said you would think youd get to a point where you say i cant do it and crash i said we have those days but you go to bed and it doesnt go away. he told me i have the right to blow up if i do i would and isa id i dont know if i have the right but believe me i do. lol He says he cant believe how much older Tyler acts and looks in the last few weeks he said that is great and surprising to everyone.
Not much else is goin i think i might of pissed off my ma but i cant help it i actually was good this time but i always get blamed for everything. what are you gonna do? i dont have the strength to argue i just dont think my family or bobs for that matter really know how hard this is or how hard of time were having were two car payments behind it will get repoed next month that means no car which means no visits to tyler or work. i just think sometimes they dont believe all were going thru or that were not having the trouble we say? i dont know so i think they misunderstand my anger as at them when its really at the situation and that no one understands how hard it is. they talk about how hard it is for them so i always wonder well you odn thave the bills we do or the expenses and your having trouble dont ya think we are? im not wanting them to cure my problems just understand if your having them we probably are experiencing them ten times worse. my step dad made the comment well that all gets paid for you right? LMAO NO! why would it? lol or my mil saying oh medical card will pay it yes if we got it and it paid for everything were not jacci and get all those resources. it makes me laugh people think you dont have to pay for this. oh well i should guard what i have to say but then whats the point in this then? i guess im just mad and tired and overwhelmed by today and all three kids here.
I talked to a couple up here and they said why your kids here i said my ma is working overtime today she took a jolt in pay and needs to and she lives pretty far away. they said what about the other grandparents..... hmmmm.....lol i said i have three sets and only one has helped go figure. she says well all ours are passed away but my mom and she keeps my girls the whole time im here day and night well yeah cuz she dont work. probably older ya know. i felt like i was having to defend my life it just stunk. i cant ask my ma to just stop working she has a life yet there are two other grandparents and.. i thought it was advantage to have a disfunctional family that was divorced hasnt really worked for me though. lol
bob said this would work to yell at and i guess it has cuz normally i would take this out on someone but i guess in here its just voicing what ya feel without yelling which i have no strength for.
i had a nurse ask if i was sick i said no why she says you look so pale and your eyes are popping out of their sockets i said i dont know ive been pale must be my hg again better get back to get it tested. then i came in and was worried she thought id come and see him sick. its endless worrying. well hes sleeping and the boys are ansty so i have to leave *crying* i hate leaving him
- posted by Peg Kay @ 1.5.04