Today I came home to get the mail and drop off homework etc. On the way home we were trying to get Bob to work on time and we get a speeding ticket alright we were mad get to middletown we get another damn ticket. He says why were you going so fast we say well we are driving from IC cuz our son is up there and we are trying to get to work on time so being the nice guy he is he gives us another damn ticket. It's our fault for speeding but still. Oh well small on the scale of things but big in the sense I have NO money and have no idea how I will pay for these or to mention Bob will probably get fired for being late.
My mom can't watch the boys this weekend she offered for alternatives but I cant get into that now but it will all come out later but right now I look like the bad ass or the snotty one oh well my kids are the most important. So now I have to figure out a way to keep two kids entertained in a hospital room with a baby who needs almost constant care nevermind it rained today so they didn't get to burn off steam it will be pure hell this weekend. what am i going to do though? I just feel like no one gives a crap about what we are actually going through. You tell them oh he has this they are like oh darn gotta go and I dont think people realize how expensive it is to live like we do or to have the bills we have. Oh you have insurance yes we do but you know what IT DONT PAY FOR EVERYTHING. we got an answering machine message saying we owe 950.00 for meds we THOUGHT we were going to need when he got realeased who has that in their wallet? not many people but if we want to bring our kid home we have to come up with it. Not to mention living in two different places, parking fees, food during the day, groceries for meals at night plus when Bob comes back home or the postage to send homework to Dylan's school. I get so mad. I hear people say oh she/he is going thru a rough time with money oh well I would love to have your problem wait I DO plus I'm worrying if my kid is going to live and how I will deal with shoving tubes in him or hooking him up to iv's.
Now granted I know people have it worse than me but I've had to listen to three people today say how horrible their life is or someones life is and I would love to have their problems and some of them I do on top of everything.
I'm trying to be strong but I'm having alot of trouble. I have no money to eat out so tonight I pick Bob up at 8 we travel to Iowa City where I get to make beans and weanies and if we are lucky and have mac and cheese and then manage to do laundry and clean up supper at 11 o clock at night. Then get up and walk to the mac house with two kids probably in the rain and get thru tomorrow only to face it again on Sunday.
I complain about this but if it were between this and Tyler not being here I would obvisouly pick going thru this so I can have him. I guess what has gotten me down is the tickets, not looking forward to this weekend and we got Iowa City bills and a collection bill from when Tyler was born. 600 is what we are down to from him being born but Iowa City we're still getting bills from when we were at visits before he was admitted after insurance and our secondary insurance we still owe 4000 for each visit. that is what we are responsible for and that is without lab test. he had 12 visits before he was admitted on dec 10. It is freakin nuts what you get charged. Our secondary insurance say we've hit our limit. so from here on out whatever our main blue cross dont cover well its our lovely bill. It is worth it I mean ill take the bills over the alternative anyday. Tyler is all I want but it is still overwhelming and I just dont know how we will pay for it.
I'm missing him, I havent got to see him all day. When i'm not with him there is just this huge hole in my heart. I think of him in that damn crib all alone and it rips my heart out I cry now just thinking about it. I get so mad at life and to whatever is to blame for all the wrong in this world. I shouldn't have to leave my son at night or not see him because I have his brothers with me If i want to check on him i should be able to walk to his crib do the old mother test of putting my finger over his nose to make sure he is breathing as every other mother does not call up a nurse I dont know and ask how is he doing any blood in his stools? fevers? hows he sleeping? I seen a friend had a baby boy earlier this month and I just looked at the pic of him and wished so hard Tyler could be healthy that Bob and I and the boys could of been home and feeling what its like to have a baby at home, walk thru the stores looking at baby toys and hearing people coo over him. I think about those parents getting to feed him and get up with him at night and dress him without worrying bout a cline or iv lines I think about them showing him to their older daughter and smiling when she kisses him before they put him to bed and it hurts so bad I cant have that and most of all Tyler can't. I wonder if those parents know how lucky they are.
people say stay strong you can do it and im ready to yell THEN YOU GO THRU IT. seriously id like to see how people woudl handle it if they were to go thru it probably not any different than we are maybe worse.
i tell ya i know how bad this can wear on someone. my cousin was diagnosed with leukemia and has been facing the same thing. My uncle Ronnie, since I was little I always seen him as the strong powerful man who could handle anything, always had this cackled and energetic greeting, i always seen him as indestructable he was just the picture of strength and having his shiSH together. He came to see us (which no hug had felt better in awhile) but you could just see the sadness in him he was just worn and the worry and months and year or so was just blaring on his face. His eyes looked tired and scared and that is how hard this situation is if it can do that to my Uncle Ronnie...... it's just not fair
I couldnt sleep last night I checked on him in the early morning hours the nurse was asking me what I was doing up and I said i just felt sick that i couldnt see him today. parents shouldnt have to go a day without seeing their kids. i know parents who ship their kids off every weekend how? why? i just miss him so much right now I wish he was home or at least in my arms. They say his skin is pretty broke down today and he was fussy so they gave him a pain med but he seemed happy she said the rest of the day. When I called last night the night nurse said you must be keeping him up during the day cuz hes been sleeping the whole night and I said us being up there ALL of us helps I think he loves us being there.
I dont know when (if things keep going this way) they plan on letting us go in my guesstimation once he is off his antibiotics there seems no reason to keep him there unless something comes up which it might so i hope to transition to the mac house soon.
I guess I better get packed up and showered. I hope hes doing well tomorrow. TyTy has such a beautiful smile all i need is to see it and i forget all the anger, bills, worries, cuz when I see that smile in my heart i know its worth it. its like dylly's hugs and brandos kisses it just makes ya feel better.
i'm pretty damn proud of this family we have had very limited help in all areas and weve managed to get this far even if it all falls apart here im proud of my family. i guess none of the above stuff really matters we've been thru hell and we will continue to but we are still stnading BARELY lol but we are i dont think many people i know could of said the same thing had they went thru it.
i got to find strength for this weekend for my family for Tyler. how i dont know but i have to.
- posted by Peg Kay @ 30.4.04

 
We went to take his c-line change off and found that his skin has been breaking down and pieces of his skin were torn off so we have to put him in a burn wrap and try to keep his exit site closed from air which it's not. his bottom has also started bleeding so we are going to try and get that handled he just cries when we change him and I'm so scared that we are going to pull on that line cues there is nothing holding it. im so scared he'll pull it out since we wont be here tomorrow.
He's in quite a bit of pain. i have to go its med time.
im so sick of watching him hurt:(

- posted by Peg Kay @ 29.4.04

 
today brought mass confusion. We went to do phototherapy and they had miscommunication and it brought one heck of a mess.
Bob and I had trouble getting out of bed. He was so mad at the doctors this morning. I'm starting to get so angry. We've had to bump him up to cvn at 21 hours which means we will not get out of here anytime soon. I'm so mad at the world and SCIDS and the docs. I want this all to end, but i want it to end with Tyler being healthy.
We brought Tyler's stroller up and he loves it and cries when we take him out. The nurse said he was fussy when we left last night he likes having all of us up here. it makes me sad to hear he is upset when we leave but it was getting to the point of exhaustion staying here. I want him home so bad. I kept telling him today it is so much better on the outside I promise so no funny stuff lets quit the temps and go home. Kick SCIDS in the ass and make it a memory.
momma
- posted by Peg Kay @ 29.4.04

 
Yesterday we got the bad news that Tyler has air space disease in his left lung. A very serious condition for an immune suppressed child bad for even a completely normal human. We think he got it by aspirating fluid into his lungs during one of his puking episodes. What this means for us no one really knows. It looked a little smaller on yesterdays xray but it can always get worse so this would explain some of his fevers and coughing and endless snot burgers.
He is on a ten day course of antibiotics and hope that will calm all that is going on.
Monday the doctor messed up and wrote the order for two hours which then of course the nurse gave his blood transfusion over two hours and all our hard work with phototherapy went down the drain because he is all red and burnt looking again.
I mentioned the mistake to the doctors and of course they said we will write a note well you did that before and didnt stop it. They've messed this up five times now and Tyler suffers for it.
Bob and I noticed he seemed to have trouble sitting up cuz of his puffiness so i mentioned more lasix the doctors dismissed me but when Steve printed off our daily report in it he wrote parents mentioned he has trouble sitting due to puffiness and therefore an extra dose of lasix will be given with his white cell transfusion tonight. Obviously he listened and took it into account. THIS is why I like Steve he hears me and if he can change or agrees he will try and help and if he disagrees he will tell me why we can't take a certain route. He's golfing for two days so all hell usually breaks loose up here when he's gone.
It seems an actual piece of tissue was found Saturday (by me) and it turned out it was a piece of his intestine and not the lining so all feeds are stopped indefinitely. He is still hungry so we just feed him water when he needs to suck on a bottle. Tomorrow we will be on #8 of photo treatment the blood doctor (who looks like an older version of JC CHASez) those who know me see why I take such delight in talking to him .lol In any case he came up last night and said they would talk about our next course of action which I still think we will continue so we can get him off of steriods. He said even if we get discharged he will sit up a room in the clinic for us. He is a really nice guy. Always ask my opinion which I like that they at least act like they care what I think.
We just sent boys off to story time and managed to get Tyler bathed, suctioned, lubed, creamed and medicated, and his bed changed which takes upward of an hour or so to do.
Bob is having alot of trouble his grandpa died and his parents called about him being a pall bearer but he cant cuz it is on the one day he has to work so we can get a check. Bob has just reached a breaking point he's sick of doctors telling how to raise his son, living where we are, he says he's so sick of people asking how he is and when you tell them they are acting like it's a cold and say oh jeez and move on he says people just dont comprehend how serious this is or how broke we are. (we just got a huge hospital bill even after insurance. they want their money and we have zip in our account. bad checks are getting us by) He's just sick of everything and i feel bad but i feel the same way so how do we get over it we cant cuz this is our life for now and for a long time.
the only consolation I have is I'd rather be here than at a cemetary which so easily can be the case especially after news yesterday.
Anyway, we get IVIG today which means we probably will deal with a reaction which will sit us back even more. He seems pretty happy today though talking and smiling. it changes so fast tho depending on what we have to do. he has said his first words of course DADA. and he rolled over yesterday. iwill write the dates here because his baby book is at home, home in LY but i want to remember. first words apr 26 and rolled over apr 27 and he is teething so soon maybe a tooth will be added. I try to tell the docs that can add to his temp but they say teething dont cause temps and I said Ive had three kids and all of them carried temps even when D was on morphine but shhh we just let them think they are right so their egos are in tact.
I was pretty tired and upset yesterday and I took it out on a friend so I say sorry now and sorry to those I would not answer calls from. i didnt know how to react to the news. I'm so scared of losing him and the reality was even more real yesterday that we can and we might.
I told Bob we will think back at this as a memory when we see him graduate and we'll get thru this and he will be getting in trouble with the other two soon. Now how do I convince myself that it is true?

- posted by Peg Kay @ 28.4.04

 
Well, we got called by the nurse again last night. It was Gayle she is awesome letting us know when something is wrong. In any case they drew out over 40 cc's of liquid green stuff from his stomach and the doc says it basically looks like what is coming out in his stools. So they did a chest x ray of his stomach and abdomen basically showing his stomach is so larger it is pushing on his airways which has always been that way and everything else looked unchanged.
When I came in this morning he looked awful he was breathing so hard and fast he shook his whole crib..his pulse rate was near 200 last night but had fallen to a still very high 180 as i walked in. The docs came in around 10:30 and said they think the majoirty of his problem is his stomach. Even after being fed over 24 hourse ago there was still 2 ozs. of formula in his stomach meaning nothing is moving in there but we can't give him reglan due to he is already having loose stools and this could cause dehydration so we will not likely do reglan til we decided to try feeding him again which will be a very long time. Which brings me to the reason all of this is happening well,..... we thought infection nothing has shown up on the cultures so now we think it may be gvh so we have went from 1 mg per kilo to 2 mg per kilo on his steriods and because we dont think his meds are being absorbed we are going back to iv meds which is a huge step backwards in trying to break out of this hospital. this is as Dr. G says a very down moment. There are ups and downs and right now we are down. His skin is starting to get tough again so gvh is really flaring up. We may never get to take him home because these episodes come with no rhyme or reason that is visible at least. So to take him home is very unlikely he could have an episode anytime and we dont have the equipment to support that type of an episode. We are starting him on dilauded again tho I'm not real sure it is helping. We manage to take him off oxygen though we heard a squeek in his lungs. They also added gentomyacin which D was on too. it is to cover all basis as far as infection. While doing a dressing change today he had alot of crust around the site and it is very red and swollen but it dont look like infection as much as dry skin that has become moist and is ready to come off. He is very swollen on that side of his chest so we tried a different dressing change and hopes it will ease the pain he is feeling from it. Our nurse Ruth managed to get the doctors to put him on lasix to remove all the extra fluid he was pretty puffy this morning but it is a hard call because he is supposed to be growing so what is fluid and what is actual weight gain? no one can know for sure so we try to balance it and hope he doesn't overload or dehydrate but Ruth and I noticed that after the lasix was given he was much more alert and seemed to feel better enough to open his eyes. Bob taught him to blow kisses so he smacks his lips and he woke up smacked his lips at me and went to sleep. His skin still looks good i took baby oil to his head and wiped away all the dead skin it is nice to feel his soft head again. I haven't got to hold him for more than a minute in the last week so I snuck a snuggle away from oxygen this morning it felt so good to feel him. he is so uncomfortable being held so I laid him down. Since he cannot have food or drink I take his nystatin toothettes and wipe his mouth with them to moisten it he actually grabbed it today so i let him do his own mouthcare for six months he does pretty good. So where does this leave us? In the hospital for a long time.
I told the nurse this morning (who told me that yesterday she could tell my smiles were fake and it was getting to me. she says i tried but didnt do well hiding my pain) I was walking over here and was so defeated and so tired and I almost wanted to turn back and just go home to the point I stopped and had to make myself walk toward the hospital, But after I got done lubing up Ty suctioning him out, changing his diaper, doing his dressing change, he smiled and cooed at me and It made me remember why we are doing this so it gave me that one little push to try and keep going not to say I wont feel weak tomorrow or even tonight but I keep thinking he can smile thru this how can we not? I told Bob we have to do what we have to do to get thru if it means staying at the mac house instead of the hospital, having meals together, driving to work from Iowa City we have to do it. I said do we look back on the six months with Dylan and say god wish we wouldnt of done that for him? no we say it sucked but we did it and we dont regret it because hes with us and we will too with TyTy it's just harder to keep believing it while you are going thru it.
The thing that is hard to see is his pain. even sleeping all his vitals stink and are too high and he breathes so fast.
The boys both went back to their Nammy's today and I'm glad they did cuz i dont only want them to not see him like this it's made it easier to concentrate on him. tho im quite hungry i left my food at home and if they would of come up i would of grabbed it cuz i would of grabbed theirs as a priority. lol
I miss the boys I feel so empty when we are not all together. I had a woman tell me I'd love to be away from my kids that long and i said i must be weird i like being around my kids tho i need a break sometimes more than a day is too much for me.

I guess that is it for now but with his condition things change so much. we've switched phototherapy to tuesdays and thursdays which makes it hard with thursday being our transition day. We'll deal I guess it is his last round before reavaluating how much more and longer we will do it i think or predict twice a week for another 4 weeks and then look again at where we are. We'll see. as for now that is the latest. I just hope we can get him over whatever is making him so ill. I dream of the day we can have him in our own home.
me

- posted by Peg Kay @ 25.4.04

 
Tyler has taken a turn for the worse again. I got called at the mac house in the middle of the night his respers and heartrate were up and he spiked a temp. we have stopped all feeds because his stomach lining came out in the form of bloody clumps again. we thought it could be withdrawl from dilaudid but turns out he has an open sore on his bottom and everything in his stool then gets into his blood so it could be a bacteria infection. we have treated him for sepsis and so far no blood or stool cultures show anything and it looks like his andovirus may be negative so far. his liver enzynes and billirubin are starting to improve that is good as it was a strong worry gvhd had attacked which is terrible to say the least.
we will keep the tubes in in case we need to treat for c-difficil if it shows up on the culture. Brandon is with me today and he is being very good.
It looks like we will be in here for awhile and it dont look like anything is easing up.
well my plate was full so i went back to town to dump it and was successful. all extra stuff has been eliminated. now only my kids and husband are my concern. im just not superwoman and as much as i want to be im not. i get mad, tired, sad, depressed, im not handlilng this good and i cant always wear a smile. so from now on if im sad im going to say it and you know what no fake smiles from me.
When i went back i caught up with some friends. i think im a curse. i have so many pent up feelings bout so much. i think im a curse cuz they were all so bad off when this started for many reasons i go back and everyones life has changed so dramatically almost to the point they are unrecognizable to me. i know people say they care and i know they do i dont doubt it but when all these good things are happening they dont think of me and my sadness and i dont blame them it taints their own good fortune so i understand and i want them to have all that stuff no doubt in that but while im going thru hell everyone is living life and 6 months have gone and ive not only missed out on six months of tyler being a baby but life in general. do they really care? or just want me to think so or to appear they do? do they think about the week they spent with their husbands or boyfriends i was without a babysitter. while they were cuddling or making love for the first time i had no babysitter or no one to talk to or i was wiping blood off my sons ass cuz he is losing his intestine. i would never want it not to be that way for them and i want them happy and i wouldnt want them caught up in my life but it is just a reminder im alone and life goes on.
i have no idea where we go from here we are on the verge of not being able to pay bills and have little money even to buy lunch for brando today. work wants bob back and his fmla runs out very soon and i dont know how i will manage three kids in IC by myself plus be here for TyTy while he works a 60 hour week. i walk to the hospital from the mac house now it is about a mile each way. its only real bad when its cold or i got a load to carry. boys like walking it though. someone will mow the yard for us but thats a 30 fee i cant really afford. im glad i wen t back to ly yesterday cuz the school sent d's pics and they were laying on the deck so if i wouldnt of went back the rain would of ruined them, must be a new mailman. i walked into my house and it is not inviting at all because all our stuff is at the mac house. yet it did me good to see it after so long. on top of everything we had to pull the boys out of school as to not infect Ty so im a teacher to the boys thru all of this and it is real hard to keep up with. we get back to the mac house arounnd 10 and that is when i do laundry fix supper and do bills or wash dishes the normal house stuff only in a smaller place. we get to bed around 1 or 2 only to wake up at 6 to go to work or hospital to start the day of catching puke putting meds down his tube and wiping blood off his butt not to mention the many interruptions from people you cant even go to the bathroom without worrying someone you dont even know may stumble in to see Ty's condition or if you need something or to get something not to mention waiting on edge everytime he gets a med to make sure he is not reacting to it and sending him into being tachycardic again.
he has officially been here longer than Dylan was after his transplant which is saying alot.
im just tired,lonely,scared, feeling helpless, i want to take it away from him why cant i why cant i touch him and make him better:(( he hurts so bad right now why? no one will answer that and i know they cant but....he doesnt know what home for us looks like....im so tired, tears just flow out of me and i dont even know im shedding them. i think im going crazy and that wont help him which makes me feel worse. i want some hope tell me he will live and ill keep going..someone tell me he will live a healthy life.....
sad in iowa city
- posted by Peg Kay @ 24.4.04