Sometimes I feel like this is never gonna end. Other days I wake up and am just thankful he hasn't been taken away. So much has happened since my last post...
In and out of the hospital continuesly, up and down on the steroids, up and down with emotions, fear of losing him, seeing him drown in pain, fight with the pa, have people you barely know dig into your personal life as if it is their business, isolation..the only trips out for me and Tyler are to the hospital for day long visits that usually consist of people nosing into everything that just happened to you in the last week. Are you under the same roof? does he sleep with you? do you give him this med? that med? what do you do to his feet? are you divorced, I actually had the PA put in our daily notes "mom has been quite depressed lately." HMMMM WONDER WHY??? couldn't be that the only trip i get is to see your face drilling me about how I take care of my kid all the while worrying if your care is gonna save my son... hmmm couldn't be that could it? Nah. Not only was it none of his business, as Tyler has a father and Tyler was being taken care of and lacked any sign that he hadn't been.
THEN I had a doctor tell me if I felt uncomfortable being in the hospital dont come. SHEA RIGHT!!! and let you have reign on my son. Not likely. They screw him up everytime we take him there.
As you can tell it is one of those days of feeling sorry for myself and wishing and feeling we should be through all of this already. At this point Dylan was off all meds and doing well and i remember distinctly the PA's words after diagnosis, "peg, it is different this time. shit yeah it is. it's worse!!! then he replies, well, peg this isn't an exact science. Perfect cop out line.
Tyler spent the last week ill. I watched a commercial and there is this baby laying in his crib while a lighted toy is putting him to sleep. I found it odd. Just a baby laying there, no tubes, IV's, o2 cords, blood pressure cuff. WOW what it would be like to put my child to bed without seeing steroid cheeks, or hear him breathing throughout the two story house, or be up all night listening to his machines beep annoyingly to tell you he needs oxygen only to fight with it at three in the morning because it isn't working and his sats are dropping into the 70's. our lighted toy? the pretty lights of his pulse, o2, and bp measuresments. then to get him up is a three hour ordeal. AND WHEN i start dumping like i am now i try to tell myself he is still here and we have alot of positives that most patients dont. There can be a cure to this, most patients being treated up there. and the pa i complain bout, well, he listens to me even if i am full of crap he still listens to it. he knows ty up and down, left and right. we could have a pa who doesnt care. i wish he was a little more human at times, but he is damn good at his job and i credit him in keeping us informed and keeping my kid as well as he can be. but he still drives me crazy sometimes. lol
they said it could take another year of this. sometimes i dont know if i can do it i get up and the energy has just drained out of me, but then he looks at me says my name and it just pulls me up.
although i still have trouble seeing kids his age. he is almost 15 months and he still looks like he is six months. i see kids his age walking and i wish he could feel good enough to do that. sometimes it gets so bad i just envy people with healthy kids who havent missed out on their babies first few years, my sis is having a baby im pretty convinced it is a boy and as much as i want to be happy for her and of course i am and would never wish ill will or this on anyone especially her i find myself not wanting to hear about it or worrying when he comes i wont be able to bring myself see a child live the life i want tyler to so desperately have and the worst part is the guilt i feel for feeling this way.
I changed his dressing the other day and I see this c line coming out of him and it just made me sad that we haven't seen him bare chested since he was a month old. he has never had a bath, he has never been outside with the exception of being rushed to the car, he has never been on a bare floor or slept in his own crib at home.
im at a frustrated point. we should be closer now to him being healthy. right now we are at .04 on steroids. likely we will be going up again. he has less of an immune system than he did when he was born. He is so supressed. Still on night iv, cvn nutrition. I try to tell the docs, now that he has had normal food and knows what it taste like WHY IN THE HELL would he drink that nasty isomil. I know he wont drink more formula. He will not drink more than he is now. They want to do a g tube which would require surgery and yet abother infection risk. It has been discussed and nixed by both Bob and I. I have to get in his line to flush him I might as well do the cvn rather than worsen his breathing with an ng tube or put him under more stress with a g tube insertion. it is something i just wont budge on. We have talked about synages vaccine monthly to reduce risk of RSV but it seems there are alot of different opinions on this and I waver with this decision daily. I think something different everyday. Our pa says to do it and when all else fails I listen to him BUT he is also procedure and med happy. Or professinally speaking, he thinks of all spectrums and would rather be safe than sorry. but easy for him because it isn't his daughter who will be getting two shots in the legs at once every month nor will he be in there when ty does or nor will he care if ty is hurting or not. why should he? not his kid. he thinks im difficult, but it is more simple than that, i dont want my kid to hurt. if the procedure is gonna hurt him i'm gonna fight bout it because sometimes in that hospital they make it sound like it NEEDS to be done but the next day the doc says hmmm i dont think it needed to be done.
I remember they wanted to do an endoscopy on ty i refused but the pa talked me into it i said if we can be in there ok. i go in there and the doc he said would be doing it stood there while two of his bumbling idiot students bumped into each other WHILE the scope was in my child!!!!!!! its a teaching hospital yeah yeah teach your students how to walk!
Everyone wants me to do a book about this including my late editor. lol i think i would be sued for slander if i did. lol
I have so much anger i know i am not making sense in this entry but not many people will see it. so i feel safe. and of course anyone who has gone through this knows there are days where you are so close to the edge that one wrong step and you would fall off.
bob and i are, um huh, were trying to work on things, now... the stress of this is just too hard on a marriage and it is hard to fix when the situation is still there and you have no time or energy to try and fix or help things. i love the man, always will, and i THINK he loves me, but sometimes it just isn't enough.
we have stopped phototherapy, bob goes back to full time assistant manager and has been offered a managers job in the quad citites.
Some of ty's fluid is coming off and he has the biggest most beautiful eyes i have ever seen. he looks up at you with a smile and those eyes... I have said since the day he was born, his eyes... they are just full of life, it's like his heart is in his eyes.
as i sit here and whine and go off, all the while he sits with a smile looking at me like i'm superwoman, his strength and i look down at him as my strength because through all of the tired days of meds, ivs, machines, puking, stooling, putting up with nosy docs, isolation, marriage falling apart, bills piling up, with less and less money coming in each minute, through the fear he will leave us with only his memory, through all of this i look down at him smiling and that is my strength, because i know that all of this is worth seeing that smile, that look of you are my mom and i feel like you make everything better, it's worth all of this. And each day i find myself where i am right now, i have to remember that when he is three and walking through our yard bare footed, i will look back on this time as a triumph.
If Tyler can smile through all of this, as his body aches each day, as I shove meds in him left and right, as he tries to crawl only to be held back by sore steroid muscles, and six pounds of fluid, as he longs to be outside like his brothers or to spike a fever and not have to stay in a hospital. As he smiles... through all of this pain.... If he can be strong and smile, so can we.

- posted by Peg Kay @ 31.12.04