Pergatory

Id like to say things are going great but the truth is they aren't, that we really have no idea whats going on. We're still waiting for the blood cultures and viral panel. Yesterday we lost Liams IV. The doctor decided to start him on pedialyte instead of searching for another IV. She knows how hard a poke Liam is. Since starting the pedialyte Liam has retched a handfull of times. This morning he was acting like his stomach was hurting. His tube site has been bleeding from new granulation tussue. Yesterday Liams chunky leg got stuck in the crib railing. He was trying yo play with the IV pole and stuck his leg out past him knee and got stuck. Props to him for not crying or freaking out. When I couldnt get it out I got the nurse. When she couldnt get it out she ran out for help, asking for lotion. 10 people came running into the room. 8 of them doctors. With the aide of barrier cream we got Liams let unstuck. I didnt freak out because Liam gets stuck in the crib at home all the time. All we have to do is pry the bars just alittle and it comes right out. His crib at home is wood though and the one here is metal. I was starting to think theyd have to call the fire department to cut him out. An hour later after we cuddled and played, I returned him to his crib for him to try it two more times. After that the nurse tracked down a exersaucer for him. Per doctor orders he also went around butt naked for an hour and a half. He had a diaper rash and felt it needed to be aired out before we used anything. Ofcourse Liam was tired and I had to rock him to sleep, butt naked, praying he wouldn't pee or poop on me. It was trouble brewing Im telling you. After he fell asleep I put him in his crib, no diaper, and covered his tooshie with a blanket. I dont know about you, but in this day and age I feel awkward letting my son go around where everyone can see everything. I guess you can call me super catious. I want to keep my kids protected. When the doctor came in yesterday, she started worrying about me. Said I looked even more tired than I need when we were here last week. She asked if I was getting enough sleep, 8-12 hours she asked and atleast 4 hours straight. She didnt like hearing that Im lucky to get 4-6 hours a night with 2 hours straight max. She actually thought I was a single parent. I said I wasnt but I am the only one who takes care of his needs. So I guess when I get home I will have to enlist help, atleast until ai catch up on sleep or maybe just a few times a week. Im going to have to write a manual on how to take care of Liam. I have to laugh. Kids dont come with manuals. I guess Liam is going to be the first. Im praying that today his blood cultures and viral panel will be back. Its been hard this past 14 months. Ive watched Liam grow up in a hospital and have missed out on my daughter growing up. We are trying to raise money to buy 2 small notebook computers with webcams so that we can skype as a family. Liam needs his daddy and sister. I need to see my daughter. They need to be able to see us. Same with the rest of the family. My neice set up a fundraiser for us so hopefully one day we can make that happen. http://www.gofundme.com/17hb54 Sent from Yahoo! Mail on Android

I wish I may, I wish I might....

So many bad things seem to keep happening. Im sitting here in Liams hospital room thinking that if only I had my computer with me I could get alot of work done spreading CDH awareness. If only I didnt have to leave it with Justin. If only I had one of those tiny computers I could just put in my backpack. One with a webcam so I could skype with my family. If only the yukon wasnt broke down again. If only Liam would stop getting sick. If only theyd finnaly give Liam a mediport so he didnt have to be tortured for IV access every few days. If only I didnt have to watch my son grow up in a hospital surrounded by misery and pain. If only I could be there to watch my daughter grow up. If only my heart would stop breaking. Theres all these love and loss songs but where are the ones that depicts a family torn apart and a mothers breaking heart? I know Im strong because Im still here at Liams side. I cried while talking to my aunt today. The last time I cried talking to her was when I called her after Liam was born and flown to UCSF. I thought how come she is more like a mother to me than my own mother? How could she care more than my own mother? It made me resent my mother that much more. Theres a black spot where she used to be. When I needed her the most she wasnt there. When I was laying there in that hospital bed scared, hurting, broken hearted and lost she was nowhere. Unreachable. Untouchable. Shes been that way for years now and most of my life. Never there when I needed her. I really really needed her when Liam was born. I needed her today, for whatever reason my heart was broken more at the reminder she couldnt care less. If I had one chance to talk to her, I'd tell her I resent her for not being there and for walking away. That when I think of her I feel contempt. The only example she set was how not to be. When it all seems too much I remember think of her actions and it makes me more determined to be everything she wasnt. So I guess I can thank her for that, and only that. Star light Star bright I wish I may I wish I might Have the wish I wish tonight...... The strength to keep fighting when I feel weak and broken The will to carry on when things look bleak and weary The patients to endue the long lasting battle The faith to believe that there is a light at the end of the tunnel The ability to mend my broken heart Sent from Yahoo! Mail on Android

12 days in 5 days out and back again

Liam was discharged on tuesday after 12 days in the hospital. He had pneumonia, a hiatal hernia and we found out he refluxes over 60 times in a 24 hour period. A normal person refluxes 13-19 times and 45 is required high. Liams surgeon Jones decided the risk of surgery out weighed the benefits so Liams hiatal hernia was left untouched. After 12 days he was discharged and considered free of pneumonia. After only 5 days at home I had to bring Liam back to Childrens hospital ER. Liam isnt tollerating feeds and he has been running a fever since yesterday morning. This morning when I went to change the diaper I had used to vent Liams Gtube into, there was dark brown vommit. His xrays look good, no signs of pneumonia or bowel obstruction. His blood work so far only shows dehydration. Theyre going to do a viral panel on his as well. After 4 pokes, they were able to get an IV into Liams right temple. If it blows we're screwed. The nurses in ER were begging for a mediport just as much as I was and suggested I talk to his surgeon about it. Please keep pur family in your prayers. Lanie is having a hard time. Before I left I had got one of those record-a-story books for her called "Guess how much i miss you". I read the book recording my voice then at the end sang her night night song. My husband has told me she has been clinging to it life a lifesaver since I left. I also bought one for Liam and had sissy tell her own version on the story so that Liam can hear her whenever be wants. Life is hard having a CDHer. I am forced to watch my son grow up in a hospital and I am missing my daughter grow up. This is why Im dedicated to spreading awareness. http://www.facebook.com/ShootingForLiam Sent from Yahoo! Mail on Android