We're here for you...

Life with a CDHer is hard and trying. It's a journey not everyone is cut out to make. Expect the unexpected and the impossible. Liam's life has been full of unexpected's and impossibilities. For instance Liam was discharged after pneumonia and a hiatal hernia landed him in the hospital for 12 days just to return 5 days later with a complete different laundry list of symptoms. Its not the first time this has happened. This will be Liam's 12th hospitalization in his 14 months of life. Some CDHers go home from NICU and hardly ever see a hospital other than checkups and others have frequent visitor "rewards" making the hospital their home away from home. You can't determine how well your CDHer is going to do based on their defect. Liam's CDH was small and they were able to close up the hernia with his own diaphragm tissue requiring no patch. His stay in NICU was also short for a CDHer, only 48 days. I know tbe irony of saying only, because to me it felt like forever. Now since his discharge he has been in and out of the hospital with only 6 weeks straight at home. Your journey with your CDHer will be unique, frustrating, even uplifting. You learn to stay strong and positive even in the midst of darkness and sorrow. Remember that tears dont make you weak, they are an outlet to our over bearing emotions. Shooting For Liam is dedicated to helping families affected by CDH so if you need a place to vent our a shoulder to cry on, we're here for you. If you have questions but want to remain anonymous you can message or email us shootingforliam@yahoo.com

Stay 11 Day 11

Liam is on day 11 of his 11th hospital stay since he was born almost 14 months ago. He was admitted for pneumonia due to aspiration. While here at Children's they found he has a hiatal hernia and are saying they think its related to his CDH. Weve done lots of test. Today hes having a ph probe and this test will determine weather or not he has surgery or gets to go home. Praying for the best.

At it again...

As you know last friday Liam pulled out his GJtube and our Grandpa Beames passed away. Well things have been hectic since then. I spent 3days and 3nights working on a memorial video, we went to the viewing, funeral, and memorial. Liam was fine until thursday night at midnight. He suddenly stopped tollerating feeds and meds. He vommited several times and at 3:30a on friday he asperated. I called and got him back on the rooster to have his GJtube replaced later that day. When Grandma and I got Liam there it was confirmed that Liam asperated and was already suffering the effects. Our GI saw no choice but to continue with the surgery even though he thought chances of Liam tollerating excibation was slim. I understood the risks and agreed fearing there was no other choice. The plan had been to keep Liam overnight for observation. After surgery, our GI came to talk to us in the waiting room. He said everything went great and the excibated him no problem so they decided just to watch him in recouvery for a few hours to watch for fever. The fear was that Liam asperating would turn to pneumonia. If he was fine then we could take him home. The nurse in recouvery didnt understand his orders and released Liam after barely 30min even though I protested. After our hour drive home I take him immediatley to his room and check for a fever. He had spikesld to 102.2 and was in respitory distress. I called our ped and explained the situation. He tokd me to give 4mls of tylanol and 4mls of motron and would call me right back. Half hour later when he called back Liams temp was 101.6, his breathes per minutes 63 and he had started desatting. Our ped told us our GI was furious that his orders werent followed. I was instructed to call 911 and take an ambulance to Kaweah Delta where they would stabalize him and the transfer to childrens. We reached Kaweah at 7:30ish añd then the transfering ambulance picked us up at 11p and we arrived at Children's shortly after midnight. This is where we have been since. Liam has pnuemonia due to asperation. Since weve beeb here he has vommited and asperated twice, making his condition worse. He's on his third IV which is on its last leg. Today they did an upper GI and learned Liams Nissen is above his diaphragm and very thin, not the way it should be. They also learned he now has a sliding Hiatal Hernia. This is why he is vommiting. The opening is bigger than it should be because of the hernia. Feeds have been put on hold as well as any meds he doesnt absolutely need. Other doctors ae being consulted as we speak. The outcome will be the same, liam needs surgery to fix this. The question is when? Do they wait until his lungs are better and keep him on IV fluids only until then? That could be days and no feeds is only going to cause more respitory issues because it takes Liam alot of callories to breathe. But in going ahead with the surgery they risk not being able to excubate him and having to send hin to ICU until his lungs can fly again on their own. Where does that leave me? Honestly I dont care about me. I have the yukon here now so I can make a bed in the back and camp out. Im outdoors kinda girl anyway. Im asking that you say a prayer for little Lamb, that he stay strong and that God guides the doctors hands. Liams doing his best to smile his way through this and to win the nurses hearts. If you would like to send him an ecard or message you can send it to cherubliam@yahoo.com As always Liam loves hearing from those who are praying for him. Sent from Yahoo! Mail on Android