"Family Outting"

Today we had a "family outting". We took Liam to Children's hospital for Pulmonology Clinic, Surgery Clinic and to donate the teethers S4L collected in the "Teethers for Teethies Drive".   Our Pulmonologist listened to Liam's lungs after we told him what had been going on the past few days. Liam vommiting, possible aspiration, cough, stuffy nose, extra breathing treatments and even oxygen yesterday. He concured that he feared Liam had aspirated. There was some fluid on his lungs. He prescribed an antibiotic and oral steriods to try and prevent Pneumonia from setting in. He also prescribed Duirel to help get the fluid off his lungs. He said that because Liam has Chronic Lung Disease that he should ALWAYS be taking something like Duirel. He feels that it will also help him get through these winter months alittle "healthier". Atleast thats the hope. He knows Liam could get worse at the drop of a hat so couldn't guarantee that giving these meds at home would prevent Pnuemonia but its our hope and prayer that it works. We are also to give oxygen and additional breathing treatments as needed. If he gets bad, cant stop throwing up or increase in commiting, or larthargic, we are to take him to ER.   Please say a prayer that these meds work and that Liam does NOT get worse.   During our surgery clinic appointment, we discussed ALOT.   1) Because Liam is sick, our surgeon would like to see him back in 4 weeks to re-evaluate him. She would like him to get over this bug and have some time to be healthy. That way we know if his Hiatal Hernia is effecting him.   2)She agrees that Liam needs some kind of line put in weather its a broviac or mediport. Ofcourse Liam had a broviac when he was in the NICU at UCSF. I dont feel comfortable with a broviac and explained that to her. I prefer the mediport. She said if for some reason Liam HAS to go to ER and he needs a line then there is always a surgeon on call that can put a line in. She also said that most likely it will be a mediport. She said she didnt want to put him through surgery unless he absolutely needed it and that she would wait to do a line untill he needed it, unless she was going in to repair the hiatal hernia.   3)We dicussed Liam's right diaphragm. How every doctor and specialist feels that his feeding issues and lung issues are related. She agreed with our GI that they should run a test  to check the blood flow and oxygen in his lungs. I asked what the odds of him needing the repair where. She said most CDHers dont need it and on the ones that she has preformed it only helped for a short period of time. She said rarely does it fix it long term. She said that what she would do was called a diaphragmatic dupilication, meaning that instead of moving the diaphragm lower in the abdominal wall, she would put stitches in the diapgragm to tighten it up. It would actually allow the lung to be able to expand. Because he grows and his diaphragm grows with him that as he gets bigger the stitches could need to be redone.   4) She said that if she had to go in to do one thing, say the hernia or mediport, she would just do it all. She would check with pulmonology and do the nessesary test to find out how it was working and if they agreed then repair everything at one point to avoint re-opening him.   5) We discussed Liam's scar tissue. Its a BIG reason why she doesnt want to preform surgery on him unless she HAS too. She said that when she was in there a year ago he had ALOT of scar tissue and shes afraid that it will prevent him from healing properly. She also mentioned that his splean is actualy plastered to his left diaphragm. The scar tissue from CDH repair has actually attached itself to the splean and locked it in place to the diaphragm. She said that she would also try to detach the splean if she could but she didnt think it was causing the splean from working properly. She said shes seen this ALOT in CDH kids.   6)Our surgeon also let me know that if she had to go in to repair the Nissen/ Hiatal Hernia that she would try to do it laprascopically but she wasnt sure if she would be able to this time. She thinks she will actually have to open him up. Same goes for the diaphragm repair. She said she had two ways to go into him laprascopically to repair it, the abdomen and the chest but she doesnt want to go in through the chest no matter what because of his lungs.   Now were waiting to see what next month brings. We're praying Liam doesnt get any sicker, and doesnt have to go in to ER. As far as the surgeries go, we're just praying for the best possible outcome...a healthy, healing, happy little boy. We dont care about the scars, theyre a testiment to strength and God's healing hand.   Shooting For Liam News: Today we delivered the donation of teethers to Childrens hospital in Madera. They were very happy and thankful for the donation and taking them right up to NICU. We are very pleased to have been able to collect 23 teethers to donate. Today we helped 23 babies and feel very honored and blessed to have been able to do so. We want to thank everyone who donated teethers to the drive and who helped spread the word. You guys are an awesome group of people and God has really blessed us to have such awesome people in our lives weather following Liam personally, prayiing for him, or just helping S4L. You guys are amazing!