Liams Update

We've been at childrens hospital for 11 days now and will be there for awhile longer. Sorry for no updates the hospital internet service will not allow me to access blogger for some reason. For all his current updates please visit his web page http://www.wix.com/cherubliam/cdhfund

Day 8 UCSF Trip 2

Liam only gained 20 grams over night but if he has weight gain at tomarrows weigh then they're going to discharge him. Today was also the first day that they actually used the term "failure to thrive" on Liam. It was a very sad moment for me. I had been killing myself to get him to feed what he was supposed to feed and it wasn't working. I pray the NGtube will change that. He's already a different baby today. He spent probably 95-98% of the day awake, happy, smiling and playing. At home he was sleeping 95% of the day and didnt have the energy to do anything. It's deffinately a step in the right direction. We're doing continuos feeds from 8pm to 4am. We started them last night. He did really well, no throwing up, no upset stomach. It's been great. He even flirted with he nurses today and was able to withstand alot of being played with. It's the start of a new for him and us. Here's praying for our discharge tomarrow, getting our family back together and Liam's progress.

Day 7 UCSF Trip 2

They decided no surgery even though his right side diaphragm is floppy and barely working enough for Liam to breathe. I'm upset that they said they wanted to wait until his respitory issues get worse. My view is to fix it while he's healthy and strong, not wait until he's weak. Liam is still throwing up so we had to come up with another feeding plan. Feeding him through the tube using gravity isnt doing the job. The new plan is to continue using gravity during the day but a night time we're doing continuos feeds, 75ml over a three hour span and it leads into the next feed. We're going to do this for 8 hours straight then no feeds for atleast an hour then start the bottle again. I really pray it works. Barb with Pedi Surg was also able to get his prescription filled for Ranitidine. It turned out to be something simple. The morons at the Rite Aide in our small town just had to look at his insurance to see who it was through to realize they didn't need a TAR to fill it. If it's not one thing it's another. I'm glad that's one hurdle I won't have to deal with when I get home. Now we're just waiting for Liam to put on weight everyday for a few days before we can go home. God willing we will be home friday.

Day 6 UCSF Trip 2

Apparently the real problem isn't that Liam's diaphragm is high on the right side. The realy problem come to find out is that the right side is loose and floppy. It's moving enough to make the lungs expand but not enough to be normal. They're just going to leave it the way it is unless he starts having respitory issues. Hopefully he won't start having those problems. Yesterday morning Liam started throwing up a yellow green. We thought maybe the NGtube was in the wrong spot causing it but the x-ray showed its where it's supposed to be. We decided to start the Reglan again and see if that helps. He's being monitored to see if the tremors start up again. We're all hoping they don't, but theres no better place for him to be while we try this. I'm so irritated with people telling me how to take care of my CDH baby or what to expect by those who haven't had experience with one. I've had to tell the nurses how to handle him and what to expect. I have to remind the nurses every night that he is not to be taken out of him room because they love to grab up babies and walk around the hallways with them to show them off. We've been so careful with him at home not letting anyone around that has even been exposed to anything that I'll be damned if I let him get sick at the hospital. The quality care of the 6th floor is just not there. They drop the ball on everything. If I hadn't been there not only would my kid not get his meds or his feedings on time, he'd cry until he passed out and sit in a dirty diaper all day. According to Dr Minioti, when Liam can gain weight for two days without losing then we can go home. Meanwhile we have yet to have the people with the pump come up to show us how to use it so we can take it home just in case or hear that everything has been arranged for home delivery on his NGtube supplies.

Day 5 UCSF Trip 2

It's not starting out to be a good morning. I walk in at 7:14 this morning to find out Liam threw up yellow-green stuff. At 7:30 whle I was holding him he threw up yellow-green again. It's not a good sign when CDH babies do this. It could mean re-herniation or a bowl obstruction. It's one of the things they told us to watch for and take him immediately to the ER for x-rays when we got discharged the first time. On top of this, I had another really crappy night. I couldn't hardly sleep and when I did it was bad dreams that something bad was happening to Liam. Ofcourse we sometimes think the worst in situations like this. It's just what stress does to you. Now I'm sitting here waiting for the doctors and surgeons to come talk to me and let me know what todays plan is. I am already ready for today to be over. I wish I could just curl up with my son and cuddle. I hate seeing him go through this. What's truely amazing is that through out all of this and even a few minutes after he threw up, he's smiling and playing. It's just an absolute miracle. Liam is such a strong little guy. I'm not sure if I could smile and laugh if all this was happening to me.

Day 4 UCSF Trip 2

We started out the morning switching not only rooms but floors. We got put into a room with an 8year old who him and his dad were sick. They had that deep wet cough that you know means their sick. Justin asked them if they were taking any medicine and the dad said no. Finnaly after the started coughing every two minutes Justin went and talked to the nurses and had us moved away from them. We just can't take the chance at him getting sick. We've been so careful to not let strangers near him or anyone even family who are even sneezing near him. We have family that has yet to see him because we have to limit the number of people that come in contact to him. I was very upset that they didn't take that into consideration when they placed us in that room. On top of the coughing the little boy was complaining of a stomach ache. Those are all signs of being sick. Within 15 minutes of Justin talking to the nurses we were moved. The surgeons came into to talk to us and they were worried that they had to rush Liam's test thinking we were in a hotel and only had a few days. We let them know we were in the Ronald McDonald House and to not rush him out no matter what. We want to make sure that when we get him home this time we get to stay and not have to be re-admitted for because they missed something. Later the teaching continued on how to place an NGtube. Ofcourse I got volunteered to go first since I'll be the one doing it at home. We practiced on our nurses hand first that way we wouldn't be as freaked out. It took me 4 times to get his NGtube placed because as soon as I got it in he would cough it up and it would come out through his mouth. Finnaly on the 4th try it stayed in place. Then we checked placement and secured it to his face. I made a heart out of the protectant material. I thought it would be neat to for the first one we put in to have a neat shape. Now that I've done a shape, Id like to do more. They look alot better than just a strip on his face. The day flew by with all the learning we were doing, but my head couldn't hit that pillow fast enough.