11:30am The doctor came in this morning and we talked to him about Liam's meds and what happened last night with the nurse. He agreed that it was not at the nurses discretion and that he will be talking to her supervisor because that cannot go without consequence. We also talked to him about the fact that they were doubling the dose of Reglan. He said the GI doctor suggested doing so in hopes that it would help move things along. I explaned how I had been under the impression that Liams Reglan was already maxed out. He said it wasn't that this dose of .08mls is the max. We explained how we thought we DCed everything and were confussed at to why all of a sudden that wasn't the case. No one has been talking to us, explaining the plan or anything. We're sitting here in the dark. That was the problem we are having with them and why we feel they're not doing everything they could be. So now we have a sort of plan. Were giving Liam his meds and going to start to slowly feed him. Last night he only got a dose of Ranitidine and it instantly hurt his stomach. This morning he got Ranitidine, Iron and Vit D and it took about 5 min for it to start hurting. Thats a good sign that things are getting better but also that the problem is not his stomach but intestines.We're praying everything goes fine on monday with his upper GI and maybe get some answers. These nurses and doctors act like we have no clue whats going on and that we're just two dumb parents. They forget that we've been doing this since his birth and we were trained very well by UCSF on our sons condition. Childrens Hospital does not like to actually fill you in on the plan with your child. They're used to the kind of parents that just hand over their kids, say fix them and don't care how or whatt the problem was. so they're taken back by our need to know approach.
1:52pm The pediatric doctor came in and talked to us about his plan for Liam. It's the same as everyone elses but he actually was willing to talk to us about everything. We are starting feeds with 1oz of pedialyte every 2 hours for today and if we feel comfortable that he's doing good with that we can advance him to 1oz formula every 2 hours. He also DCed the Iron because he said Iron drops are very heavy and hard on the gut and he thinks it will help Liam not to on them. I have been trying to get him off the Iron for a month now saying I thought it was too much on him . The doctor did check Liams hemogloban before making the decision so it was an educated decision. I am very happy with this doctor and how he is handleing the situation.
2:15pm Just gave Liam his first feeding of 1oz pedialyte. He didn't cry at all. I never thought that I would be so happy over the smallest things before Liam. Now we just wait to see if he can hold it down. Sending up a prayer that he does.
7:00pm Liam has had 3 feedings now of 1oz pedialyte. He's held now every bit of it and hasn't been too fussy. We're thinking of trying 1oz of formula next to see how that goes. This is all so nerve racking and stressful. Memories of what I've seen Liam go through threaten to flood my mind and overwhealm me. Everytime I close my eyes I cant help but see images of Liam in ICN flash through my mind.It's the same concept as when a war vetran comes home, post tramatic stress syndrom. I know some people think it couldn't be that bad but you don't know how bad it is unless you go through it yourself. The sounds of monitors beeping might as well be granades going off. My heart starts beating really fast and I start sweating and the images start spilling out of the dark closet I tried to lock them away in. I guess the best way to deal with this issue would be to face it head on. Talk about it and hopefully learn to accept. I hate hospitals. I hate the smell, the lights, the beeping monitors. I hate that I feel trapped when I'm at a hospital. Thats probably all I can handle for now. They say you have to take it in baby steps. I know other parents that are going through this very thing after having a child in the hospital and someone needs to make a group for parents with PTSD after having a hospitalized child.
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