Tuesday, September 8, 2009

Who knew getting prevacid could be so hard?!

So....yesterday off and on and more so yesterday evening, and then even more so later in the night and then very much so around 11pm, I noticed Riley was refluxing. Which isn't good considering we are on a trial to see if he can hold down juice for 12 or more hours, because if he can he can move on to formula.

Yesterday morning, when the doctors rounded i asked about him being able to have prevacid since he was going to begin taking things by mouth. They said they didn't know how he would tolerate the juice, and if he vomited, he'd vomit up the prevacid. He wasn't refluxing severly at that time, so I conceded to wait until today (assuming he did well with his juice trial) to begin the prevacid.

As the day wore on, he began refluxing a little more then a little more, then a lot more, so that around 7pm I asked his nurse to contact the doctor and ask about the prevacid again, because he was begin to just reflux constantly. Not only that, but I know from our experience with reflux with him in the past, that he was gonna begin projectile vomiting if we didn't get it under control, and that meant he had NO chance of keeping that juice down. So she paged them and the resident on call returned the page and said "we discussed that this morning, it will be revisited tomorrow" and hung up. What?! Things have obviously changed since this morning.

By midnight, after he had vomited again, I insisted she page them back again and this time, I wanted to talk to him. So she did and when he called back I explained to him the constant refluxing, to to the point of the arched back screaming over it. He didn't want to hear it. So I asked him if it was dangerous for Riley to have the prevacid and he said he'd have to check with pharmacy. I told him I expected a call back within an hour. He did so, and it isn't dangerous for him to have prevacid with any of the other meds he's on. He still didn't want to do it because if he vomited it up, there would be no way of knowing how much he had absorbed and so we couldn't give him more until the next scheduled dose. My response? so what. IF he vomited it up, he would be NO worse off than he had been. The only thing it could do is help. So he agreed to call it in. It came up in a liquid form (at 3:30am! argh), that Riley wanted nothing to do with, and literally, as soon as I shot it down his throat, he launched it back at me and past me, projectile vomiting it about 2 feet away. But another IV medicine had been called in as well, and that seemed to really begin helping him.

During all this, Riley hasn't slept a wink. I finally get him cleaned up and settled and he starts to drift off (the IV med had been in his system a couple hours and apparently was helping), and the nurse assistant comes in (I of course had not slept a wink either, and it's now 4:30am) and loudly announces her prescence and says she is there to do vital signs. I ushered her right back out that door. I said "not right now you aren't". Because I knew it was going to wake him and after his evening, they could go a little longer without knowing what his blood pressure (which he has had NO issues with) was for the moment.

At 6am, surgery comes around (without an attending) and they want to still wait another day before doing Prevacid like Riley normally gets. I told them I strongly disagreed and they wanted to talk over me, and I said "you come back with one of the attendings, and we will discuss it then". 5 hours later, still no sign of them. I go out, tell Riley's nurse that I am about to give him his own prevacid, just for her knowledge. I go back in our room, split the tablet in half, pop it in his mouth and call it done.

When surgery does finally manage to saunter back our way, after noon, the NNP says " I thought we agreed to not do prevacid today" to which I promptly respond "no YOU said that was your preference and I DISAGREED, and you were supposed to come back with an attending". I don't think Riley should suffer for you all not being able to find time to come this way. Just like I told the resident last night when he told me "i don't feel comfortable prescribing a med to a baby I can't lay eyes on because I'm at home and was actually in bed asleep". Needless to say, this did not get a very warm response out of me. He's in bed asleep, meanwhile riley can't find comfort to sleep because this guy won't prescribe the med he needs. ARGH.

So the outcome, after all this, is this: Riley will be getting his prevacid his normal 2x a day now, in its regular form that he gets at home. He has been allowed to return to "sips and chips" which for him means, he can have about 1/2 ounce of juice every hour for a few hours. If that does well, we'll up the volume a little. If he can do well with this today/tonight, then we will go for formula tonight. He has to prove himself on formula for roughly a DAY and then he can go home. So in theory, home could be only a day away. But he's GOT to keep it down.

When he woke up this morning (about 10am), he was much more like his normal self. He played some with his new toy last night as I posted about, but he still was whimpering while doing so. This morning, he played in his crib for about 2 hours with his toys and with me and was cooing and "talking", clapping his hands, banging toys together, etc. I raised the head of his crib a little moreso that he's sitting up a little better, not straight up, but he can see over the bar now and can play a little easier I think. He's not able to sit upright on his own again yet. But he seems MUCH better today, so I am hopeful that is a positive sign that he's turned the corner in recovery.

His little feet have been freezing and when Michelle brought the tshirts to us the other day, she brought some socks, and some little booties that look like "the Very Hungry Caterpillar". Get the irony? So...I put them on them today. He has enjoyed them!



Jenny in Chapel Hill said...

You go girl! Get him what YOU KNOW he needs! Good work.

Jay said...

Hope the prevacid helps! poor Riley.

Anonymous said...

Momma knows best!

Anonymous said...

Lindsey, Reading this post makes my heart ache for Riley. Knowing he giggled at you just now makes me feel some better. High praises for you Lindsey in standing up for sweet baby Riley. Hugs, Pauline

Natalie and Abigail said...

Oh my gosh. I can't believe you had to deal with that. So, he was vomiting because he was refluxing, but we don't want to give him meds because he might vomit, but without the meds he will continue to vomit. What kind of logic is that?????

And, honestly, that doctor is so lucky you didn't slap him when he said you woke him up. You didn't sleep, Riley didn't sleep, and the DOCTOR is whining.

I have heard this about PICU'S vs NICU'S. After being in the NICU, many parents are often very unhappy and disillusioned with the PICU.

Continue to stand up for Riley. Sometimes Mommy knows best.

Anonymous said...

Love the booties! Hope the prevacid helps Riley keep his juice down, so he can move on to his formula, and then go home. Ah, life in a hospital, isn't it great?! (NOT) I had issues in the Rehab. hospital after Billy's knee replacement, so I know exactly where you are coming from. We joked that they drew straws to see who would be his nurse. Oh well, we know them better than those people do. You really have to stand up for what you know is best for Riley, you are with him 24-7!!

Hugs for the "Big Boy", with the sweet smile! Dale

Anonymous said...

Oh Lindsey, keep standing up for Riley which I know you will. :) I hope the prevacid will continue to help with the reflux. Give Riley a hug from us. Love, Debbie and Gary

michelle said...

I'm glad he likes the Hungry Caterpillar booties, but I wish the doctors would just let Riley's belly get big and fat by eating what he wants, too! I am just waiting for the post that says you knocked the doctor out!!! Keep smiling and laughing, Riley. Your Mommy will bust you out of there soon!

Michelle, Scott, Jason, and Braden

Anonymous said...

Mama's know their children best. Too bad some doctor's don't agree with that.

Cindy said...

Good for you Lindsey...so sorry it came to that tho...moms know best! Come on Riley, lets keep that juice down!

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