Saturday, February 20, 2010

Adventures in readmission.

Okay, picture it. Last Friday (February 12). About 6pm. Dylan's pediatrician calls and says that his total and direct bilirubin counts are high, and the direct one means something was going on with his liver. She told us to report to OU Children's at 9AM the next morning, where we would be directly admitted (and I STILL didn't pack to stay... I'm not very smart these days. I blame sleep deprivation.), and we would see a Dr. Sferra.

Saturday, 9AM: We made it just in time to the Children's ER to be admitted... and guess what? They didn't have a CLUE who we were or why we were there! I had heard Dylan's doctor on the phone asking the people where we needed to go and what time we needed to be there, so I know she was talking to SOMEONE at Children's, but nobody knew what the heck was going on. So we got to sit in the ER waiting room from 9AM til nearly 1PM. They did, at least, move us to a private waiting room so Dylan wouldn't catch any of the junk they've been getting in the ER lately (RSV is majorly rampant right now, those of you with little ones!!).

12:45ish PM: We were finally admitted to the hospital and moved to the 9th floor (pediatric unit). And by "moved," I, of course, mean the admitting lady said "Do you know where the 9th floor is? Great, here's your room number." and sent us up there by ourselves with our chart. So we get in the room, put down the bags we DID have (my travel pump, Dylan's diaper bag, etc), and I walked back to the door to find someone to hand the chart to. I was obviously lost feeling... and plus, you make big M wait ANY amount of time AT ALL and he'll be pissed, so I was already feeling that need to be the mediator between him and whoever.... several nurses walked right by me, saw I was obviously confused, and walked right past me. Didn't offer to help me... didn't say "oh your nurse will be with you in a minute." Nothing. Just stared at me and kept walking or doing whatever they were doing. I knew immediately that this was not going to be an experience like in the NICU, where we only ran in to MAYBE 3 people we didn't like in the entire month.

1:30ish- Dylan's nurse finally finds out we were there and comes in. She apologizes profusely for us being stuck in the ER waiting room forever AND for not knowing we were there sooner in our room. She was a really nice girl and really good with Dylan, so I started feeling a little better.

From about 1:30ish til pretty much FOREVERRRRRRR it felt like, all we did was sit there. They took Dylan for some blood work (she didn't realize that I've seen Dylan poked a billion times, and even though it's sad every time, I'm pretty tough about it.) And we just waited. I asked the nurse to make a sign for the door for people to knock when they entered because I would be pumping/breastfeeding, and I didn't particularly want people walking in and seeing that. She did.

FINALLY (I can't remember exactly what time): Resident doctors start showing up. They all ask the EXACT same questions as the one before. They don't have any answers off the top of their heads. Dr. Sferra is apparently at HOME, which prompted us to ask why the hell we were sent here on the weekend if the doctor wasn't even going to be there... but the residents all looked at how well he was doing and decided that they really didn't need to do anything major until Monday.

That night? The night nurse completely ignored the sign on the door and walked in several times on me pumping or attempting to breast feed (Dylan was completely too overstimulated at that point to even TRY to latch, so I ended up just pumping and giving him my milk via bottle). She also asked me if I wanted some blankets. I said yes, and she went to get them.....and never brought them. And since I didn't pack any clothes, I slept in the clothes I came in with no blankets and I froze my butt off.

Sunday? Complete waste of my time. I DID get to meet the elusive Dr. Sferra, and I stopped hating him because he was a really nice guy and was genuinely concerned over what was going on with Dylan. He explained that the direct bilirubin is a sign of something not working right in the liver, and he was nervous that it would be something really bad so he went ahead and brought us up. So just basically more bloodwork for Dylan, where they tested for the viral types of hepatitis, etc. They put him on phenobarbital in preparation for the HIDA scan they wanted to do 3 to 5 days later.

And the night nurse was the same woman, who walked in without knocking all night long again.

Monday: An ultrasound of Dylan's liver was performed. A different gastroenterologist was on for the week. Dr. Grunow. I'm sorry, but he was just precious. I love nerdy little doctors. lol... anyway he was MUCH more informative than the other guy had been. He even drew me a picture of gastrointestinal tract... where his doudenal atresia repair had been, the liver and gallbladder and the ducts that are supposed to secrete bile into the intestine, the liver by itself and how it's supposed to work as a filter of sorts, making fat-soluble-only material into water-soluble and sending into the intestines...etc. And he drew all of that on a paper towel. :) Anyway, he voiced concern that along with everything else going on, Dylan's hemoglobin level had dropped significantly from when he was there during his NICU stay. He asked if he had been bleeding externally, which, of course, he hadn't. So then he was a bit nervous that there might be something bleeding on the inside, but he kinda dismissed it and said he would just ask for another lab to make sure the number wasn't faulty.

Later that evening....

I'm changing Dylan's diaper and it's just slightly darker than usual. Nothing major, and it definitely didn't look like blood, but since Dr. Grunow had talked about his hemoglobin level being low, it made me worry. So I showed his nurse the diaper and told her about what Dr. Grunow had said. She kinda poo-poo'd (ha ha!) the idea of it being blood, but decided to do a little test on it anyway just to put my mind at ease. Lo and behold, it WAS blood! Which pretty much prompted me to text everybody in creation about how I was right and the RN was wrong. LOL So Dr. Grunow and his posse were contacted, and he decided that he wanted to do an upper GI scan to see what was going on in there.

That evening we had a different night nurse, and she actually knocked before she came in. I liked her.

Tuesday: This brings us to the first time Dylan was NPO. I pumped my milk and asked one of the nurses to put the milk in the breast milk freezer for me (they don't let people get in and out of that freezer so nobody contaminates anybody else's milk, so the nurses have to put it up themselves.) Her reply? "just put it on the counter in your room and YOUR nurse will put it up for you." I said "I don't even know who OUR nurse is! She hasn't been in here yet!" to which she replied "okay, I'll do it, hold on." And she walked away. And never came back. Our nurse finally showed up, and I asked her to put it up for me (breast milk's maximum time in room temperature is 4 hours. We were at like 3 hours and 45 minutes at that point). She said she would... but guess what? She left the room and did NOT take my milk!! By that time, the 4 hours was up and I had to throw away my milk. I thought back to my lactation consultant and I was thisclose to calling her, but it was time for the GI scan.

The GI scan showed that Dylan had an ulcer above where his duodenal atresia repair had been. From the pictures Dr. Grunow showed me, it didn't look too angry or irritated, but he still felt like that's where the blood in the stool was coming from. He contacted pediatric surgery to find out if the ulcer worried them with it being so close to their surgery site. Of course, pediatric surgery has MAJOR problems communicating and he didn't hear back from them that day at all. Meanwhile, he put Dylan on Prevacid to keep the stomach acids from irritating it further.

That night, we had a MALE nurse who also ignored the sign and walked in on me several times!

Wednesday: Other than blood work, nothing major happened at all. We met with the endocrinologist, who didn't really feel like Dylan's thyroid-stimulating-hormone was that significantly elevated, especially compared to other patients with Down syndrome, but he wanted to put Dylan on hypothyroid medicine anyway, since the thyroid has so much to do with brain development. We had the same male nurse who walked in without knocking all night long again. He also informed me at 3:30AM that Dylan was to be NPO for the HIDA scan he had coming up. But did he start an IV and get some fluids going? The answer, my friends, is NO.

Thursday: Dylan's HIDA scan is scheduled for about 8AM. Dr. Corbin had ordered a bolus of IV fluid for before we went, just to be on the safe side, but the jackass night nurse/day nurse that hadn't even been in the room at all by the time they came to pick us up at 8:30AM for the scan decided on their OWN that they weren't going to start that IV. When we got down to Nuclear Medicine, the sweet girls in there tried to get into a vein to inject the dye they needed for the scan, and Dylan's veins kept blowing. After they both tried and failed, they called for a nurse from MRI to try. She tried about 3 times with no luck. They all felt so bad. They finally called a charge nurse from NICU to come do it, and she got one on the first shot. By then, it was 10:50. The first part of the HIDA scan is an hour. By the time we got back into our room, it was noon. My baby hadn't had anything to eat (and no fluids at all, thanks to the genius nurses) since 3:30 in the morning. At that point, I threw a fit. I had had enough of the ignorance. His nurse started that bolus that should have been started BEFORE HE LEFT FOR THE SCAN. The charge nurse came in and asked if I had any complaints, and I told her that yes. Yes I did. And I told her everything. And guess what? She blew me off. The communication problem is all the doctors' fault, not her nurses. They didn't know the HIDA scan was going to take so long, that's why they chose not to give him fluids. And did I think of making a sign for the door that said to knock before coming in when I'm pumping? I felt like it was a total and complete waste of my time to even talk to her, and I wanted to go above her head right then, but it was time for the second part of the HIDA scan.

That night? With the "new and improved" sign that the dumbass charge nurse made that asked people to knock before entering hanging on the door, the same male night nurse walked in without knocking ALL NIGHT LONG. I finally said, WHAT, DID THE SIGN FALL OFF THE DOOR OR SOMETHING? He walked in on me pumping AGAIN, got embarrassed and walked out, but did he knock the next time? Nope.

Friday: They did the 3rd part of the HIDA scan (sometimes when they can't see the dye in the GI tract very well during the 2nd part of the HIDA scan, they have to do a 3rd part). While they waited and waited and waited for the results of that, sweet Dr. Grunow came in and said that Dylan is officially a puzzle. He thinks that the high bilirubin is caused by several things together instead of one big thing. He felt that, because his hemoglobin levels were still low, that Dylan needed some blood, and said that we could go home after that was done. So he ordered some blood for him. That process took about 2 skillion years. He finally started receiving the blood at about 5pm, and it took about 3 hours. Then 30 minutes later, they had to poke Dylan and make sure that everything tested okay. So we actually got to leave at 10:30PM. We got home at midnight. I finally got to bed at 2:30AM.
And how was YOUR week? :)

Tuesday, February 09, 2010

To be honest...

I started a post but it got whiny quick. SO I erased it. And I will try again to be less whiny later. That is all. :)

Wednesday, February 03, 2010

Hi, it's me, Dylan!

I'm taking over mommy's blog because I have a story to tell.

Once upon a time, I was in the NICU. They didn't let me eat anything for a long time.

They only let my mommy hold me when a nurse handed me to her.

My first taste of food was only Pedialyte.

Mean people (aka mommy) woke me up from my naps to check my temperature and change my diaper.

I was hooked up to leads that ALWAYS found a way to fall off, making this screen go beep beep.

I was fed lipids and other nutrition via central line.

I made bad football predictions.. lol..

I had nice nurses that my parents liked a lot (like the one sorta shown here), and really only maybe 3 that mommy and daddy didn't totally care for.

They stuck a tube in my nose because I didn't eat like they wanted me to in the time limit they gave me.

But those days? SO OVER NOW. I'm HOME!!!

So far, one of my favorite pasttimes has been chilling in my bassinet, but only if I can still hear or see mommy and daddy. If I'm awake, one of them needs to hold me or at least talk to me! They're not complaining at all about that, either!

I discovered this guy. He's my big brother. He's pretty perplexed as to what I'm actually doing here, but I know one day we'll be the best of friends.

I've also discovered that when I spit up on myself or get messy with my eating, I get this thing called a bath. I'm NOT a fan.

But I AM a fan of my parents getting me all snuggly warm after these bath things!

I'm also STILL a Texas fan, although they kinda blew it at the big game. Ah well, next year, guys!

So that's my story! I went from being 5 pounds and 18 inches to being 7 pounds 2 ounces and almost 20 inches. I went from feeling like a puppet because of all the cords and strings attached to me to being a free man with NO STRINGS. I went from the quiet NICU room I had all to myself (most of the time...roommates came and went, but they never stuck around for long) to sharing a home with a 2 year old who doesn't know the meaning of the word quiet. But life is good. I think I'll set up shop here and stay a while! :)