I completely forgot how incredibly difficult it is to sleep in a hospital. It's ridiculous, actually. The one place you need rest, and it's probably the hardest place to find it. As I laid down to sleep on our first night, I thought perhaps a helicopter was landing on the building next door, as the room seemed to vibrate and hum. After stirring a bit, I realized that 10 p.m. in the children's hospital was a great time to use the big machine in the hallway to wash & buff the floors. Then, it's getting used to listening to the feed pump rotate a half of a circle to give her stomach a tiny splash of milk every 30 seconds. Once I got through those initial noises, it was 'nigh-nigh' city for maybe an hour. Then, the feeding machine alarm goes off, out of milk. Meanwhile, Andi's having a ball kicking her legs and riverdancing, with what I perceived as excitement about the new environment and people to see. At 3 a.m., again - this is on our first night here, Andi's pulsesox alarm goes off. I get up to check on her, and she's playing with her cords... wide awake. I check her g-tube pouch, because the collection overnight had been growing quiet substantial. I was actually thrilled at the evidence, and was looking forward to seeing the volume collected. So, I check the bag, and it's nearly empty. Yep. Empty. The bag leaked and the whole contents are now all over her, her outfit and her bedding... just like home! Yea! I guess the only up-side of this disappointment was I didn't have to do ALL the laundry! Yippie. So, the nurse and I changed her, her bedding, and got the Bean simmered back down. At 5, we repouched her g-tube, trying to fix the leak to capture the leak. By 6, I heard someone come in, but I didn't even acknowledge them. I found out later it was her pediatrician stopping by to see her. Before he goes to work several miles away, he likes to check on his kids in the hospital. How many people do you know that committed to their work? Their patients? I can tell you that I know of only a handful of people that dedicated! By 7 a.m., it was the 3rd year med. student trying to get my input as to what all is going on, and how she did overnight, etc. As that med student is responsible for giving the report during rounds. At this point, I was begging for a Starbuck's. Smartly enough, there is one on the main floor of this building. Probably the best placed location ever, and probably one of the more profitable, as it is constantly busy. When I returned from Starbucks with my coffee & fatty yogurt parfait (have you seen the calorie count on one of those?) I sashay back onto the floor and promptly see my favoritest nurse coming down the hallway?! "what are you doing here?" "are you here to visit?" Had I been more alert and feeling sarcastic, I could have fed her a great story of complete b.s. Instead, we caught up and she came to see the Bean. Another one amazed at her growth & development. I forgot to mention that Andi is awake during most of the night too, and we both have had very little rest.
The day was a lot of activity and a lot of nothing. We had more blood tests and a urine sample. Then we had an echo cardiogram. We're scheduled to do a sedated echo mid-April, to get in and measure the pressure on the right side of her heart - which is where she had the pulmonary hypertension post heart surgery. We're hoping that test will yield answers to if she can finally get off the Viagra! Yes, our Bean is still on Viagra... (Sildenifil)... In any case, they wanted to do the "Echo" to see if her heart was contributing to the lack of weight gain, as it definitely played a role pre-heart surgery. In addition to that, we finally had a gastric emptying test, AND, we had an actual Pediatric GI Dr. come to visit us! Now, that's a lot of activity and tests to have in one day. As outpatients, we would've had multiple appointments, days, and trips to get all that done. Pretty much makes the $300. a night co-pay worthwhile, as that saves us a lot of time and work getting tests and results. Lastly, we spoke with dietary again and she recalculated the numbers on our formula recipe. Turns out I wasn't making Andi's 27 calorie Neocrap strong enough, and it was coming out to around 25 calorie. So, that's a small contributor or explanation of why she lost a few ounces these past two weeks. As for the g-tube pouch... we only got a partial amount bagged and measured. It continued to leak out all day, but, the partial was enough of a collection to get a few heads shake -- as in, 'that's just not right.'
So... the verdict thus far. The 'echo' "looked good." Meaning, they don't have reason to believe that her heart is a contributing factor to the lack of weight gain. Her gastric emptying tests initial results showed that her stomach was moving the food fairly normally. However, the nuclear physicist (yes, nuclear... the test puts a nuclear substance they can trace into her formula...so she's glowing from within!) wants to review the data more thoroughly, as she didn't see a problem with the stomach emptying, but she definitely saw the leak out the g-tube. She isn't here today, so we won't know her final review until Thursday. We saw the G-Tube nurse/specialist and she blew up the balloon inside Andi's stomach from 3 ml to 5 ml. She was thinking that maybe that was the cause of the leak....the balloon wasn't filled - so it didn't pull the stomach to the abdomen wall tight enough. She's supposed to check back in today to see how it's changed. I've told her that we've tried everything from 3 - 5 ml., different sized buttons, different lengths... and we still leak. Again, she confirmed, g-tubes leak... but they shouldn't leak that much.
Throughout the afternoon, Andi's eyes grew darker, heavier, and despite trying my whole bag of tricks to get her to sleep, nothing worked. New environment of many people, lots of people picking at her, and none of it allowed sleep. By 6 p.m., Andi and I were dragging... but, our good friends came by to see her, and her Daddy arrived - so after begging Andi to sleep while we were gone, we left her for a spell and the four of us went to a super yummy dinner. When we returned to the floor, we were asked at the locked door (you have to be buzzed in) what we wanted (visiting hours were over) and I rather casually said, 'uhm, we live here.' We get buzzed in and there's our nurse holding a very fussy Bean in her pink tutu, up at the nurses station. Apparently, Bean didn't want to be put down, and she wasn't too keen on sleeping either. With Mommy & Daddy flocking her bed, the Bean was all smiles and riverdancing again, dark circles under her super sleepy eyes. I asked the Attending Ped. earlier that day if she could have something to help her sleep. We agreed she could have some Tylenol... so, by 10 p.m., she got some of that - and by 10:30, I think both the Bean and I were snoring. The next thing I know, it's 4 a.m., and Andi's getting a urine bag placed, and just a little whiny. I'm warned that the vampires are coming at 5 to get more blood for labs. I roll my eyes and shudder at the thought. We go back to sleep. Minutes later, the building fire alarm goes off. Lights in the hallway flashing, the siren buzzing. I say out loud, 'you've got to be kidding me!?!' and then start to imagine how the hell to get off the penthouse floor if there really was a problem. I start reliving the movie, The Towering Inferno, and roll over again. An announcement I can't hear except for two words you don't want to hear in the hospital, 'code red', signals the end of the problem. The siren stops, the lights flash for another 15 seconds, and then it's done. I remember feeling thankful that I didn't have to claw my way down the stairs with Bean on my arm, fleeing the inferno. A few minutes later (no joke!), the lights and siren start up again, but only go off for a half of a minute. Silence. I roll over and start to drool. For maybe two minutes, then... the vampires arrive. I roll off my bed, which is really a bench with a pad on it... and, notice it's 5:05 a.m. "Ah, Starbuck's is open!!!" So, I put on my slippers and stroll down to Starbuck's in my Blazer's PJ's and sweatshirt. A vision, I'm sure. Miss Perky behind the counter greets me and asks how my morning is... 'ooh, g-oo-d.... just enjoying the fire alarm wake-up call'... she laughs. I laugh at myself. When I'm asked at the door to be buzzed in, I just reply, "I'm just trying to get back in!" When I'm buzzed in I take two steps and then I hear the familiar cries of my Bean in agony. Vampires suck!!! The lady blew her two chances to get the blood work, so they called "Panda." Panda is a group that's usually in-house that specialize in getting blood out of the difficult people. Panda arrives... more horrific crying, sad and tired eyes glaring at us all as if to ask, "why the hell are you punishing me!!!" The Panda lady uses a light to find good veins, warms up the selected hand, and then gets some out, but then has to pull the needle. She gets the blood to drip out and scoops it up with the vile. Good times. Nothing like seeing and hearing your baby shriek in horror first thing in the morning. So, in my disgust I told Andi in front of the blood sucking lady... "tomorrow, we'll just tell them they can take their labs and shove 'em!" Seemingly semi-offended, she asked our night nurse why they need the labs again. We're not sure, but it sounds like her potassium is low. More questions for me to find out about today. However, at 4ish our nurse pulled the g-tube pouch up over the mic-key, and the bag started to collect. By 5:30ish, she emptied the contents and found she'd leaked 45ml. Granted, between that time, the Bean was under extreme duress with vampire #1 failing to get her blood, twice. After the Panda lady, our nurse drew another collection and I didn't get the measurement, but again - a nice volume was collected, although under duress.
In any case, I swaddled the Bean in her cozy blanket and she's been sleeping soundly ever since. I'm now on my second large coffee from Starbuck's. Last time we lived here, I suggested that Starbuck's delivers to our room, but now, I think parents in need should just get an IV drip o' Starbuck's. And just for the record, I think Kobo's coffee is 100 times better.