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The rest of the hospital stay

(I started this at the hospital but was too tired to finish it there and it's too much of a pain blogging from my phone & the iPad so I'm finishing it now that we're home and I've forgotten what happened when. :)

Today (Tuesday) was better than yesterday but we're still at the hospital. Aside from having to change wet bedding twice and having a lousy blood draw at 1am, we had a better night's sleep.
For some reason, nobody ever listens to me when I tell them that they won't be able to draw back enough blood from her IVs to use for labs. All they needed was 1ml but they couldn't get it from the IV. "But it flushes great! I don't understand..." Yep, they always flush great but you'll never get enough blood for labs from them. 

We had to get her up at 5 to change sopping wet bedding and realized she was running a fever of 103.6 again. That was really disappointing because I had expected her to be past the fevers by today and that was the highest it had been since we were at the urgent care. She went back to sleep and had another good stretch of much-needed sleep. A couple of volunteers came by with a different therapy dog. She was more in the mood for it today and the dog they brought today was much smaller and less intimidating. She liked him.

 Earlier in the morning, the resident had told me that the urine culture from urgent care had never been sent to a lab. That was extremely frustrating news since we needed to know what bacteria was growing so we'd know what would be best to treat it with. Later on the attending said she had tracked it down and that they knew what bacteria was growing but were still waiting for sensitivities before changing her meds. Her fever came back again in the evening, which again was really frustrating because A. she should be past that point now, and B. it means another 24 hours of being here.

Another very sweet friend was kind enough to go over to our house, get some clean clothes, and bring them to us along with some lunch for me. Having visitors makes the time go by so much faster and is very much appreciated. I also got to meet up in the cafeteria Monday night for a little snack with one of my local tubie momma friends that I hadn't gotten to meet in person yet. Her son has been here for about 2 weeks and it was really nice to get to take a break and chat with her. I feel so incredibly blessed to have so many "medical momma" friends in this area. I wish I had known more people when we were first starting out with all this but most of them hadn't been thrown into this medical world yet at that point.

Since Raya kept having fevers Tuesday too, the attending decided we needed to look into other possible reasons why, just in case we were missing something. The biggest item on that list was a renal ultrasound. They were starting to get concerned by the symptoms Raya was having (ongoing fevers so many hours after starting IV abx, back pain, belly pain, feed intolerance, etc.) that maybe she had an obstruction or pocket of infection in one of her kidneys. We also decided to do a viral swab to see if maybe she had a virus that we weren't catching. I really REALLY doubted that she had a virus because there was absolutely no sign of anything but still felt like we should look there anyway. I think the viral swab was probably the most traumatic thing she had done the whole time we were there. We did it in the treatment room because I didn't want them traumatizing her in her bed. To do it, they take what looks kind of like 2 long Q tips with the cotton ripped off, put one up each nostril, and rub them around for 10 seconds. I think it's pretty easy to imagine how good that would feel...  When they were done, she got to pick a prize from the prize bucket. She picked a light-up butterfly wand and was SO excited about it! A little while later, it was time to go downstairs for the renal ultrasound.

Unfortunately I forgot that just having tests like viral swabs run with results pending means that you're automatically on isolation, so she had to wear a mask all the way down and was not a fan. I sat in the wheelchair and she sat on my lap and we got a nice ride. Well, it was nice but by the time we got to radiology, we had heard the transport guy's entire life story, including details of his frustrating financial life.

The ultrasound experience was rather frustrating too. There were 2 people in the room and I didn't realize at first that the one doing the ultrasound was a student until the other one had jumped in a couple times and corrected her on certain things. She did fine on the ultrasound but it took FOREVER, and her bedside manner with children is not quite there yet. Raya was a little panicky at first because of how many times she'd been poked and had JUST finished having swabs shoved up her nose, so I think she and I both would have appreciated a faster ultrasound. Once the tech was done, the two ladies left the room and said they had to go show the radiologist the pictures and make sure they'd gotten all the views they needed. I expected them to be gone for 10-15 minutes but 45 minutes later, they FINALLY came back and called transport to come take us back to our room.

The ultrasound looked pretty good except for an area of dilation in her left kidney. The night attending told me that what that meant was the infection was creating higher-than-usual pressure below her kidney that was disrupting the normal drainage of her kidney, and that's what was creating the dilated area. In the grand scheme of things it was great news considering that they had been concerned about a possible kidney stone, blockage, or pocket of infection so nobody was worried about it.

Aside from the tests she had done Tuesday, she was feeling good enough to get out of her bed and play a little. She was also off of IV fluids (thank heavens) so she got some time where she wasn't tethered to anything. (because hospitals sometimes don't keep kids on their normal feed/med schedules like their parents do at home...) Child life had brought her a whole bunch of fun things after the viral swab so she sat on the bizarre specimen of a couch and did her new puzzle for a while. (seriously, weirdest couch EVER)

 We also snuggled in the chair and watched tv a little and texted a picture to Daddy and big sister.

 She felt pretty good most of the afternoon and then in the late afternoon/early evening, her fever came back again. They gave her Tylenol and it went away, then it came back again around 9:00. She's also back to sweating profusely every time she falls asleep, which I'm told is an autonomic issue.

 The night nurse said that she needed to draw labs at 11:30pm. I told her that we would need to draw them from somewhere other than her IV since it had gone so badly the night before when they tried to draw blood for labs from her IV. At that point, her IV was starting to not look so great anyway and they decided it was just as well that they placed a new IV while they were doing labs. I felt so bad pulling her out of bed at 11:30 at night just to take her down the hall and let them poke her.

It turned out to be as bad as I expected it to be. Raya has tiny veins. I told the nurse that we usually call IV team but she wanted to at least try first and get the blood for the lab work. I swear, I'm going to put my foot down next time somebody says that they don't need to call IV team. I get that they place a lot of IVs and they may be confident in their skills, but I'm so tired of watching my girl be their pin cushion. That nurse tried probably 2-3 times before deciding that she'd call IV team to place the IV and just do a finger poke to get the blood for the labs. That meant that she poked Raya's finger with a lancet and then for about 5-10 minutes, she squeezed out drop after drop into a vial until she had enough blood for the test they needed to run. The whole time, Raya laid there and cried and said, "Owie!" over and over. After that, they left her alone for about 20 minutes while they waited for someone from the NICU to come up and try placing a new IV.

I opted to stay in the treatment room and wait rather than tease her by taking her back to her room and then bringing her back to the treatment room. Even with a special vein finder light and the tiny catheters from the NICU, the NICU lady ended up blowing 2 veins in one hand, couldn't find any useable veins in either foot (thank goodness, foot IVs are awful!), and eventually settled on using the big vein in the bend of Raya's elbow (the one you'd use to donate blood from). That is not an ideal place to put an IV in a little kid either but it was the only vein big enough for them to be able to draw back from and it was also MUCH more comfortable for Raya when they flushed it. Until then, because the vein in her hand where the previous IV was had been so tiny, she screamed every time they flushed it. Almost 2 hours later, they finally had their 1cc of blood and a new IV in. Yes, almost 2 hours of helping hold my child still while she got poked no less than 7 times, had her finger squeezed until they'd gotten enough blood to run labs with, and had catheter after catheter dug around in her tiny veins which blew 2 veins. And yes, she screamed and cried and begged to go back to her room or go home the whole time. To her credit, even as much as she screamed and cried, she still didn't fight them and she held still while they poked her. At one point when she and I were alone in the room, she asked me when she could go back to her room. I told her that they needed to put in a new IV that wouldn't hurt her when they flushed it so she just needed to be tough for a little bit longer. Her eyes filled with tears again and her lip curled down and she said, "But Mommy, I don't WANT to be tough! I'm not THAT tough!" And THAT is the part that I hate the most. It's just not fair to ask so much from little kids but when it has to be done, it has to be done.

We did end on a funny note though. She had been talking the whole 2 hours about getting "surprises" when she got done from the "surprise box" like she'd gotten earlier in the day. One of the nurses got the box out while the other one finished taping her elbow so she couldn't bend it. They pulled out some Barbies and said, "Oooh, look at this one, she's so pretty! Do you want this Barbie or this Barbie?" Raya just stared at them, completely unimpressed. They seemed shocked that she wasn't interested in the Barbies so they started digging through the box. One of them moved something and Raya caught a glimpse of another butterfly wand like the one she'd gotten earlier. That was all she needed to see and she knew she wanted it. She had a smile on her splotchy, red face and hugged her new butterfly wand while I carried her back to her room. As we got her settled back into bed, we noticed that once again, she was running a fever. We waited half an hour and checked again just in case it was because of all the excitement but she was still too warm even after waiting.

Thankfully, Wednesday was a much less eventful day. We didn't have to leave the room for anything and only had vitals checked a few times and did normal stuff like meds & formula. That day, they did a fabulous job of doing everything on schedule too so that was nice. She's getting so big. I was proud of her for standing still while the tech did her vitals in spite of how traumatic things had been the night before with the labs & IV placement.

We also finally got a chance to give her a shower (hence the plastic bag taped around her IV) and she felt much better after that. The rest of the afternoon, she played and watched Jake & the Neverland Pirates on the iPad. (soooooooooo sick of that show!!!) She was pretty happy most of the afternoon.

Of course then her fever started to go back up right around 4:00, so that was frustrating and disappointing. Tylenol nipped it in the bud really fast but a fever is a fever and they had said she couldn't leave until she was 24 hours fever-free.

Her preschool teacher had emailed me earlier in the day and asked if she could pop in for a visit. I thought maybe she didn't realize how far away we were since there's another children's hospital closer to where we live, but she still came to visit even though we were a good 25 miles from home. She has been such a great teacher and has been so cautious and careful about Raya's medical needs and the needs of all the kids in her class. She is one of those teachers that you hope & pray your kids will get and I'm so, so thankful for her. Raya was thrilled to see her. :) It was super sweet of her to come too because not only was it a good 40 minute drive, but she hadn't even been home from work yet and it was after 7:00 at night when she came.

Thursday was also pretty uneventful. I spent most of the day watching the clock and feeling her forehead and reminding her to not get a fever so we could go home. We also did her puzzle about a dozen times.

She realized at one point that she could reach both bed rails at the same time with her feet and wanted me to take a picture:

She watched another couple dozen episodes of Jake & the Neverland Pirates (heaven help me) and then got her little heart broken when I took the iPad away and made her find something else to do:
(meanest mom EVER)
She got over it after a few minutes though and started playing with her toys again. She was definitely feeling better than she had all week by then. (and that was due in large part to the formula room getting several hours behind schedule. she always feels good when she's not getting fed.) The attending had come in late in the morning and we talked about going home. She said that they typically like to have kids tolerating full-strength formula and their regular feeds before leaving but when I reminded her that dysmotility has always been an issue and that I've been managing feed tolerance issues at home for the last 4 years, she was fine with sending us home. She said she'd get the discharge orders going but that she still wanted us to hang around until 4 or 5 to make sure the fever wasn't going to come back. I mentioned something to the nurse around 4:00 about going home, and she was surprised & said she hadn't seen any discharge orders. Ack. She came back a few minutes later and said that the orders HAD been active but that they were now on hold and she was going to do some checking and try to find out why.
We snuggled while we waited to leave. :) I do love all the snuggles and 1-on-1 time with her, even if it is at the hospital.

She came back a few minutes later and said that it was probably because Raya wasn't on full feeds and they don't like to send kids home unless they're tolerating full feeds. Ugh, seriously?! I told her I'd already had that discussion with the attending. A few minutes later the resident came in and I explained to her that we would be totally fine managing Raya's feed tolerance problems at home since it was very normal for her to have this problem after being sick, and that the attending had been fine with sending us home. She agreed that we could go and said she'd start getting things going again. After a major ordeal getting all the tape off her arm so we could get the IV out, we were finally out the door and on our way home at 6:45.

We stopped at the pharmacy on the way home to get her oral antibiotics and found out that the resident had marked "dispense as written" on the prescription. That was a problem. It means that the pharmacy can't substitute a generic drug for the name brand, but NOBODY carries the name brand of that drug because it's so much cheaper to get the generic. Not only that, but Raya's secondary insurance through the state would not pay for the name brand drug anyway. After several minutes of phone calls, the pharmacist was able to get a hold of someone at the hospital that could authorize substituting the generic. Whew. I dropped Raya off at home, came back to pick up the medicine, and then went home again to unpack so I could wash all my clothes and repack my hospital bag for when this baby decides to come. It was most definitely NOT how I planned on spending my week! We're glad to be home and I'm really, really glad Raya is feeling so much better. It was really lousy seeing her feel so awful. Now it's time to get ready for Feeding Tube Awareness Week, which starts tomorrow!


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