Friday, July 27, 2007

The long story

I never quite got around to posting the entire, hellish story of Trystan's ER visit and surgery last week. We've been playing catch-up ever since. The weekend before the surgery, he got sick and started throwing up, but as Charlotte had acted sickish and had some loose bm's earleir in the week, we thought it was a stomach flu at first. We didn't get much sleep that weekend. By Sunday afternoon, he had stopped passing stool, which was a really bad sign--he didn't even have any gas. As all of his bm-related "emissions" are captured in a little bag glued to his tummy, it's exceedingly obvious just how gassy (or not) that he really is all day.

The ER visit was not fun. I took him myself, and my husband stayed home with Charlotte. That was not the best decision. We should have found a friend to watch or take Charlotte for the evening and gone together. The Children's ER is just not set up well for babies. The little exam room had a hospital bed, not a crib. In other words, there was no safe place to put down a rolly little baby. Also, I couldn't leave him for more than a scant minute or two with the nurses because they have other paitents they are responsible for. That made going tot he bathroom and getting dinner rather difficult. They were really nice and managed to order me some food from the cafeteria around 9pm.

Trystan's IV took 2 attempts. The first nurse checked both arms and dug around in one for a minute or so before giving up and going for help. Another nurse found a vein in his foot. That was fun. Then they had to put in a "NG" tube--a thin tube down his nose and into his stomach to suction out the contents. He screamed for 10 minutes straight after they put that in--he was so inconsolable that they did an extra X-ray to make sure it was positioned right and not hurting him more than it should have (it was fine...he was just MAD).

They did manage to find me a breastpump after I'd been there for several hours. I have a couple of pump kits at home from Charlotte's and Trystan's NICU stays, and I'd brought what I thought I needed with me. Unfortunately, they brought me the wrong kind of pump--they brought a "Lactina" and I'd brought parts for the "Symphony". I have Lactina parts (the kits they give you have stuff for both), but have never actually used one (the Lactina is an older model of hospital-grade pump, and I've only used the newer Symphony ones). The pump kits are mostly the same with a couple of extra parts to make the Lactina work, so I ended up with another set of pump parts (I've got quite a few sets now...). We finally got admitted around midnight and moved up to a real room with a real crib that could safely contain a baby.

There was a sort of daybed that I could sleep on, and I did get a little sleep. I got up once or twice to comfort Trystan between midnight and 5:30AM, when someone came in to draw labs (another needle stick--this one in the other foot from his IV). Around 6:30 we headed down to Radiology for the first set of X-rays. They put contrast dye down his NG tube to his stomach and took pictures. We headed back up stairs, then back downstairs again around maybe 7:30 or 8 to look at his intestines. More dye went down until Trystan threw it all up (along with what little stomach contents he had) all over me. Around then, my husband arrived after having taken Charlotte to daycare. We then got the pleasure of holding Trystan's hands while they put dye up through his stoma (the opening to his intestines where he normally passes waste). The shoved enough dye up that way that it eventually came shooting back out with force all over the table. The result of all of this baby torture was that they found a spot where his small intestine narrowed to almost nothing, where something was blocking it. Every time we would start going to X-ray again, someone would ask if there was any chance I could be pregnant--a necessary question since the X-ray would not be safe if I were, but after about half a dozen times, you start getting a little paranoid...

The surgeons were obviously seeing the results of the x-rays rather quickly, because when we got upstairs after the second (third?) set, we were told that they were on their way to get him to prep for surgery. Unfortunately, they had not yet told us just what surgery they were going to perform at this point. Communication was not their strong point--as evidenced by the phone call I'd received earlier that morning asking whether Trystan was coming in for his scheduled procedure ("Um, we were admitted through the ER last night and are in a patient room right now...I thought your group knew about that last night?").

The surgery went fast, and seemed to involve the least complicated of the possible outcomes. He just had scar tissue from his first surgery that needed to be removed--other possibilities had included removing dead intestine, more invasive things, etc. The rest of Monday was more peaceful. Trystan mostly slept. The nurses found me a Symphony pump (much much much better than the Lactina). I got to go home that night and sleep in my own bed (without interruption for the first time since Thursday night).

Tuesday Trystan was mostly just drugged and only a little fussy. At one point, he was acting like he was in some pain, and the nurse got pain medicine for him. She walks into the room with something in a pill cup and pulls out a pair of rubber gloves. "He's really not going to like me," she said. "It's a suppository." I almost laughed out loud before I asked whether it could go into his stoma. Heck, we wouldn't be going through so much drama if he had a place to put a suppository. The nurse got a kick out of it too when she realized what I meant--and the ordering doctor was a bit embarrassed. He got pain medicine in his IV instead.

Wednesday was worse, because Trystan felt better. He started passing gas and a little stool (or maybe it was X-ray dye!) into his ostomy bag. He wanted to be held, and was clearly hungry. He kept trying to suck on my arms and shoulders and was really mad if I tried to sit down with him or cradle him, because he wasn't supposed to breastfeed yet. I spent several hours holding him straight up and down against my heart and bouncing, because it was the only thing that he didn't scream about. Finally around 6 the surgery team decieded he could try eating--a single ounce of pedialyte, followed by another single ounce of pedialyte 3 hours later before any milk. My nurse that afternoon had seemingly vanished, and I got exceedingly irate trying to get help from the other nurses to bring the pedialyte so I could feed my starving baby. I was sorely tempted to just sit and nurse him, doctor's orders or no, since I had plenty of milk and he would have been willing.

He did, finally, get something to eat and his NG tube out. By Thursday morning, his IV was out, he could breastfeed, and they were ready with his discharge papers. He was in such a good mood all day Thursday--smiling at everything, and ectatic to be home and see his toys, and to eat. His appetite was still a little slow over the weekend, but mostly back to normal by Sunday afternoon. He was very fussy all weekend--probably a combination of lingering discomfort at the incision site, and all the new gas an stool passing through his tummy again.

They had told us that he was cleared to go to daycare "as tolerated", so he went and did fine on Monday and has been good all week. He is attempting to make up for lost time (and weight) by breastfeeding constantly the last two days while I was off week. The bandage covering his incision is still attached, but should come off within the next couple of days.

His next surgery (the one originally scheduled for a week ago) will be in another month or two. I just hope that we don't have a weekend full of drama before this one!

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