Home Sweet Home

For those of you that may be wondering why I haven't updated on Grace's surgery, the main reason is that I haven't been home. Finally today, after 5 nights in the hospital we were discharged and are at home. Here's a recap (it's nice and long, but I like to have all the details for posterity):

Wednesday
Eric and I got up and dressed and got all of our stuff together. We woke Grace at the last possible moment and got her dressed and headed to the hospital for our 8:00 a.m. arrival time. Grace wasn't allowed to eat or drink after midnight, so I was concerned she'd let us know that she wasn't happy about missing breakfast. Surprisingly, she was an angel and didn't fuss or cry at all before surgery. Once we got to the hospital we registered at surgery and were triaged by a nurse. Grace put on a cute hospital gown and had all of her vitals and history taken. After that they took us up to the surgical floor and we were given a room to wait in. They told us they'd come take us to pre-op about 30 minutes before her surgery (surgery was scheduled at 10:10 a.m.). We had about an hour and a half to kill, so while we were waiting we went to a playroom. Grace found stuff to keep her busy and made some new friends. Then we went back to pre-op. In that room, she decided she needed a nap, so she fell asleep in my arms while I rocked her. When it was time to go to surgery, she sat on her hospital crib and just looked around while they rolled her away. I got a little teary eyed, but then Eric and I headed to the surgery waiting room. They told us that they would be doing her tubes first and the the palate repair, so to stick around the waiting room because the ENT would come talk to us when his part was done. So we waited. And waited. Finally around 12:15 (about an hour and a half later), the waiting room receptionist told us the doctor was on the phone. That scared me a little, but I took the call. It was the plastic surgeon telling us that he had completed the palate repair. I asked if the tubes were done too, and he said those were done before he started. He said her surgery went well and that she was on the way to recovery and would be there for about an hour. Apparently the ENT surgeon didn't feel it was necessary to tell us he was done. After the phone call, Eric and I went to the cafeteria to get some lunch while Grace was in recovery. After eating we headed up to Grace's room (we got the room number in the waiting room). They had just dropped her off. She looked so pitiful in her "welcome sleeves" and she was so groggy, hooked up to an IV and pulse/ox machine, and was trying to cry. The nurse told us to keep her from crying if we could, because crying would hurt her throat and mouth and make her feel even worse. We just held her and cuddled her alot. We were told that the goals for going home were to have her eating and drinking. We started with a liquid diet and would move to purees. That afternoon she slept alot, but she took a bottle in the afternoon and I think even ate some jello around dinner time. The nurses thought she was doing great, so they took her off the IV fluids. They left the line in her hand though, just in case. We also got a visit from our minister that afternoon and we told him she was doing great! Only one parent was allowed to stay overnight, so around 7:30 p.m. Eric headed home and I put Grace to bed. She didn't sleep very well, but it was mostly because she couldn't roll over with the sleeves on, so every time she'd try to reposition she'd wake up and cry. Oh yeah, one piece of good news was that in pre-op when the surgeon saw her teddy-blanket (the comfort object we brought with us) and saw that she liked to chew the arm, they said it would be fine for her to have after surgery because it was soft. I was really worried because Grace uses it as a pacifier to sleep and I didn't know how she'd feel without it. Overnight the nurses would come in and check vitals every 4 hours and I remember at one point them telling me she had a fever.

Thursday
Grace woke up for the morning around 6:00 a.m. I decided to give her breakfast. She ate a jar of bananas but wouldn't take her bottle. She acted really sleepy again, so we went back to sleep. Around 7:00 a.m. the plastics resident stopped by while doing her rounds. She checked out the palate and said it looked good. She also listened to Grace's chest and said she heard something and wanted to do a chest x-ray to check it out. About that time, Grace decided the bananas didn't agree with her, and vomitted all over herself. She was laying down and it got all in her hair. Grace's 8:00 a.m vitals showed she still had a temperature of around 102 degrees (I can't remember exactly). Eric got to the hospital around 8:30 a.m. and soon after, an orderly came to get us for her tests. He told us he was there to take us to nuclear medicine. I asked if that was for the chest x-ray and he said it was for nuclear medicine. We decided to go with it, but that didn't sound quite right to me (I spent time in nuclear medicine for my bone scan and MUGA scan. X-rays are in radiology). They took us down to a room and the tech came in and asked if they had explained the test to us. I asked if it was the chest x-ray. She said no, this test was for kidney function. They would inject an agent and then do an hour and a half scan to determine if the kidneys would pick it up and excrete it as appropriate. If not, they'd give her something to help her urinate more and kick-start the kidneys. Eric and I looked at her like we were a little scared. Eric then told her that since he just got there, could he explain why they needed to do this? She said that they wanted to see how her kidneys were working and because she had a Urinary Tract Infection (UTI). I then said that I knew she had an ear infection, but not that she had a UTI and that this morning our doctor had only mentioned that she needed a chest x-ray. This prompted the tech to check out Grace's leg band and at that point they realized that they had the wrong baby! A minute later the x-ray tech came in and said that she had just called up for us. She took us over and did a quick x-ray. Grace didn't like being held down, but it only took about 2 minutes, so it wasn't bad. Sometime that morning, Grace also managed to pull the IV line out of her hand. They decided to leave it out, hoping we wouldn't need it. Around 11:30 a.m. Eric offered to let me go home and take a nap, so I did and planned to come back around 3 p.m. (By the way, after the bananas Grace hadn't eaten anything plus she'd been running a fever all day, so we were preparing for a possibility of another night in the hospital. Eric called me at home around 2 p.m. to tell me the chest x-ray came back and Grace had pneumonia. Also she had a temperature of 103.6, so we were definately staying another night. Also, since she wouldn't eat, they needed to put the IV back in, so they could start her on fluids again and they wanted to give her IV antibiotics for the pneumonia. It took an IV team to get her IV back in (they took her to another room and had Eric and I stay behind). The only other thing I remember about Thursday was that she was so lethargic all day and had quite a fever. Since surgery she'd been getting Tylenol with codine every 4 hours, but still couldn't break the fever. At some point they started giving her Motrin too and finally between 9 and 11 p.m. her fever broke. Here's a picture from Thursday. It's obvious she felt awful.



Friday
No fever! Friday morning when the plastics resident came by she said that they wanted to see her fever free for 24 hours, but if she started eating and drinking, they would maybe let her go that night, but more likely Saturday morning. This was a bummer for multiple reasons, one being that Danialle and Erica were coming in for the weekend. She cut the IV fluids in half to help encourage Grace to eat. She also set us up with a general medicine doctor to deal with the pneumonia issues. She stopped by about an hour later and said that the blood work they did on Thrusday showed that Grace had a bacterial infection in her blood. Most likely some form of strep. That explained the high fevers and why she was so miserable. However, the antibiotics they started her on Thursday were working, but they wanted to give her 3 to 5 days via IV, which meant we needed to stay all weekend. I called the girls to see if they still wanted to come since we were going to be stuck in the hospital all weekend and they said yes. The only other medical issue on Friday was that Eric and I were concerned that Grace hadn't had a bowel movement since Tuesday. We had asked about it before, but they said that was fairly normal after surgery. During one diaper change on Friday though, I could tell that she was trying to go, but it just wasn't coming out. We called the nurse and she came and gave her a suppository. She said to call back if she pushed it out. About 5 minutes later we had to call back. The nurse came back and saw that Grace was really trying to go, so she had to help her out a little. It was so awful to watch, but she got out the piece that was blocking everything up and after that, it was smooth sailing for Grace. She definately made up for the 2 days of no poop. Friday was also much better because Grace started feeling better. She started eating at every meal time. By noon they took her completely off the fluids, which meant she wasn't hooked up to the IV (they just injected the antibiotics into the line in her hand 2 times a day). She also started getting down and playing instead of just sleeping and having us hold her. Here we are when she feels better.



Eric went back to the house in the evening to let Zeus out and meet Erica. Then they got me some dinner and came back to the hospital. Danialle's plane was supposed to get in at 8:15, but kept getting delayed. Eric decided to stay overnight with Grace and let me visit with my friends. Finally around 10 or so, Erica and I went back to the house and I started a load of laundry and we waited for Danialle to call and tell us she finally left Chicago. That call came at midnight. Her flight landed at 1:00 a.m. and we got to bed around 2 a.m. So much for getting more sleep at home!

Saturday
I meant to get up at 7 a.m., but couldn't get quite do it. At 7:45 a.m. we got up and then made it to the hospital around 9 a.m. We just hung out with Grace and had a little girl talk. After about 2 hours, Eric decided he'd had enough girl talk, so he decided to take a break and go home for a while. He came back around 6 p.m. to let us girls go to dinner. The plan was I would come back after dinner and stay overnight, but he called a little while later and told me to have a good time and come back in the morning. We went to Olive Garden and ate and talked. Seems we can't hardly do a Girls weekend without eating Italian! We were all so tired, that after we got back to the house, we talked for a bit and then were in bed by 10:30 p.m.

Sunday
We got up and made biscuits and gravy for breakfast and headed to the hospital around 11 p.m (per previous agreement). That morning they took blood from Grace to test to see if the bacteria was gone. The results took 24 hours though, so we'd find out Monday if they were clear and she could go home, if not, we'd do it again and try Tuesday. Eric left and went home to watch the Colts game in peace. We watched the game at the hospital too and were very of course disappointed by the outcome. Around 6 p.m. Eric came back and brought us BW3s for dinner. Grace was her normal self, just very bored being cooped up in her room. We did have toys and stuff, but she wanted out! She got a little fever, but after a dose or 2 of tylenol, it went away. By this time we were only doing tylenol on request rather than every 4 hours. At around 7:30, I said goodbye to my friends and they went home with Eric. We were hoping that Grace would go to sleep better without so many people around. She did fall asleep and go down in her crib around 8 p.m. By this point in the weekend we were starting to have sleep issues. Because we were in the room, she wouldn't let me put her down awake, so I have been rocking her to sleep. Unfortunately, she started complaining when I'd put her in the crib afterwards. Sunday night she slept from 8 until 11. I tried to go to bed around 11, but Grace was up. I would rock her and then put her down and she'd wake right back up. Around 1:20 a.m. she stayed asleep for 30 minutes and then was up again until 3 a.m. At this point I'd only had 30 minutes of sleep, so I put her in the crib awake and very mad and layed down and ignored her. I decided I'd count to 200 and if she was still crying I'd try to rock her again. We both fell asleep before I got to 150. We slept until 6:15 a.m.

Monday
Grace and I were up at 6:15 a.m. Nurses came in to do vitals, I fed her breakfast and then the doctor stopped by. She said that the cultures were negative at 15 hours, but she'd check again around noon. In the meantime she'd start our discharge paperwork, so we could leave if they were clear. The morning couldn't go fast enough. Erica left from my house, but Eric and Danialle came by the hospital before she had to go to the airport. While Eric was taking Danialle to the airport, the nurse came in and told us that the cultures were clear and we could go home! She brought me all the papers to sign and gave us our instructions and prescriptions. Eric came back in the process. I was packing like the house was on fire and we had 5 minutes to get out. I've never wanted to get home so bad. We left the hospital and were home by noon. I gave Grace her lunch while Eric went to get her prescriptions filled. Then we both took a nap. Grace seems much happier at home although I think she was running a bit of a fever late this afternoon. We just keep giving her the tylenol!

Tomomorrow (technically today since it's after midnight) I have to go back to work. Eric's staying home and my Mom is arrving around noon for the week. It will be nice to have help, because it's a little exhausting. Luckily, Grace doesn't seem too bothered by the arm restraints ("welcome sleeves") and has figured out how to sleep with them on. Wednesday, someone from church will come watch her while Mom takes me to get chemo. I'll try to update again then.