The last few days have been very eventful. Friday, Raven had the MRI and we were nervous to see if the infection was spreading to the bone. The doctor came up to the room about an hour or so after the procedure and gave us the good news that it was not spreading and that it was only in the soft tissue. We were definitely relieved. He also told us that we’d just continue to do as we were doing and check on it to make sure it stayed within the black lines we had drawn around the site. She was only on one antibiotic and not even the antibiotic I had originally thought she’d be on. They explained that instead of going straight for one of the heaviest ones, they would treat her with the same antibiotic, cefepime, which she had been on for the first infection. I was fine with that because the idea of constantly jumping to the strongest antibiotic seems a tad scary and crazy to me.
Then that night, I kept an eye on her closely. Erik left again because we still had not been transferred to a bigger room so there was only a chair that folds to a glorified cot to sleep on. I wished he could have stayed but I understood him leaving and felt okay because I didn’t think Raven would have two scary nights in a row. Around 9-10 ish, I noticed Raven was feeling pretty warm. I called in her nurse who took her temperature. It was fine. For some reason though, she kept feeling hot so I kept asking for the nurse to come in and check. Two times, her temperature went up to around the 99.5 to 99.8 neighborhood which made me a little nervous. We agreed to keep a look out just to make sure she didn’t spike a fever which she didn’t, so I was happy.
Yesterday was a little crazy. When I woke up, I called my mom to see if she’d come keep us company. She brought over breakfast and after we ate, we changed Raven’s diaper. The nurse was in the room so we all took a look at the infection site. We were all excited to see it hadn’t spread at all but had actually seemed to go down more. It also didn’t seem as red. Even still, Raven seemed to be feeling as bad as she had been the previous days. We’ve been giving her morphine for the pain but she is so itchy so we’ve also been giving her benadryl. That seemed to not be strong enough to control the itching so we asked to switch to something else. The doctor decided to try atarax which is much like benadryl. That also didn’t seem to be enough, but we were stuck without options so we continue to just switch back and forth and try to comfort or distract her when we can so she won’t be so miserable.
Around mid-afternoon, Erik tried to sit her up to see how she’d do. She actually managed to sit up for a while, which was the first time she had done so in almost two days. It was cute to see her trying so hard to make cute faces and play with us. It definitely lifted my spirits a bit but after a while, I could tell she had had enough. I laid her down to rest and went out to do some very last minute Christmas shopping.
While I was out, I got a call from Amy who is the executive director of the Down Syndrome Association of Central Florida. We have been communicating back and forth for the last few weeks about this family who wanted to adopt us for Christmas. When she first called me to tell me and to ask me what we needed/wanted, I was a little dumbstruck. I have always had a hard time telling other people what I want for Christmas, that is unless those people are my husband or my mom. I told her Raven always needed clothes and told her about some of Raven’s favorite things. She asked about Erik and I and the only thing I could think of was maternity clothes, books and video games. I honestly wasn’t expecting anyone to adopt us for Christmas and was beside myself that people are out there who want to help us out like that. I definitely was not expecting the outpouring of love we received from them. They even wanted to do Christmas dinner for us! How amazing is that? And such a big relief that my whole family would be able to just get together and not have to worry about anything. Of course we hadn’t planned on spending Christmas dinner in the hospital, but some things can’t be planned.
When Amy said she’d be by around 4:30 with gifts and food, I was expecting just a few things. I had no idea what a huge surprise we were in for. It literally took her and three of her kids to deliver everything. She had a whole, huge turkey with green beans, carrots, mashed potatoes, gravy, stuffing and rolls for us and two huge industrial sized black trash bags filled with gifts along with a card from the amazing family who did this for us. I was beside myself. We opened the card and I was speechless. They definitely went well above and beyond. I can’t tell you how grateful I am for them doing that for us. To say thank you does not seem like enough. I definitely look forward to the day when Erik, Raven and I can meet them and hug them and say how much we appreciate them. Absolutely amazing.
Our dinner was outstanding. I honestly think the turkey was the best turkey I’ve ever tasted in my whole life. We had originally planned to have Christmas dinner on Christmas day but since Amy had to pick everything up on Christmas Eve, I wanted to make it simpler for her and just do dinner that same day. We called Erik’s Aunt Connie, his brother, and his Grandma to come over to eat with us. Unfortunately, they couldn’t all be there but we still had fun and we all ate a lot.
I kept wishing we could have been in a bigger room because it was definitely a tight squeeze with all the presents, food and company. I think I must have asked a handful of times about moving but kept being told the possibility was unlikely. I decided to prepare myself to spend more time in our small room and just move on. After all, we had decorated and made do so far so what was one more cramped day?
Around 11pm, I started to notice Raven getting hot again. I called in our nurse who came in to check her temperature. He did it a few times, once under the left arm and once under the right. Both times picked up an elevated temperature but not exactly a fever. Then about half an hour later, he took it again and this time it had spiked to 101.1- definitely a fever. I was pretty bummed because I didn’t want anything else to be wrong but he reassured us it was probably just Raven’s body doing exactly what it should by fighting the infection. He told us that often times, infections create temperatures and that the sites of infections tend to look more inflamed and sore before they end up getting better. He also told us that her white blood cell count was up and so was her ANC which was a good thing. We also gave her another dose of morphine to help her sleep more comfortably and we chatted a little bit before he left. I don’t know how it got brought up, but I mentioned again that I’d like to have a bigger room for Christmas. He told us that the bigger room we had stayed in for the majority of the time we’ve been in and out of the hospital had just opened up and that it needed to be cleaned but that as long as nobody else needed it before it was cleaned, we could have it. I was so excited I think I actually screamed a little. I tried not to get my hopes up but couldn’t help it. I’m telling you, it’s the little things now that mean so much. Like moving five doors down to a bigger space. I actually calculated that we have spent 28 days here already. 28 days. That’s not including our two trips home. That’s just nights and days we’ve actually spent just here. So a bigger room means a lot. Especially when we have a big family who wants to be around to support us. Still, I tried to keep myself from getting too excited because the nurse did mention that there were three kids in the emergency room and should one of them need the room, we’d be out of luck. I finally stopped waiting around for him to come back in and around 12:30 am, I went to sleep.
At 2am, I was woken up to him telling us the room was ready and we could move in. I woke Erik up to help me and I’m telling you it was a Christmas gift all in its own. We moved our stuff and settled down for the night.
This morning my family came with breakfast and gifts for Raven. We had bagels and I decided to try and hold Raven. I changed her diaper and noticed that infection seemed much worse than it had the day before. I picked her up and sort of frantically called in her nurse to take a look. She agreed with me about the infection looking worse and she called the doctor. She came back to tell us that he’d be in to look at it and decide what to do.
When he came in, he looked at the infection and agreed that it did look worse but confirmed what the nurse said about the white blood cells doing their job and fighting the infection. He confirmed that often times fever and inflammation can be a “good” thing because it means the body is doing its job. Although I am no fan of fever or inflammation, I took this information and decided to relax. He told us that he would add another antibiotic to be safe that would work in conjunction with the cefepime to fight the infection. Then he left.
We finished breakfast and opened up gifts. We were literally opening gifts for around an hour when we decided to stop and wait for later to open more. I’m not kidding when I say Raven got everything she could have ever dreamed about for Christmas. And it was really cute to watch her clap and be excited about everything she saw. I think she may actually have a few favorites already.
When my family left, we had some nice down time to just read, relax and enjoy each others company. Then this evening, Erik’s side of the family showed up and we had a great time playing with Raven, opening more gifts and just talking. We are so blessed to have a lot of family here to be with us. We have a lot of family who are out of town who we’d love to see more often and wish we could’ve had Christmas with this year, but to have this support here is very nice.
Erik and I are not sure what comes next for us in the next few days. I’m pretty sure it consists of just watching the infection to see how it reacts to the antibiotics and make sure its going down. After it goes down, she will pick back up where she left off with the end of induction. Then we get a small week long break and it’s back for round 2 of this process.
Raven's Journey 