Feeling better and waiting to go home
Its been a scary few days. Scary enough to land us in the ER and back in the same place we were exactly a year ago. I've found myself reliving a lot of things, but also looking at things with whole new eyes. I've reconfirmed that there is nothing quite like mama's intuition.
It all started on Tuesday. When I dropped her off at daycare, she looked funny to me. Her eyes were a little puffy. This freaked me out a bit because a fellow heart mom had just landed back at the hospital and one of her son's symptoms were puffy eyes. I mentioned it to her daycare providers. Well, it turned out my mama's intuition was spot on. Around 10AM, I got a call from daycare that she had a fever of 101. I had to see two more classes, so I went down and picked her up and brought her back to my room. It was clear she was feeling pretty lousy, but she was so patient and good as she waited for me to take her home. The kids were so excited to see her and wanted to hold her, but I told them it was better they didn't. During the second class, she fell asleep in my arms while I was teaching. On my way home I called the pediatrician and the nurse told me to give her some Tylenol / Motrin and see if the fever responded to it and if so, that was a good sign. It did, so over the next 24 hours we continued to monitor her. Both of us were worried and got up several times through the night to check on her.
I had to make the difficult decision as to whether or not I should stay home on Wednesday or if we should have Chris' mom come up. It is the end of the quarter at school and I have so much to do at work, but she comes first. I wasn't confident I knew what to look for and didn't want to put that burden on Chris' mom. Mama's intuition told me I should stay home and boy was it right. I knew I wouldn't forgive myself if she got worse. By 4AM Wednesday, I knew I had made the right decision. She spiked a fever of 102.5. I gave her some Motrin and got her back to sleep, and she slept until 9:30. By morning, she seemed almost better. She wanted to eat and play, but these things wore her out and she went back to bed for 3 hours. She woke up in the middle of this nap and played in her crib for a bit, which seemed like a good sign. When she woke up again, she was screaming and burning up. I gave her more Motrin and called the pediatrician. We decided I would come in in the morning if she wasn't better. 45 minutes later and she wasn't responding to the Motrin, so I called the pediatrician back and asked to come in that afternoon. They told me to come in at 4:30 which was about an hour and half from when I called and wasn't with her normal pediatrician. By the time I got there, her temp was up to 103, her heart rate was 170, and we couldn't get the pulse oximeter to work, but it was reading 90% (we learned later this wasn't a true reading, but it made the situation much scarier). Her O2 levels are usually 99-100% and when you're dealing with a cardiac patient, any time O2 levels dip below normal it is could be an indication that something isn't right. Getting a pulse ox reading was my big reason for wanting to go to the pediatrician. Anyway, she seemed worried and I had the sense that it was time to go to Children's. I asked her if that is what she thought I should do and she agreed. She took a look at Hope's breathing and assured me she wasn't in respiratory distress, so I had time, but I should go right away, which looking back on, is pretty scary. I considered going home and grabbing a couple things in case we were to be admitted, but we were already 10 minutes closer to the hospital. So we got in the car and headed right into Boston. At rush hour.
Since she was born, I have always said if she ever needed to go to the ER, it would most certainly be Children's, no matter what time of day. Anyone who cares for her knows that if something happens to her, that is where she is to go. So I didn't care it was rush hour. I got in the car and on my way there called Chris and told him he should email her cardiologist, who wrote right back and told us he would also let them know we were coming. On the way there, it was clear that Hope was declining. I didn't hit much traffic until I got about a mile away from the hospital and then it was standstill. I was really scared, and calling an ambulance crossed my mind.
When we finally got there, it was clear I had made the right decision to take her into Boston. They were waiting for us. I gave them our last name at check in and they said "Hope?" and within 2 minutes we were being taken back to a room. Every time I have ever been to an ER, I have been taken to a room and waited for a while. Not so this time. We had a team of 6 on us immediately, including a cardiologist. They were not messing around. By the time we got there, she had a fever of 104, her heartrate was over 200bpm, she was lethargic and clearly in bad shape. They put in an iv, administered fluids, gave her Tylenol and Motrin, did a chest x-ray, took blood, took a urine sample, and told us were going to kept overnight for fluids and observation. They kept us down in the ER for several hours until her heart rate got stable enough to move us up to the 8th floor, the cardiac impatient unit.
The next 12 hours she was in and out of her fever, but by late afternoon yesterday, she was clearly feeling better. Unfortunately, this was just a little too late for them to feel comfortable discharging us. So we got to spend another night. As disappointed as I was in not going home last night, I'm happy she got some more fluids and that we'll be taking her home nice and hydrated. Her heart rate is still high, but much better and her fever is low. It would have been better for both of us to sleep in our own beds, but at least now we can take her home confidently. Hope is clearly done with sleeping here. She was awakened at 4 for vitals and then pitched a fit for the next hour. Nothing I could do would settle her down and she definitely didn't want to be put back in the crib. She had an IV, which didn't quite stretch to the chair bed, not without putting the crib side down, which I couldn't do without putting her down because it was on the other side of the crib and the IV didn't stretch. So I stood for a while until I managed to calm her enough just to put the side down and sit down. We have a roommate, so this was pretty stressful. She woke up this morning hungry but very tired and was only awake for about an hour. She has been sleeping again for over an hour.
I'm sitting here right now waiting to be discharged. They told me about an hour ago that they would get her paperwork going and get us home. These things take awhile in the hospital, so I don't really expect to be home before noon.
It has been really weird being back here on the same floor we basically lived on for 6 weeks this time last year. I was definitely relieved when they said they were admitting us to cardiology. I knew that meant we were coming up to 8E and it wouldn't be completely foreign. Since we've been up here, in addition to being in familiar surroundings, there have been plenty of familiar faces. Nurses and staff who told us they remembered us. Today, the nurse who is caring for our roommate was very excited to tell me that we were one of her first patients when she started here a year ago. The attending doctor is the same doctor who made the final call on her not being sent home to grow last year, which while we hated his decision, it was the right one. Our cardiologist has been in to see us a couple times, just to check in. We didn't get to have any of our favorite nurses, or even see them, but nonetheless, it is really good to be surrounded by familiarity.
This whole experience has been one of deja vu, but like I said, after a year's experience in being a heart mom, I have looked upon it with whole new eyes. I am more confident and more comfortable speaking up. Yesterday at rounds, instead of feeling like I had no idea what was going on like I did last year, I clearly knew more than the med student making the rounds. I was able to participate, speak up, and fill in the gaps in her history. They were happy to have me there. As I walk around the hospital, I know where I'm going, I know what to do and there has been nothing foreign to me. We quickly settled into our old routine of Chris coming in after rush hour and letting me go home for a couple of hours to hang out with Sanders, run, shower, and get some stuff for the night and get back before rush hour. As much as it sucks being in the hospital, I am happy to be here and not somewhere else. Going forward, I am much more confident in dealing with a fever. I know I didn't react and feel like my timing in when I brought her in was pretty good.
Thank you to everyone who has checked in. Her pediatrician has called twice (including at 10:30 Wed night) and has been following along online. Her daycare providers called to check in this morning. Lots of people have emailed, texted, etc. Someone sent us a teddy bear, balloon, and chocolate, but there was no card - we finally found out who it was - thank you. We are so lucky to have so many people who care for her so much.
Unfortunately, we had to postpone her Heartiversary party until Nov 7. I sent an email out yesterday and hope I reached everyone, though I will likely send another reminder tomorrow so that no one shows up. This was a hard decision. We really wanted to have the party and we were all looking forward to it. But we also want Hope to be at her best and enjoy the party. Fortunately, we were able to also postpone the food and Chris' mom was able to postpone the cake. I'm hoping that because we postponed it, even more people will be there to celebrate with us :)
The next post will be of a happier sort and will definitely have more pictures - Hope's first birthday, which was last Saturday!
