Well, this is not the typical 10-month update post I had hoped for. Poor Miss Margo scared us all and we spent four days last week in the children’s hospital with her. She is doing so much better now. She is crawling, playing, eating – almost totally back to her old self. Thanks to our family who stepped in to help, our friends who called and texted us like crazy, and our coworkers who picked up the pieces for us at work and also offered to help in any way. I have to thank our wonderful Le Bonheur family too. I used to work there, and all my former coworkers rushed in to make our hospital stay so much more comfortable! How blessed our family is!
Two weeks ago, M got an ear infection. We took her to the pediatrician, and he wrote her a prescription for amoxicillin. She took the medicine as prescribed and on day 7 (Monday, 8/4), starting getting a red rash in a couple places, mainly on her belly. On day 8 (Tuesday, 8/5), I took her to back to the doctor because the rash looked strange. It looked different from the normal hives and penicillin rash P used to get when he would take it. Side note – P would get a small rash, with tiny bumps when he took penicillin, but it didn’t bother him and it was gone in a couple days. For M, I thought better safe than sorry.
When we got to the doctor, she had a few more spots of hives/flared skin. The doctor said it was probably just a normal sensitivity to the penicillin. He said to stop taking it immediately, and give her an antihistamine every 4 hours. We followed instructions, but as the hours went on, she was getting worse and worse. I took her back AGAIN on Tuesday, later in the day, because she started swelling. The swelling made me nervous, but the doctor said it was probably at its peak and should start getting better on the antihistamine.
She moaned and groaned through the night in her crib and started to itch. The rash spread and the swelling got worse. By Wednesday afternoon (8/6), she was very sick. Something in my mom brain was telling me that this wasn’t just a normal reaction. If she was taking antihistamines every 4 hours, why was this getting worse and not better? We went to my mom and dad’s house to celebrate my brother’s birthday. When we showed up, everyone was shocked by how she looked. My sister-in-law is a nurse practitioner and I really trust her opinion. She looked at her and said “you need to call your doctor back. Her hands and feet are purple.” I called the doctor back, and when I explained the symptoms, he said we needed to go directly to the ER.
Brian was out of town on business, so after debating about an hour about whether or not to go to the ER, we finally decided to just do it. Mainly because I didn’t want a 2 a.m. emergency and Brian is out of town, with no one to care for P at 2 a.m. So, my mom and I got in the car with her and went.
We were driving from Cordova/Lakeland area to downtown Memphis, which is a bit of a haul. In the car ride there, Margo started looking really bad and her eyes looked lethargic and dreamy. I had not really been around a baby that sick, let alone my own child. She was so uncomfortable, she starting ripping out chunks of hair and pulling at her skin and clothes. The itch had gotten to an unbearable point for her.
When we got to the ER, they called us back pretty quickly. The nurse asked me “Has she had any fever?” I said “No. On Monday, it was 100.4 and Tuesday it was 99.1.” And the nurse said “Okay, well it is 104.7 right now.” I felt terrible! I didn’t even know! Then, they took her back right away.
We saw the ER doctor and he explained to us that she probably has a true allergy, not just sensitivity, to penicillin. He thought she had something called serum sickness. Here is what she looked like in the ER, after they had given her doses of anti-itch medication, pain medication, steroids, and tylenol.
She doesn’t even look like herself!
Her hands and feet looked terrible. Double their normal size.
Her skin was so red and so hot to the touch.
Margo’s symptoms were:
– high fever
– swelling of the lymph nodes
– vomiting (this didn’t start until we were in the ER and I think this was mostly due to all the drugs they gave her and a lot of them tasted terrible)
– Elevated results in her blood work for inflammation and clotting
– Dehydration – she needed fluids, because of the vomiting and she would not take a bottle. She went half a day without peeing and so we decided to do fluids to be safe
– As part of the sickness/allergy, her blood cells were leaking plasma. The plasma flowed down into her hands and feet, causing the extreme swelling. According to the ER doc, unfortunately, this also causes extreme pain.
Her doctors felt like her case was definitely a more severe one and wanted to keep her at the hospital for a few days. We agreed, since she was just so sick. It was frustrating, because she would start to get better, then get bad again,start to get better, then get bad again. The problem was that she had 7 days worth of the penicillin in her system, so we couldn’t just get a couple shots and knock it out.
There is a lot of this story that I am leaving out, mainly because I am completely okay with trying to FORGET it. Getting the IV in was the worst of it. How we got about 5 hours sleep TOTAL from Tuesday to Saturday. How Brian was out of town, but came back as soon as he could on Thursday. How she wouldn’t let me put her down for days and days because she was scared she was going to get hurt/pricked/messed with if she laid down (this included all.through.the.night). I can’t say enough great things about our care and the team at Le Bonheur. I love that place, and if your child is ever in trouble, PLEASE GO THERE. They are the pediatric experts and knew how to care for my 10-month-old. They knew so many tricks to get her to take her medicines, comfort techniques, patience, etc. They came right away anytime we called and they explained things well to us. Speaking of the IV, they used the tiniest needle available and I was so thankful for that. Can you imagine if we had just gone to any ER?
Going for a walk around the hospital once she started to feel a bit better…
We were finally discharged Saturday, (8/9) and sent home on a variety of medicines. We are following up next week with a pediatric allergist to figure out what to do next. Penicillin is pretty easy to stay away from, but Brian and I are hesitant to give her anything new after this experience.
Today, she still has a slight rash, but is doing so much better. It was quite a scary experience and we are so glad to be home and attempting to get back to our normal routine. Now my focus is on P, who is having a little bit of difficulty at home over all this. I think it scared him too and he didn’t like having us gone to be with Margo for several days. He fell apart when we got home on Saturday and has been having trouble getting it together since. Poor little guy! Last night, we each spent half an hour alone with him, and it seemed to help so we’ll keep trying. Hospitalizations really impact EVERYONE around you, don’t they? And (full disclosure here) I’ve been having a lot of trouble too. I keep replaying all of this and cry daily about it. I know she is fine and it could have been worse and all, but I think I am a bit traumatized too. My sweet friend dropped off dinner yesterday and I almost burst into tears on my doorstep. So, I did what every young mom does and called my mom and cried to her for an hour. 🙂 My mom mentioned how much my entire disposition and outlook changed when Brian finally got to the hospital, and I think not having him there through the hardest moments is what is bothering me the most. Hoping to get back on track with our family soon, but so thankful Margo is on the mend.
The Brierfields 