On Friday morning at 4:30 am Mike and I got up when Maddie woke up to eat. We don’t usually both get up, but this time we did because we both heard her chest rattling. We fed her and then gave her a breathing treatment. It didn’t help. So, being 5 in the morning at that point, we went back and forth trying to decide if we should wait until 9 am for her Pediatrician’s office to open, or take her to the emergency room. We decided emergency room. So, off we went to the UCLA Medical Center in Westwood. It wasn’t busy, so we were brought back into a room right away. The room had 5 other beds in it divided by curtains…so we could hear EVERYTHING about the other patients. One was hit over the head with a baseball bat, one was a homeless man who needed to be deloused…not exactly an ideal place for Maddie. About 8 million doctors came by, some from the ER, some from Pediatrics, some from respiratory services. Despite her labored breathing, Maddie always had a smile for her visitors. She had breathing treatments and x-rays, and a nasal test (for a bunch of viruses) that involved saline and suction that she HATED. It was eventually determined that she could go home. I spoke with her Pediatrician, and she told me to give Maddie two different kinds of breathing treatments, and if they didn’t help, to take her back to the ER. Mike and I cancelled our fun weekend plans and focused on helping our sick little baby.
On Saturday afternoon, Maddie’s breathing was worse. She was really laboring to breathe, pulling each breath with her stomach muscles and flaring her nostrils. We took her back to the ER. It was much busier, so we had to wait for a while before we were called into triage. While in the waiting room, the check-in nurse kept coming over to check on Maddie because she could hear how labored her breathing was. Luckily, one of the nurses who’d cared for Maddie the day before happened to walk by, and he grabbed us and pulled us back into another room with five beds. What a doozy this room was!!! On one side was a guy who’d overdosed on methamphetamine, another was a man with a blood alcohol level of .5. That’s POINT FIVE. I don’t know how he was alive. Both of them were extremely belligerent, with the drunk screaming “DOCTOR” over and over again at the top of his lungs. Funny at first, not so funny the 25th time. The nurses and doctors were laughing it off until his screams scared Maddie and made her cry. Then they strapped that guy to a gurney and put him in a different room.
She saw another ton of doctors and it was quickly decided that she needed to stay at the hospital. The oxygen saturation levels in her blood were low, in the 80’s and 90’s (it should be 100). That’s something she struggled with a lot when she was in the NICU, so it was scary for us to see those numbers dropping once again. The nurses gave her a little oxygen mask, which she absolutely hated to wear, so I laid it on the bed next to her face and that usually worked. She looked so tiny laying on an adult-sized gurney! She was awake for most of the time in the emergency room, smiling at everyone despite her discomfort, but she finally fell asleep right when it was determined that there were no pediatric beds at UCLA Westwood and Maddie would have to be transferred to UCLA’s hospital in Santa Monica. Mike and I weren’t happy about that at first. We know the ins and outs of the Westwood hospital, not to mention a million doctors and nurses there. But the ER Docs and Pediatricians assured us that we would be happy with the transfer. So we sat back and waited for the ambulance to arrive.
In the meantime, we were told that Maddie needed an IV started. She was going to get fluids and such through it. The ER nurses didn’t feel comfortable with their IV-sticking abilities on a small baby, so they called the Pediatric Intensive Care Unit to see if a nurse could come down to stick Maddie. The PICU nurse thought she was going to be placing an IV on an average four month old, not a former preemie who is the size of a six week old. The nurse tried to get a line in, but Maddie was too small and the line bent back on itself. They suggested calling the NICU for a nurse to come down. Mike and I were hoping that it would be a nurse we knew, but then a doctor decided Maddie didn’t need an IV after all. I wish that had been decided BEFORE Maddie had been stuck, but I was glad she didn’t have to be stuck again.
The transfer ambulance arrived at about 9:15 pm. The guys rolled in with a regular gurney and we all kind of chuckled at the idea of Maddie being strapped to something so big. They decided that instead, I would be strapped to the gurney and I would hold Maddie. I don’t really see how that is at all safe, but at that point I just wanted to get to Santa Monica. So I was secured onto the gurney, handed Maddie, and off we went. I made small talk with the ambulance attendant on the drive while I watched Wilshire Blvd go by. I occasionally caught glimpses of Mike following us in his car. Maddie slept through the whole trip.
Once we arrived at the hospital, Maddie was not doing well. She was REALLY struggling to breathe, and her happy demeanor was gone. She was miserable. She cried more in the first two hours after we got to UCLA Santa Monica than I have ever seen her cry in the past 4 1/2 months COMBINED – through everything she’d been through in the NICU, since she’d been home, etc. That’s when Mike and I got even more worried. She was given a bunch of breathing treatments and medications and she eventually fell asleep, tear-stained and worn out from the stress of breathing and crying. Our poor sweet baby.
Maddie is in the Pediatric unit at the hospital. She has her own room, which is really nice (she wouldn’t have had her own room in Westwood), and she isn’t in intensive care. Unlike the NICU, there always has to be a parent with her. She doesn’t have a nurse only a few steps away, but rather out in the Nurses’ Station. They keep track of her vital signs out there, so if her blood oxygen levels drop or her heart rate gets too high, a nurse will come in the room. Otherwise, a lot of her care is left up to us. If an alarm goes off, one of us has to fix the problem. And alarms go off a lot. It’s nice to be able to take care of her, but it’s very stressful trying to juggle one of us always being with her. My parents came down yesterday to help us, and my mom stayed there with me last night. There is a long window bench that someone can lay on, and the nurses brought in a chair that can lay flat and double as a bed. Neither are the most comfortable options in the world, but at least there are options.
So, as it stands now, they are treating her as if she has bronchiolitis, which is an infection in the tiny airways in her lungs. Maddie is getting two different breathing treatments every two hours, pulmicort and xopenex. She is taking an oral steroid called Prednisolone. She’s also taking her usual assortment of supplements and other medicines like Pepcid. Most importantly, she’s on oxygen, so she has a nasal cannula taped to her face. She hates it and has already pulled it off twice. The nurses and doctors have talked about switching her to an oxygen mist tent, but I hope that doesn’t happen because it sounds like a hassle. She sleeps most of the day, which is a big change from how she’s been lately. Hopefully it’s helping.
There isn’t a set day yet for her to be discharged. Her pediatrician said she needs to maintain her oxygen levels above 95 WITHOUT the aid of oxygen. So, she needs to be off oxygen first. She will most likely go home on the oral steroid, and I have a feeling the breathing treatments will be more frequent as well.
We’re hanging in there. I just can’t believe she’s back in the hospital.