Last Christmas, we celebrated at Mount Washington. This Christmas, we were fortunate to spend most of it with family and enjoyed opening presents Christmas morning, but the last few hours were spent at the JHH ER.
Abby’s secretions had increased on Christmas Eve, and we were keeping an eye on them. Nothing major, so we weren’t worried. Christmas morning, we had to suction her five times between 6:30 a.m. and 8:00 a.m. For Abby, that is a lot. We normally only suction three times a day! Although we had planned for the whole family to attend church (we had just one service, so we could drive together), I decided that it would be too hard to bring Abby in and out for suctioning. Matt dropped Abby and me off to hang out at my parents’ house (where we were going after church anyway).
Abby continued to need frequent suctioning throughout the day, and it was obvious that she just wasn’t feeling well. I lost count at the number of times we suctioned somewhere around 16, which is more than we have ever done! During her evening feed while we were all eating dinner, I was giving Abby a little taste of solid foods when she vomited. I wasn’t overly concerned because she didn’t like what I was giving her to taste, so I figured it was a spite thing…she does that, you know! It became pretty obvious that she was truly sick when she vomited three more times in the next half an hour. She was also feeling pretty warm. At that point, we called the pulminologist on call at the hospital, since we were pretty sure she had an infection of some sort.
The pulminologist was paged and while we waited for her to call back, I counted out Abby’s respiratory rate and took an oxygen saturation levels read (with her pulse oximeter). Her respiratory rate was 78 at rest (her average is in the 40s), and her saturation levels were 92% (she is usually right around 99 or 100%!) Her heart rate was also very fast at 176 (usually around 130 while awake and 100 while asleep).
When the pulminologist called back, she at first wanted to see if Abby could be maintained at home and then seen by her pediatrician the next morning. However, when I gave her the rate statistics I had collected, she said that we needed to go to our local ER. We told her we would feel more comfortable just going directly to JHH, so she said she would call ahead to let them know we were coming.
Poor Abby was absolutely miserable, although she managed to sleep during the ride there. When we woke her up to go into the hospital, she was quite possibly the saddest little girl I have ever seen. Her cheeks were bright red, her eyes were red and puffy, and she was burning up. Plus, she managed to vomit two more times while I was holding her in the ER. :(
They ran a bunch of tests on her, including flu and RSV—both of which came back negative. They took some blood to run additional tests, and even used a catheter to get a urine sample. THAT was fun! If that’s not potty training motivation, I don’t know what is! She was started on an IV, which the tech managed to get on the first try, although she did have to draw blood from a different site because the vein wouldn’t bleed. They also did a blood gas test, which they were thankfully able to do from her line. That’s one miserable test!!
In the ER, the doctors were tossing around the idea of Abby going to the PICU because of her respiratory rate and the amount of suctioning that was needed. This made me nervous because it seemed like it must be really serious for them to consider the PICU. Thankfully, she settled down enough overnight to be able to go to the Intermediate Care Unit, which is where we have always been.
Unfortunately, there was not a bed available in the IMC. Because of her trach/vent, she has to go either there or the PICU, so going to the regular pediatric floor wasn’t an option. So, in the ER we stayed for the night! Let me tell you, there’s not a lot of sleeping going on in the ER! Most people don’t stay all night, I suppose, so I guess they thought 3 a.m. would be a good time to buff the floors with the super-loud buffer. Plus, there were lots of screaming kids who didn’t like getting IVs and blood drawn. Poor Abby slept quite fitfully all night and cried whenever she woke up.
We were thankful to get up to the IMC around 10 a.m. on the 26th. We know a lot of the nurses there and they are very knowledgeable about trachs and vents. The pulminology team saw her around 8:30 a.m. on the 27th and decided she’d be fine to go home “in a few hours.” Translated in hospital time, that meant that we left there at 3:30!!! We got the initial discharge papers at 2:30, but some of the stuff wasn’t specific enough for home care. By the time they redid it and we got the prescription filled (there were insurance issues…shocker!), we didn’t leave until 3:30. Ahhhh, hospital time!
Once again, we are thankful to RMH for being our home away from home! We slept there on the 26th and were able to get a bit of rest after a long night/day. They are so sweet to us!
At this point, we are still waiting for the trach culture and blood work to come back. Hopefully, the point of infection will be identified so that the best antibiotic can be used. They initially wanted to keep Abby in the hospital until they knew what the infection was, but then decided that she was feeling so much better that she would be fine to go home. Right now, Abby is being given a broad-range IV antibiotic to hopefully kill whatever infection it is. They’ll change if needed when the results come back.
Abby will also be going back on the Tobi nebulizer, which is that crazy antibiotic she was on at the beginning of December...remember, the one that is toxic for us??? Yeah, well...she's doing another round! Then, she'll begin a schedule of a month on and a month off....indefinitely. We're going to be very well aquainted with the Tobi around here. Gas masks, anyone??
We got home around 5:45 after stopping at RMH to grab our things and pack up, as well as pick up Caleb from my sister’s house. A nurse met us there to do an in-take assessment, which is something that has to be done every time she goes into the hospital before nursing can resume. It can only be done by specifically-trained RNs, which makes it rather difficult at times…it’s one of those things that has to be done, but they have trouble finding people who can come. Last night was one of those times, and there was a possibility that we wouldn’t have night nursing. Thankfully, someone was able to come and it all worked out.
Abby slept well last night and seems to be feeling much better now. She’s still sleeping as I type this, so I think she’s happy to be back in her own quiet bedroom without the crying babies!
For those of you who knew, thank you for your prayers! I’m sorry that I’m just now writing the details about what happened. I didn’t have my laptop until the evening of the 26th, I don’t blog while Abby is awake, and I was way too tired to blog by the time we got back to RMH that night! This is literally the first chance I had to write.
Next year, I will not be writing any posts about how I’m excited to be home on Christmas. That was definitely not a good idea on my part!!