This past month has been a rollercoaster ride for Harper. We took Harper to our local ER on November 30th because she was having a hard time breathing. She was immediately transferred to the hospital where she would be having heart surgery. The doctors put her on hi-flow and we settled in for the night.
Early that Saturday morning, Harper woke up and started to get fussy, which led her to have a hard time breathing. She was so worked up that her left lung collapsed and her O2 sats were down in the teens. The doctor had to bag her a few times to keep air flowing. They ended up putting her on bi-pap which opened her lung back up and she became stable. The following week, Harper began developing random fevers throughout the day. The doctors ran different tests and everything came back negative/normal. Since we were already at the hospital, the doctors decided it was best if they tried to get her on the schedule for her open heart surgery. They thought it was pointless to send us home only for us to have to come back after the new year for surgery. The surgeon has a pretty busy schedule so it was only a matter of finding a day to squeeze Harper in.
On December 8th, Harper began running a fever of 106. For a 12-hour period of time, she never got below 104. By 5:00 that evening, Harper was restless and agitated from not getting any sleep and fighting a fever all day. She began to get worked up again and started to have a hard time breathing, therefore, the doctors decided it was best to intubate her.
Over the next couple of days, her fever broke and she seemed a lot calmer. The doctors were able to extubate her on Tuesday, the 11th, and put her on hi-flow. But of course, by that night, she began running a fever again and she started to get worked up so they had to put her on bi-pap. Moving into the weekend, the doctors were finally able to figure out a medicine regimen to keep her calm and she started to act like her normal self again.
Friday, December 14th, Harper’s team of doctors had a meeting to decide on a game plan. They concluded that since all of the labs and cultures are negative for infection, her fevers are central related because her body is under so much stress. They also decided that instead of doing open heart surgery, they are just going to do a heart catheter and plug the PDA and possibly the ASD. The doctors are hopeful that by doing the heart cath, it will keep Harper from undergoing open heart surgery because the rest of the holes should close up on their own.
The heart catheter is scheduled for tomorrow. If you would like to stay up-to-date, please follow Harper’s Facebook page.
As far as Harper’s weight, feeding schedule, and milestones, nothing has changed from last month. She has been getting IV fluids for the past 2.5 weeks and she hasn’t been able to see OT/PT a whole lot due to being intubated and being uncomfortable. Hopefully, when we get discharged from the hospital, we will be able to get back to our normal schedule.