Saturday, September 7, 2013
Well it has been a roller coaster 10 days. Many of these details I posted about on Facebook, but I decided to write it all out so that I could reflect on God's goodness. If you enjoy details continue reading, if not then the important thing is that Jaelynn is doing great and should be going home soon.
Jaelynn was admitted to St. Joseph's Children's Hospital in Tampa last Wednesday for a two part (anterior and posterior) surgery for severe scoliosis. The first surgery on Wednesday went great. She did fine with anesthesia and the doctor was able to accomplish what he hoped for that day. A chest x-ray that afternoon after surgery showed that she had developed a pneumothorax (the collection of air in the space around the lungs. This buildup of air puts pressure on the lung, so it cannot expand as much as it normally does when you take a breath). It was most likely caused by the placement of the central line that was placed during surgery. The plan was to keep an eye on it and if it didn't resolve itself they would treat it on Friday when she was scheduled for the second part of scoliosis surgery. On Thursday night Jaelynn's heart rate kept increasing. It went as high as the 180's (normal for her age is like 100-135). She did not have a fever which can often cause an increase. Another measurement that was off for Jaelynn was her CVP (central venous pressure) which as I understand it is a direct measurement of the blood pressure in the right atrium and vena cava. This was measured through the central line that was placed Jaelynn's jugular. The number that we wanted to see is between 3-9, Jaelynn's numbers began to rise with her heart rate and got as high as the 40's. These numbers all pointed to overhydration and heart failure.
Friday morning arrived and several doctors were in and out of the room deciding whether or not it was safe for her to have surgery. They consulted with a cardiologist who ordered an echocardiogram. No one had to say a word we could tell by the the expression on the faces in the room that something was very wrong. The right side of Jaelynn's heart was not functioning and she was experiencing heart failure. We now wondered how long this had been going on, because she has never had any symptoms of any heart or lung issues. The doctors knew after seeing this echo that surgery would not happen that day. The cardiologist ordered all fluids to be stopped and she was put on lasix to help reduce the fluids in her body. A repeat of the echo that afternoon showed slight improvement and the echo the next morning showed even more improvement, but the cardiologist wanted to determine if this was an acute event or something that had been going on in Jaelynn's body and we just didn't know it. The surgeon placed a chest tube at her bedside and that resolved the pneumothorax and the cardiolgist decided to do a heart cath on Monday morning. If the results were good then the back surgery could be performed right after that. Praise The Lord, the results of the cath were good and her heart seems to be okay. The cardiologist feels like this was an acute event due to a combination of the pneumothorax and being overhydrated and she said that the heart was recovering well. We had a follow up echo today and will find out if her heart has fully recovered from everything soon.
She was taken from the cath lab to the OR and the doctor made his first incision at noon and finished just before 5 PM. Needless to say Monday was a very long day and a day I do not wish to repeat.
Since the second surgery Jaelynn's heart rate and fluid balance has been a little tricky, but it seems to be controlled well now. She spiked a fever of 103 during the night last night, but a little Tylenol helped with that.
Today Jaelynn was moved from the ICU to a regular room. The room is much more comfortable and it has a bathroom I can use, YAY. Now again this afternoon she spiked a fever of 104. Someone will be in shortly to check it again, and I'm praying it has come down. You'd never know she had a fever by the way she is acting, she has been very pleasant all day. I think she is excited about the possibility of going home soon since she has met all the milestones the doctor set for her. She's been sitting up in bed and the chair in the room. For short periods she has even sat in her wheelchair, which is a little bit more painful. She is also eating well.
Looking back on the events of the last 10 days, I am very thankful for so many things. I am thankful that the doctor in the ICU consulted with a cardiologist and that the cardiologist ordered and echocardiogram of Jaelynn's heart. Had she gone into surgery on Friday when she was experiencing heart failure, the results would be very different than they are now. Needless to say the technician that performed the test as well as the doctors are very thankful too. I am thankful that through every rough spot the doctors here have been wonderful and have explained things to us so well. We've had great nurses, a special shout out to Ashley who went above and beyond being a great nurse. She stayed with Jaelynn during the process of getting her second chest tube when Jaelynn was so scared and promised to protect Jaelynn with her life since David and I had to leave the room. I'm thankful for the results of the surgery. Though Jaelynn's spine curvature is not perfect, it is so much better than before which will help her in so many ways. I'm thankful for the doctors and nurses that we were able to share our adoption story with, it was evident that Jaelynn touched their heart. I'm thankful for everyone that prayed for Jaelynn and our family over the last 11 days, we felt them all.
Woo Hoo, the doctor decided to let Jaelynn come home today. We stopped by my parents house but we've been home now for a few hours and it feels great! We got the results of the latest echo and it showed just a small amount of pleural fluid. We will have a repeat echo in a few days and will also follow up with the spine doctor.
Below is a picture of Jaelynn with Dr Riggs who is one of the doctors in the ICU that treated Jaelynn. The one in the surgeons cap is the general surgeon who assisted the spine surgeon in the first surgery and who placed the chest tubes. We'll post more pictures of the staff that were an important part of Jaelynn's care later.