Saturday, June 18 – Yesterday our daughter had Open Heart Surgery. She was born with a congenital heart defect called a Ventricular Septal Defect (VSD), which is essentially a hole in the ventricular septum dividing the left and right ventricles of the heart.
For the past two and a half years, with trips up to the Milwaukee Children’s Hospital, her doctor has monitored her heart to see if the VSD would close over time on its own. While it did close up somewhat in her first year, for the past year there has been little or no progress and we made the decision to have this corrected sooner rather than later.
While she was in no immediate danger, and has been suffering no apparent side effects, over time the abnormality in her heart would have put excess pressure on her heart and lungs, creating long term health problems for her and most likely shortening her life.
Before her surgery we were informed that there was an additional muscle bundle that had formed on her heart, as it was adapting to make up for the irregularity, that would be removed as well as the fact that she had another small hole in her heart, an Atrial Septal Defect (ASD), which would not have normally required surgery, but which they repaired during this procedure as well.
Yesterday’s surgery has gone very well, although the recovery is a little rough for our little girl. While she was able to have her breathing tube removed before coming out of surgery, she still has a chest tube, catheter, multiple IV’s to provide pain medication and fluids, and monitors hooked up to her to check breathing, heart rate and a myriad of other things beyond my comprehension.
A few hours after surgery she began waking up a little at a time, before falling back to sleep. At one point she became very awake and pulled off her oxygen tube, her forehead monitor and actually rolled over and got up onto her hands and knees. This freaked us out as we weren’t sure how much force we could apply to her to get her rolled back over without hurting her or creating problems with her chest incision. Susan and I were stuck for a few moments, holding her still as she looked like a tangled up marionette with all of her tubes and wires.
The nurses were able to get her resettled and she got a fresh dose of pain meds to get her back to sleep and calmed down, and she has been more or less in a twilight since then, although they have added some soft restraints to her arms to prevent her from pulling anything out.
So far she is recovering very well (or at least, according to the plan, which has included her getting sicker before she starts getting better), and while it has been a long night for her, we are optimistic that some of the IV’s and monitoring can be removed today, and that she will be well enough for her brothers to visit.
She will need to stay in the hospital for at least another three days, and she is expected to have about a six week recovery period before her sternum (which had to be split) is fully healed, but after that she should be fine with no side effects going forward and only a small scar as a reminder.
I have posted some pictures of her on the Photos page. I will be adding to these occasionally during our hospital stay.
UPDATE: Sunday, 9:40am – We have been informed that they will be moving our daughter up to another floor later today as she no longer needs to be in the Intensive Care Unit, and tomorrow she can go home. Happy Father’s Day, indeed! Added photos to thePhoto Page.
UPDATE: Sunday, 10:25pm – Our little girl had a great day. She was awake for much more of the day than the past couple of days, only taking one nap this afternoon. There were a couple of times were she just laid down and rested, but no other naps. She has a lot more energy and personality back. Her cousins visited today and gave her a new toy which the video here shows her thoroughly enjoying. Also added more photos to the Photo Page.
UPDATE: Tuesday, 7:31am – We are finally home after a long last day at the hospital. We were told early Monday that there would be a check of her vital signs around 6:30 and then she would go down for a post-procedure Echocardiogram before being discharged, which they were hoping to do around 9am. Unfortunately they had an emergency case come into the hospital that took the staff away for much of the morning, so we were not finally discharged until 2:30 in the afternoon.
In some ways this last day was one of the roughest for our little girl. She didn’t like one of the medicines she had to take orally, and every time someone would come in the room she would cry “no more medicine” even if they were just there to check vitals or for some other function. Then we had to start removing more tape and other things stuck to her, and this hurt a bit as a lot of the tape had been on her for a few days and her skin can be sensitive.
Having to wait the extra time didn’t help her mood, but the medical team finally got to her to give her a once over and declared her ready to go. Almost exactly 72 hours after leaving surgery, she left the hospital, and we are now all happy to be home. One last batch of photos on the Photo Page.
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