Adventure Time- Sunday Afternoon to Tuesday Morning

We left Melbourne around 3:30pm on Sunday and arrived at The Ronald Mcdonald House in St. Petersburg around 6pm. We checked in and went to dinner with some friends, in the area, around 7. We had a pretty uneventful night, got up around 4:15am, and got to the hospital around 5:15.

Ronald Mcdonald House West

After completing registration, we went up to the PICU for some testing. They started an IV, took some blood and nasal swabs, did a chest xray and EKG. This all took about 2 hours and during that time, Lu did great. She did not like the tests but she slept and played in between. We spoke to the anesthesiologist who had, incidentally, had open heart surgery himself as well.

Registration

Waiting to take tests

She loved eating my visitors tag.

What a fashionable gown. She was pretty happy even though she hadn't eaten anything in a while.

Sleeping during the pre-op EKG

After a lot of waiting, the nurse took her away for surgery. She was sleeping when we handed her off so that made it a little easier. It would have broken my heart to see her scared or sad.

My in-laws are here with us but my mom had to stay in Melbourne since my dad is having some medical procedures this week. It is a lot of help to have their support and my mom is being updated through phone and Facebook.

The wait during surgery was easier than I thought it would be. I slept a little bit, we ate lunch, and hung out in the family waiting room. The nurses updated us every time something significant was happening. The time went by pretty quickly and we all knew she was in great hands.

In Lu's open-heart surgery , the surgeon makes a cut in the chest and a heart-lung machine is used to maintain circulation while he closes the hole. The ASD is closed by sewing a patch of pericardium tissue over the defect.  Eventually, the tissue of the heart heals over the patch, and by 6 months after the surgery, the hole will be completely covered with tissue.

After surgery, which lasted about 3 hours, we talked to the surgeon. He actually had to close up 2 large holes in the atrial septum called the ostium secundum and the ostium primum as well as a small PDA, which they tied off. He explained to us that, although the next few days would be intense, children tend to heal much quicker than adults and she will feel better than ever after she has recovered. Because of her ASD, the blood flow in her heart and to her lungs has been very inefficient for her entire life. The holes have prevented the heart from operating correctly and the non-oxygenated blood has mixed with the oxygenated blood which has made her lungs have to work harder as well. Normally the non-oxygenated, or blue, blood in the heart travels from the right side of the heart, through the lungs, turns to oxygenated, or red, blood then travels to the left side of the heart and throughout the body and back. But with most CHDs the red and blue blood gets mixed together and blood and fluid can collect in the lungs and other organs and back and forth between both sides of the heart, causing several problems, as you can probably imagine (see diagram). This has also caused the right side of her heart to be 2-3 times larger than normal and the left side to be 2-3 times smaller. As you can imagine, this has caused every exertion of energy, from eating and playing, to even breathing, to be like running a marathon. But after her repair, the proportions of the right and left sides of her heart were closer to normal and the blood flow was normal.

She was moved to the Cardiovascular Intensive Care Unit (CVICU) around 2pm and we got to see her shortly after. We were prepared, ahead of time, for what we would see but it was still pretty hard to see her hooked up to so many tubes and machines. They sometimes extubate in the operating room but Lu was not breathing well enough on her own, then, so she had a breathing tube (intubation). She also had a chest tube (to drain fluid and blood from her surgical area) and temporary pacing wires, several IVs, a pulse oximeter (to read how much oxygen is in her blood), a catheter, and a few patches and wires that recorded her vitals and O2 stats. She was very swollen, especially on her face so she kind of looked like a different baby. She looked pretty comfortable and would open her eyes for a few seconds here and there and she would grimace and try to cry, which was hard to see, especially since she couldn't make any noises due to the breathing tube in her throat. After she started to wake up a little more, they attached her arms to the bed with arm restraints to prevent her from pulling at the breathing tube. They slowly lowered the level of oxygen going through the tube until she was breathing well on her own. They removed her breathing tube around 9 or 10pm and replaced it with a nasal cannula.

A few hours after surgery

We all left after 10pm since she was still out from the anesthesia and pain meds. I had a severe headache so we chose to get some sleep so we could be able to care for her better when she was more alert. We got a phone call a little after midnight, which scared me pretty bad. The nurse was just letting us know that Lu was having trouble breathing on her own so they gave her a CPAP mask (which is just a mask that forces air in her nose) and tweaked her pain meds. They also inserted a NG tube (Nasogastric tube- a small tube that is inserted through the nostril into her stomach to remove air. It is also used for tube feedings).

Tuesday (Post-op, Day 1):

We got to the hospital in the morning as they were taking the CPAP off, which upset her a lot. Her numbers were good so they are slowly removing things to see how she tolerates it. They have taken out her catheter and NG tube and removed her brain oxygen monitor (a patch on her forehead). She is still receiving morphine but less often. She seems pretty comfortable and is trying to sleep but you can tell she is hungry and wants to roll over onto her side or stomach.

If she continues to do well, they will let us bottle feed her this afternoon, which should make her very happy. Right now, we are just letting he rest and hanging out. I will try to update the blog tomorrow night.

No more breathing tube or CPAP