Even before completing the last update about Julie, we received a phone from the NICU. My brother Peter had this posted on FB…
Sarah just called. It won’t be a straight line with Julie. Since the 16th, she started more fluid/swelling, and they are preparing to insert a catheter near her heart to reduce it. Also, she will be going back on more aggressive breathing support equipment, allowing her lungs to rest and develop. Your continued prayers are requested and appreciated. Andrew has been exhausted and not provided an update and she asked that I alert y’all on FB.
The NICU doctors made the decision to insert a catheter overnight and called us around 9 am. They didn’t seem to be in a hurry so we said we would be in around noon. We were concerned about the procedure since it didn’t seem to really address the heart of the problem, but merely treated symptoms.
Sometime around 10 am, they changed their mind and decided to schedule a full operation. Julie’s condition had worsen since the night before and they felt the need to remove the CCAM. They called us and confirmed that we would be coming in that day so that they would be free to operate on Monday or Tuesday of the next week. We were delighted to hear of the operation since we knew that removal of the CCAM would mean Julie would recover and leave the NICU sooner. Now, we were excited about the prospects for the day.
I sent out this quick update when we got home that night…
Just a quick note to say that Julie had major surgery this evening.
The cyst was completely removed.
She is doing very well, but because of the intensity of the procedure, she has some things to overcome.
Praise God for a successful surgery. Pray for continued healing.
I’ll get out a more complete email tomorrow,
Andy and Sarah Horn
I recap the details of Friday on my Saturday update…
I just called into the hospital for an update. Julie is stable. They have been able to turn down the settings on the oscillator breathing machine (O2, pressure and frequency). She is still sedated from surgery and will remain out of it for a day or so after surgery.
Yesterday was a remarkable day. Everything moved so fast that we didn’t have time to eat. We started with the bad news that I shared in my Day 12 Update. I called into work and took the next few days off. Sarah and I were initially planning to come to the hospital in the evening, but decided to come early when we were told that the doctors were planning to insert a stint into Julie’s leg. The smaller IV lines were insufficient and she was getting stuck everywhere in order to find a good vein. Before we knew it the day progressed from minor to major surgery. Before we reached the hospital, the doctors wanted to remove the CCAM immediately. They needed us to come in ASAP.
By the time we got into her room, it was already being converted into a surgical theater. Julie couldn’t be moved to surgery, so they were moving surgery to her. We spent a couple minutes with Julie, talked with the pediatrician, handed over the latest milk bottles and left. We then moved down the hall to a consulting room and spoke to the surgeon’s assistant and signed papers. There were support people standing in the hall throughout the surgery waiting to go in for their piece of the procedure.
There was no question in either Sarah’s or my minds about the surgery. We were thinking, “Get ‘er done!” and, “Why didn’t we do this earlier?” The surgeon and anesthesiologist were very professional. They do this type of thing every day (twice a day yesterday). The surgeon was selected because they didn’t know what to expect when they opened Julie. He does both heart and lung surgery. He would open her entire chest in order to locate and remove as much as possible of whatever shouldn’t be there.
The anesthesiologist started working on better lines into Julie while we were talking to the surgeon. The surgeon drew some pictures on the white board for us so we would understand what was about to happen. When he left to start the surgery, Sarah and I took turns walking out of the ICU where we could use our cell phones. I lost batteries on my cell phone somewhere along the line.
At the first update from the surgery, it was all over. They got the mass out completely! When the surgeon opened Julie, fluid poured out. She was so swollen (everything was discolored and shifted) that he had a hard time identifying the mass. Then he couldn’t believe the size of it. He removed 20 cc of fluid in order to see around and behind it. He then carefully separated it from the heart, arteries, etc. It was amazing technique. When Sarah and I saw the mass, it was 3 inches long and 1 ½ inches in diameter – sort of like an irregularly shaped sausage – no telling how big it was before he removed the fluid. It was almost the size of her arm. That part of the surgery only took 30 minutes.
Normally, the surgeon closes the patient using the same techniques as a plastic surgeon. Since Julie’s tissues were so saturated, he had to resort to more standard techniques. She has a drainage tube and he will need to remove her sutures in a few days. It took a while for him to close her up and even longer before we were allowed in the room to see Julie.
When we did see her, she had gauze over her body and lots of tubes here and there. Her color was much better and the swelling in her face appeared to have gone down significantly.
Here’s the funny thing – Julie didn’t have a CCAM. Both of her lungs are fully formed! The mass was from the pericardial sack which surrounds the heart. About a quarter to a third of the sack was removed during surgery. No problem according to the surgeon. He uses this tissue to repair blood vessels all the time. I had never heard of that. So, she should recover completely with a “tattoo” and a story.
As you pray, remember these issues: infection, trauma from the surgery, recovery from removal of such a large growth, pain management, and lung functions. Praise God that the mass is out of her!
Andy and Sarah Horn
During the surgery, we were so boisterous that nurses and doctors were peeking inside the room to find out about the party. We just knew that this was the right thing to do and that God would protect Julie. I never had even a moment’s doubt. My confidence helped Sarah get through the situation without any worries.
When they offered to let us see the mass, I immediately said, “Yes!” I wanted to see that nasty thing that cause Julie so much grief and say, “Be gone!”
The thing was so big that the staff cried when they saw it. No one could believe Julie had something so huge in her chest!