During the day on October 31st, our daughter had a busy day. She had two drain tubes removed. Some medications were reduced or stopped, she had a new PICC line inserted and the old one removed. A PICC line is a thin, soft, long catheter that is inserted into a vein in the arm, leg, or neck. The tip of the catheter is positioned in a large vein that carries blood into the heart. The PICC line is used for long-term intravenous (IV) antibiotics, nutrition or medications, and blood draws.
Overall it was a good day with progress being made. There were a couple of times several hours apart that she had an episode of her blood pressure dropping. The nurses were able to increase the fluids they were giving her while also adjusting her meds to get it to come back up. Their thinking was that she was getting rid of too much fluid thru urine output while also losing it through her chest tubes and not enough was being put back in.
It was also discovered during the day on the 31st that she may have a condition called chylothorax. Chylothorax is a rare condition in which lymphatic fluid leaks into the space between the lung and chest wall. When this fluid builds up in the lungs, it can cause a severe cough, chest pain, and difficulty breathing. In our daughter’s case, she had chest tubes placed during her original open heart surgery to help drain some fluid that was expected. Those chest tubes helped to drain the accumulating chylous effusions. This condition was thought to have been caused again by the heart defect and was only discovered once our daughter had been given breast milk through an NG tube. After the discovery of the chylothorax, the feeding of breast milk was stopped and she was placed back on IV nutrition.
Conversation with Another Parent
The pediatric ICU our daughter was staying in had a small kitchen-type room that the families had access to. In the room was a fridge that families could keep food in, an ice and water machine to fill up water bottles, a microwave to heat food, and a sink. Early on in our daughter’s stay in the hospital I had gone to the room to get some water and had a passing conversation with another dad. We talked about our kids and how long they had been in the hospital. Our daughter had been there less than a week and the other dad said his daughter had been there over three weeks. I recall thinking, wow that is a long time, we were told it should only be 10-14 days for our daughter if all goes well.
For Those Keeping Track
For those keeping track, up to this point on October 31st our daughter had several major diagnoses. Below are several links to the conditions if you would like to learn more.
– Supra-cardiac Obstructed Total Anomalous Pulmonary Veinous Return
– Pneumothorax
– Complete Heart Block
– Pulmonary Hypertension
– Chylothorax
Roughest Night in the Hospital
On the night of October 31st after having spent all of our waking hours at the hospital we had seen our daughter endure multiple emergent medical procedures. At around two or three in the morning of November 1st, my wife and I decided to go back to our room at Ronald McDonald House to try and get some sleep. We were running on very minimal sleep, 4-5 hours a night, and we were becoming exhausted. Sometime after returning to our room and having passed out from the days of exhaustion, we woke up to a phone call from one of the nurses who were taking care of our daughter.
When the phone was ringing, I remember looking at it and thinking, what time is it and who is calling me. We were both so fatigued we woke up in a stupor and had that brief moment of confusion as to where we were also. I answered the phone the best I could and it was the nurse at the hospital. She told us that our daughter’s pulmonary hypertension was flaring up and they were trying to get a handle on it. The medications they had decreased in the days prior were increased, she was put on a different type of ventilator and the doctors were working non-stop to bring her pulmonary pressures back down.
My wife and I got up early after only a few hours of sleep and went to the hospital to be with our daughter. We would learn that during the pulmonary hypertension event our daughter had gone into cardiac arrest several times. They were having difficulty controlling her pulmonary hypertension which caused the cardiac arrest. We were also informed that the doctors were very close to putting our daughter on the ECMO (Extracorporeal Membrane Oxygenation) machine. ECMO is used for people with life-threatening heart and lung conditions when all other treatments are not working.
By the grace of God and the work of the doctors, our daughter was saved. The medical staff put her on a drug called Flolan which is used to treat pulmonary hypertension. We would learn in the coming days that our daughter was very reactive to the Flolan IV. When changing out the syringe on the pump they had to be very careful not to give just the slightest amount over or under her prescribed dose or it would impact her. It needed to be kept at a certain temperature and was sensitive to light so it was kept covered by a dark brown plastic baggie.
For the second time in less than a week were confronted with the seriousness of the situation our daughter was fighting through, we nearly lost her again. After the complications just after delivery and her open heart surgery, we were initially hopeful that she would only need to be in the hospital for a couple of weeks before getting to go home.
We were quickly learning that our daughter was going to be in the hospital for longer than initially thought due to the complications she was facing on a nearly daily basis.
The Next Several Days
Our daughter spent the next several days inflated with the fluids she was pumped full of during her rough night. She was so bloated and swollen her torso was twice the size it had been. It would be nearly a week before she started to look like she did prior to her cardiac arrest event. This time was also spent adjusting the medications as she tolerated.