Sunday is a day of rest… unless you’re in the Cardiac Thoracic Intensive Care Unit (CTICU)! The last 24 hours have been full of incredible highs and lows. Owen is continuing the heart dance and asking us to slow down. Our small but mighty warrior is needing to rest and needing a little extra help.
The CTICU has been at near capacity and the nurses have been spread thin. Our hearts are broken that the 25 bed unit is so full. It just reminds us how many families are affected by congenital heart defects. We watch so many weary families come in in the morning and leave at night. It’s comforting to know we are not alone and devastates us that they are going through it too. The nurses and doctors are all so incredible and it makes our time here a little easier. They make sure we are active in Owen’s care and answer any and all questions that we may have.
Saturday we got the greatest gift since Owen’s birth. At 10 days old he was placed in his mother’s arms… By mother’s arms I mean, fully swaddled, on a pillow, with all tubes and wires connected to my jacket but none the less he was in my arms! It’s hard to find words to explain what the moment was like when they placed him in my arms. I was scared to death that he may be uncomfortable or that one of his lines may have issues. I didn’t want to cause him any pain. I was elated that I finally got to hold him and be his mother. I was overjoyed that I got to do something so natural as holding my baby. In the same breath I was sad that I had to wait 10 days and that my child has been through so much and had never been held. I was sad that when our son was born I did not get to see him till after his surgery. I was upset and scared that he has been fighting for 10 days and he still has a long way to go. I was overcome with so many different emotions and my head was spinning. It took 2 nurses and one respiratory therapist to place him in my arms and when they did all of those emotions swept away. I looked down at our precious miracle and my eyes swelled with tears, I saw my heart in my hands and for the first time in 10 days, we were a family! We got our first family picture, we got our tears of joy together in each others arms, and all that love between the three of us erased all the monitors, nurses, doctors, tubes, and scars.
Saturday night as we left to get some sleep, Jeff noticed Owen was having some spikes in his heart rate. The nurse dismissed it and said that it sometimes happens and it could be an electrolyte imbalance.They told us that they would keep an eye on it and not to worry. By 3:00am the arrhythmias continued and his heart rate had exceeded 260! The doctor checked him and ordered an EKG. The spikes were irregular and so short that they didn’t register on the monitors, so again they said that they would keep an eye on it. By morning rounds the spikes had become more frequent and they decided to look deeper into it. The respiratory therapist also had some concerns with Owen’s breathing. He was struggling during his morning “workout” and his PH was very low. Additionally, an X-ray showed that he has some fluid in his right lung. They decided that he needed a 24 hour rest from the breathing exercises and are hoping that the fluid will be gone by tomorrow so they can continue to push him for extubation. They did a culture on his ventilator tube and it came back negative. Infection is one of the scariest words in an intensive care unit. We are over joyed every time we hear no infection! During the morning shift change the nurse was doing her assessment and noticed that Owen’s IV in his left arm had infiltrated. He had lipids (liquid fat), Lasix (diuretic) and his pain medication flowing through the line. Unfortunately, the medications were going under his skin and they do not know how long he had not been receiving them and they had been like that. He was very alert and noticeably in pain when we got there. They had to squeeze the medication out of his arm to reduce the swelling and prevent any skin damage. He was miserable. I stood by him holding his hand and tried my hardest to soothe him. It was the hardest thing we’ve ever had to witness. It took everything in me not to pick him up (tubes and all) and run! His heart rate then began to spike more frequently. They ordered another EKG and after reviewing it they believe that Owen has Atrial Ectopic Tachycardia. They have started him on beta blockers and are hoping that this will eliminate the spikes in his heart rate. He will have to be on this medication for weeks maybe even months to keep his heart functioning properly. Lastly, we did have one win today. He has had a cvp line in his neck since his surgery. The longer a line is in the greater the risk of infection. Today they replaced the line and put in a PICC line. This line can stay in for a long time and can be used to administer medication or draw blood. It will limit the amount he has to be poked going forward.
We left the hospital around 10pm and Owen is being taken care of by one of his favorite nurses. We ask that you pray for our little warrior. We ask for prayers of rest and strength. We ask that you pray for his lungs and his precious heart. Please pray for renewed strength and energy for Jeff and I. We are two weeks in and have a long ways to go until we are all home. The days are long and we are so afraid of getting sick from exhaustion. Thank you so much for all of your messages and encouragement. We read your notes everyday and they offer us little boosts of joy.
We’d like to also thank all of those that have served and are currently fighting for our freedom. We are forever grateful for your service and sacrifice. Wishing every one a Happy and Safe Memorial Day.