We are home! On Thanksgiving to say the least. We were not expecting to be home so soon or in interstage. We have literally been ping-ponging back and forth between going home and not going home. What’s bothersome is that they tell us all the reasons for not going home and why they’re not sending us home then a week later they’re telling us we’re going home without solving the reasons they were sending us home. So to say this is scary is an understatement.
Carter could die. It’s real and there’s nothing we can do about it. It’s taken me a long time to shove this thought to the back of my brain and pretend it’s not there. I heard the stats. 10-13% survival rate during this stage. I lean on God and I pray every day– multiple times a day for the Lord to see us through this syndrome and be the survivors. A testimony to share. I pray we’re doing right by Carter and our older children. There’s a lot of lingering thoughts in my brain that I’m not sure will ever be addressed. I just keep shoving them back. I’m scared. I’ve said goodbye to three babies please Lord don’t make me say goodbye to my fourth.
Carter had a cath on the 21st. I hate caths. I hate them with all my heart. The doctors always come back with bad news and this time was no different. While Carter survived the procedure and it was the smoothest procedure the Doctor had ever performed, he still delivered bad news. Carter’s pulmonary artery had not grown and even worse his right lung was smaller than his left. A side effect of this is that his mammary gland grew into his spine and lung to create blood flow to his right lung. This is bad. This means he was really sick and close to dying on us and we could’ve missed it if it weren’t for this cath. The team thinks they fixed the problem but I’m not so confident. His shunt was kinked and that’s what they believe was restricting the blood flow to the right artery and lung. Now when they installed the stent, there was blood flow to the lower lung which is a very good sign. Now we just need it to grow!
11/21 The Cath.
So I got the bad news 6 hours before I had the chance to talk to the Superman team. I sat and a dwelled at what looked like a bleak future for Carter. I cried and I mourned. Then Superman entered the room and saved the day. Dr. Bryant explained that while this is a setback it’s not bad. There are still options. Many options. But before those options could be done he wanted to give a stent a chance to work. He truly believes this is what the problem is and is also praying that upon our return in January, we will not need anymore interventions prior to the Glenn. He wanted us to first and foremost go home and enjoy our holidays as a family. As he said this I finally had enough and started crying again. So did he. Lots of hugs later he exclaimed he didn’t do well with tears and moved on to his next patient. It was the final piece of confidence instilled in me that I was hunting before we took Carter home.
Preparing for home as while processing the results of his heart cath. They slammed with education. I learned CPR, when to call cardiology, safe sleep, how to install a car seat, how to replace a ng tube, how to add feeds, how to troubleshoot the feeding pump, how to give meds, what meds he was on, their generic name, the amount of each med, what to do if he threw up the med, what do do when he threw up, how to flush his line, how to give my son an injection, how to draw up meds, the medication side effect, what the medication did for him, and so much more. I had to meet with plastics to discuss his head shape, I had to meet with the interstage nurse to go over the home process, and I had to meet with pharmacy to go over his Lovenox shots. Did I mention during that time I was fielding phone calls from the interstage nurse, home healthcare, home medical supplies company, Dayton Children’s home delivery, and the hospital?
I. Was. Done.
Interstage is a time we spend at home because the risks in the hospital are the same risks at home and should something occur the odds of him surviving are minimal in both settings. We’ve come home on half a liter of oxygen and a feeding tube. The morning of discharge the oxygen guy met us at the hospital and showed us how to use the travel oxygen tank. I must admit after all the stuff was slammed in my face, I have no idea what he said. I’m so thankful Rob was there to listen and understood right away.
Then that was it. Our favorite nurse sent us on our way at 2p. When we take Carter anywhere there has to be two of us. One to sit in the back to monitor Carter and one person to drive. I made Rob sit in the back knowing that I would over analyze every little move and breathe. We got home at four having missed a feed because of the two hour drive and the nurse from Dayton Children’s showing up and hour after she said she’d be there. Looking back, everything seemed so much harder when we first got home, now it’s a walk in the park. We set him up and he had his first meal at home.
The oxygen guy showed up with quite a bit of equipment. We have an oxygen concentrator that plugs into the wall and runs 24/7. Problem. It only has a 25 foot chord. I can’t even walk into my kitchen with Carter. It won’t reach. We succumbed to the fact that our bedroom was now our living room. Good thing we’re not allowed any visitors! We have a back up tank for if the power goes out. NO Smoking in or around our home. Although the machine we have obviously spent time in a smoking environment. Yuck.
To get a second concentrator for the upstairs will cost us $253.00 a month. I pray this surgery in January will end the need for home oxygen. It’s easy but it’s not.
We’re on our own. This first night was rough. Carter didn’t want to sleep in his bed but through recommendations from a couple friends we went out and bought a mattress pad for the pack n play and it’s been easier since.
Sad news though. No visitors except Grandmothers and Grandfathers. Period. The risk is real. Carter, the kids, Rob, nor I can afford to get sick. Our kids get home from school and immediately hit the showers. We’ve already gone through tubs of Lysol wipes and bottles of hand sanitizer.
We have a scheduled date on January 9th for his next heart cath to see if his pulmonary artery has grown and if his right lung has caught up with his left lung. We have a tentative OR date for his Glenn Shunt on the 16th of January.