What. A. Week.
I am so tired, but I’m not complaining. I’m so happy to be home. Even more amazing– we were home for Christmas! The first night we got home, I was trying to organize Daniel’s meds, and I looked down to see David standing next to me with tears running down his face. I think he was overcome with emotion. The kids are starting to really understand that we are home for good. We are all adjusting to our new life. This has been the most exhausting, most stressful six months of our lives.
I am starting to accept that Daniel will never be “normal.” I have looked at each stage in this process–Norwood, Glenn, Fontan–as some kind of gatekeeper for normalcy. “After the Glenn, Daniel will be a ‘normal’ baby!” I thought. Now I am starting to understand–this life is forever changed. It’ll never be “normal.”
Daniel takes meds at the following times: 1 a.m., 2:30 a.m., 4 a.m., 6 a.m., 8:30 a.m., 9:00 a.m., 10:30 a.m., 1 p.m., 4:30 p.m., 7:30 p.m., and 9:00 p.m.
Daniel’s life depends on these meds, so either Brian or I are the only ones who feel comfortable giving them.
Daniel is attached to his feeding pole from 9-11 a.m., 12-2 p.m., 3-5 p.m., 6-8 p.m., and 9 p.m.-7 a.m. He is also attached to oxygen 24/7.
We are slowly weaning his oxygen. He is only at half a liter. I am starting to take him off oxygen for 15-20 minutes at a time while he is awake during the day. He always does well. I think we are quickly getting to a point where Daniel will only need oxygen at night while he is sleeping.
We have started weaning down his sedation drugs–Clonidine, Ativan, and Methadone. In two weeks, Daniel will be off those meds, hopefully. This will be a tough couple of weeks because Daniel is so sensitive. He was on a huge dose of fentanyl for 3 weeks after his Glenn, and so we are going to take this wean process very slowly.
Daniel had labs drawn and his post-Glenn echo on Wednesday, and today (Friday 12/28) he had an appointment with his Temple cardiologist, Dr. Pliska. When Daniel was “interstage,” we had to frequently see his single-ventricle cardiologist in Houston. Now since Daniel is post-Glenn, we don’t have to see the Houston cardiologist anymore. In 2 years, we will have to go back for his pre-Fontan Cath, but that is it.
Dr. Pliska says Daniel looks really good overall, but there are three things that are concerning:
His left pulmonary artery looks small. We are going to have to keep a close eye on it. If it doesn’t grow, then Daniel will need to get a stent put in it to make it bigger.
He has a paralyzed diaphragm. Dr. Pliska says this is likely permanent.
He is on sildenafil, which dilates his blood vessels. Apparently this means Daniel has “pulmonary hypertension.”
All three of these things means Daniel may be a “high risk Fontan.” Of course…Daniel was a high risk Norwood and a high risk Glenn. I am getting SO SICK of hearing those words.
Can’t Daniel catch a break??? The kid got three different respiratory infections after the Glenn, has had his vocal chord paralyzed twice, and now has a paralyzed diaphragm. Why can’t one step in his journey be simple?
The minute I start thinking this way, I remember what Dr. Salazar said when I voiced similar frustrations to him.
“Daniel is such a miracle. Five years ago he wouldn’t have made it. Look at him. He is going to be okay. What a miracle!” Thanks be to God. I am trying to keep things in perspective. Things won’t always be this way. It will slowly, but surely get better. Each day is still such a gift.
Daniel is very weak after being 8 weeks inpatient for his Glenn. His arms and legs are really stiff. I am working on stretching his limbs out. Soon we will see PT, OT, and speech therapy. We will start working toward feeding by mouth.
If he is anything like his brother and sister, he will soon be a big, active baby. For now, he is tiny and weak and sore. He breaks my heart. I want the world for him. I’ll do my best to give it to him.
The weeks ahead will see Daniel grow and build up strength. Hopefully, as he grows, he can start weaning down some of his diuretics. Hopefully soon he can start bottle feeding. He will get evaluated by speech therapy, and they will recommend whether he gets another swallow study done to see if he is aspirating. If a swallow study shows he is not aspirating, then we can start feeding as much by mouth as possible.
There are so many things I could worry about, but I’m not going to waste my energy. There are too many things moment to moment that require my undivided attention.
David and Hannah are adjusting to our new normal. Their baby brother is still a relatively new experience for them. They are starting to get used to the fact that Daniel is home for good.
David is going through some emotional growing pains–he wants independence, and he thinks his job is to protect everyone. Somehow in eight weeks he has turned into a little man. He has been showing off to me all the things he can do. He gets his own cups out of the cabinet and drinks out of the fridge. He likes to go outside and walk to LaLa’s house by himself without me watching him. He can get anything from any cabinet in the kitchen by climbing. He wants to be taken seriously and gets really offended when I laugh at him or tease him. He tries to outsmart me in arguments. When I tell him “no,” he has a well-thought-out argument for why he should be able to. Frequently I think, “If he is like this at barely 4, what in the world will he be like when he’s 14?”
Hannah is a total drama queen. She is so incredibly sweet and affectionate, yet she is also a firecracker. As the second child, she has learned to be LOUD to get her way. She is such a baby still at two-and-a-half. She is very strong-willed and stubborn, but also beautiful and sweet and fun. I absolutely adore her. She doesn’t have a clue about how precarious Daniel’s situation is. She loves her baby brother, but she also has no problem trying to move him out of the way when she wants to sit with me. “Mommy, PUT DANIEL DOWN!” is her favorite phrase right now.
And what about Daniel? Daniel is a momma’s boy all the way. He and I are attached most of the time. I am the only one who has “the touch.” This was the case with David and Hannah as babies too, but Daniel and I have been through hell together. I have been with him practically 24/7 through it all. He and I have something that few others can understand. He is so sweet. He always has a smile for me, and he finds joy in little things that others take for granted. He loves his big brother David. You can see it in how his face lights up when David comes around. Hannah is still a little rough with him and loud, but he loves it when she gives him his Paci and says, “I love you, Daniel.”
I thought that after the Glenn, Daniel would be able to be a “normal” baby. I thought we could go out in public more and stop being such recluses. I was wrong. Daniel is so fragile, and he doesn’t have much reserves. If he gets sick, it means his life is in danger. It means more hospital, more misery. We are trying to keep David and Hannah away from germ-carriers as much as possible. It really sucks because that means isolating them from other kids. We just have to get through this cold and flu season. Nothing is worth risking Daniel’s life.
Even if we wanted to take Daniel somewhere, it is no easy feat to travel. We have to take oxygen tanks, his feeding pump, and his meds. Right now, it is just easier to hunker down. In a few months when cold and flu season is over, he will be off his oxygen and most of his meds. He will be bigger and stronger and less fragile.
My appearance and my house have completely gone by the wayside through all of this. I am having to learn to just let go of things. Between David and Hannah’s needs, Daniel’s feeding pump, meds, diapers, not being able to leave a five foot radius because of his oxygen, and trying to keep him from crying, I and my house are a mess. I wouldn’t change a thing, though.
We are HOME, y’all. That is EVERYTHING.