I will be using diary format for this post.
We said goodbye to Elora before we left for my Aunt’s house in South SanFrancisco — where I’ll be living full-time until it’s time to take Eric home. Richard and Elora will be visiting on weekends. It was hard to say goodbye to my little girl… I miss her soo much.
We arrived 15 minutes late, which didn’t matter because the check-in folks were very far behind. Once we were called, we were promptly taken to pre-op. The nurse had us undress him down to his diaper and put him in an infant hospital dress. It had little tigers on it, with writing, “Lions, Tigers and Bears.. oh my!”
Not having eaten formula since 2 a.m. and Pedialyte since 5 a.m. — he was quite the trooper for someone starving. The fact that he was sooo hungry didn’t stop him from being outright adorable. He was trying sooooo hard to be happy as Richard played with him. He cried off and on, but would recover quickly — like he was choosing to be happy.
His anesthesiologist was an elderly British man, with a young, burly side-kick. They were very sweet… but I did miss Danton (the anesthesiologist he’s had every other time). They predicted 6-7 hours before we would see Eric again. Thank God I came prepared with productive distractions.
I took pictures of Eric with the Mushu I gave him. (Back story: The Mushu was given to me by my mother, whom claimed to be my Mushu and I was a warrior princess. I then passed it down to Eric as a symbol of protection, love and everything else that I will be to him.) I wore my new earring Mushu.
From there, I watched as he was carted off to surgery. That’s always hard…
Ill ill never get used to letting my baby be taken from my arms. Knowing what pain he’ll be in. It kills me every. Single. Time. I know Richard has just as hard of a time as I do.
Richard desired food, so off we went (after checking in with the waiting area, giving them our numbers) to the cafe. While we searched the cafe for something appetizing — all that I could muscle down was OJ — a clinical research nurse practitioner approached us, via the help of a volunteer that had introduced himself from earlier. She stated that Eric was available to participate in two research studies and wanted to talk with us about it. We agreed to speak with her later.
We found my favorite nook to camp out in. It’s the first outcove outside the NICU, 2nd floor.
I began, strand by strand, piecing together Rapunzel hair. Elora loves to play Rapunzel… with toilet paper. Many an evening we hear her high-pitched, three-year-old voice shouting from the top of the stairs, “Rapunza, let down ha-ir!” And we hear the thud of the toilet paper roll as she throws it down. Or not. Sometimes she lowers it down and we just see this long strand of toilet paper dangling from the top — and a little giddy face peering from behind the other end.
“Mommy! Climb my hair!”
So, several toilet paper rolls later, I decided this expensive playtime was enough. I bought two, thick spools of bright, sun-yellow yarn for $3 each.
I was determined to make her real Rapunzel hair. So, Richard helped me measure out 13 ‘ of the yarn. Then, strand by strand, I measured, cut and tied each end… all in this six foot outcove.
While I did this, the clinical research nurse practitioner, named Sara, joined us as we talked about the studies Eric is eligible for.
I began questioning the aspects of the studies, the hypothesis, etc. At first I thought she was kidding me, being so impressed with my questions regarding the study, but not… she was genuinely impressed with the depth and clinical implications I worried about. I didn’t think the questions were anything special — they just came to me. I was surprised other people don’t ask them.
She soon recommended, with all sincerity and a surprising amount of insistence, that I seek a Clinical Research Coordinator Certificate… and that I could work for her. She asked me to stay in contact with her, even, so that she could minimally help me get my foot in the door at Stanford or Davis. I was stunned by her insistence. And highly flattered.
She began interviewing me… even Richard agreed that it felt that way. I certainly sensed it and mentally kept in check: speak slowly, clearly.
I’d love to work at Lucile Packard. I’d love to give back. I still can’t get over her insistence…
Once she was done, Richard and I talked about the studies, while I continued to work on my Rapunzel hair. We discussed the hypotheses… while Richard helped me braid all 13 feet of yarn. That was a feat in itself. I was very thankful for his help and great braiding abilities. I know how to braid, but his knowing helped things move quickly.
I couldn’t have done it alone. Well, I could have, but I would have had to lay it on the floor… practically play hopscotch with it… for an hour probably. The entire project took me about two hours with help.
I am very proud of my Rapunzel hair.
So, now… we sit watching ONCE UPON A TIME on Richard’s phone, with excessively splotchy wifi.
Sara soon brought our copies of the paperwork. And the news that they have to wait to do one of the studies in a few days (because they have to draw blood) because he’d already received blood products (in surgery). This told me, and my face instantly fell… that Eric’s heart … was stopped.
He was on bypass.
This surgery hit me harder than any other surgery. Probably because there was a lot more time for anticipation to build before this one. And it’s horrible. I know it hit Richard hard, too. We couldn’t bring ourselves to talk about it. We just focused on our distractions.
At 1:45 p.m., I got the call that Eric was being discharged to the CVICU. About 30 minutes later, we were waiting outside the CVICU, Dr. Reddy (Eric’s miracle surgeon) met with us. It was only about a five minute conversation. Dr. Reddy was all smiles. He talked about what he did and that everything went perfectly. He did massive overhaul on the tricuspid valve, and more. i know what they did, but I don’t know the technical terms off the top if my head. In general, it was a massive reconstruction of the right side if the heart. The pressures are now in a safe range, whereas before they were reaching fatal numbers. Only half the blood flow as before is going through the right side of his heart. The main purpose for the surgery was to comnect the heart with a main steely that helps half the blood bypass the right side if the heart and go straight to the lungs. It’s called a Glenn. I will revise this section when I get the technical overview from the hospital.
Needless to say, we both breathed easy for the first time in a long time. Well, not easy, but we felt some relieve. The scariest part was over. The surgeon did say he will most likely need valve work done in the future. That may or may not involve open heart surgery again.
This was so hard for us. We’re so grateful to be one step closer to leaving these surgeries behind us.
About 45 minutes after that, we were finally reunited with Eric. He was discharged into the Pod, instead of an isolation room, because they closed his chest. Last time, they left his chest open for 4-5 days just to make sure they didn’t need to go back in.
He looked amazing. My little Iron Man. I call him Iron Man because of the metal wires that keep his chest closed.
He will not be allowed to be bathed for the next six weeks (beyond sponge baths), along with no tummy time, or being picked up under the arms. That’s more difficult than it sounds.
He was laying in an upright position because of the “Glenn Headache.” I guess the blood flows slower in the upper extremities for a while after surgery. My poor baby….
At 7 p.m., we called to check in on Eric (we had to go home and eat). They hadn’t taken the breathing tube out because they hear wheezing in his lungs. It can only be heard with the stethoscope. He’s on medication for that now.