He started to wake up and was very hoarse and groggy from the breathing tube and anesthesia. His nurse brought down a bottle I had just pumped to try and feed him with. He tried to take a couple sips, but winced and cried this awful, raspy cry that was not his. It broke my heart to hear such a foreign sound from my not even 3 month old baby. The doctor that had performed the cath came in to check on him. She then turned her attention to me and casually announced he'd have his surgery before going home. My heart sank and a desert formed in my throat. She kept talking but I couldn't hear her.. I shook my head and "mmm-hmm"ed her as the tears brimmed my eyes. She asked if I was OK and I could feel a tear stream down each cheek. His nurse felt my heartache and said "Oh mom.. it's OK". I somehow squeaked out, "He's just so little."
I sucked it up, wiped my face, kissed my baby and held him until mom and Jeremy walked in. I told them what the doctor had said. We would still have to wait to talk to his cardiologist and figure out what was going on and what was going to happen.
While we waited in the recovery room, Jacks o2 sats were dismal, dropping to the 40's and 50's. I heard the word transfusion and cringed. The thought of a strangers blood pulsing through my baby's body was not something I wanted to happen. Jeremy suggested moving his o2 sat probe to his hand because that's where they typically got a better reading.. and sure enough his numbers climbed all the way to the 70's!
Dr. T finally popped his head in, affirming what we were told, that he didn't want Jack going home until he had surgery, however which surgery that would be was still uncertain. He had to talk to the surgeon ango over the findings from the cath lab before any decisions were made and any surgeries scheduled.
Finally, around 2:30 in the afternoon, Jack was moved back to 8 East. We all took a much needed break and headed to the Squealing Pig for lunch. When we got back, the nurses were walking in with syringes of blood and an empty blood bag. While we were gone, it was decided Jack would benefit from a transfusion. It would bump up his o2 sats until surgery. It took 4 hours and it did intact give him a nice boost. I asked his nurse if they do a lot of transfusions for cardiac kids and she said they do them ALL the time.
After his transfusion, Jeremy accompanied him to a chest X-ray. The rest of the night was pretty rough for Jack. He was very congested, restless and fussy. Poor guy just couldn't get comfortable which everyone assured us was normal after having anesthesia. His nurse Danielle was fantastic-- she pretty much took him for most of the night. They had a little trip to the spa (tubby time) and he hung out at the nurses station and flirted with all the pretty ladies.
He is doing much better today all around. His o2 sats are up, he is eating more and more, he isn't as fussy.. he is still very congested. He has been eating from bottles and not nursing. I think he's having a tough time getting use to nursing with the oxygen attached to his nose. We'll keep working on it.
Auntie Angie and Will came to visit us this morning with coffee and muffins! It was so great to have visitors and have a couple laughs after a tough couple days. So thank you guys!
Dr. Ronai is back from being out of the hospital for the past week and came by to see us! He was at the nurses station when she came in and immediately turned back around to have him brought back to the room so she could hold him. Then we sat and chatted. She and Dr. T had been talking and she asked me how I felt about going home with Jack on oxygen for a month. I told her I'd do whatever she told me to do and whatever she thought was best for Jack. She went on to say that Jack is still a little small (despite is chubba bubba status) and that he would need a bilateral Glenn (1 on each side of his heart rather than 1 like they usually do). They are still waiting to talk to all the surgeons and to make a long story short, we are waiting to see if a surgeon looks at Jack's history and says let's not wait and do the surgery now OR if a surgeon says let's fatten him up a little more over the next month and hold off on surgery until then.
For now, Dr. Ronai wants to see what his o2 sats look like for the next 24-48 hours. If we go home for a month, we will probably get sprung from here after the weekend.. MAYBE Friday.
Quite the roller coaster, no?! I would sit and ride this coaster forever for him... even if my seatbelt was broken. I'd hold on for dear life if that's what it took to get Jack well.
Believe it or not, I started writing this post around noon... it's now 4:30. Despite feeling much better, he still needs lots of attention and TLC from his mama. This baby likes to snuggle.. and apparently he wanted to help me finish this post.
Dr. Ronai and Dr. T may stop by later tonite to check in. If not, I will def see Dr. Ronai tomorrow. Until then, I will be hanging with Jack here at Children's.
I will update when I know more about what's coming down the pipeline.
xo Marissa
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