3 procedures in 1 surgery

July 17, 2011

Wyatt is doing considerably well. He is riding the ventilator a lot less frequently while asleep. In fact, most of the time Wyatt breaths over the ventilator now in the 40s-50s when he’s sleeping. When he’s awake, he does still hold his breath for a while and turns blue when he gets really mad. But the nurse said it’s fairly common with a lot of full-term babies on the ventilator. I don’t freak out over that anymore but it is hard to see him like that because all I want to do is hold and comfort him. It’s not that simple with all the wires and tubes attached though so all I can do is talk to him, pat him and wait for him to calm back down. He does always pink right back up again as soon as he takes that first breath and then he is all worn out and usually takes a mini 1 minute nap. Aside from that he is very alert now and stays awake for longer periods of time. He has toys hanging over his crib now that he boxes with his hands sometimes. He can’t manage to do it intentionally yet but he enjoys looking at them swinging around. A little over a week ago he learned to smile and move his head, too so he’s starting to show his personality. He melts my heart every time when I get to the hospital because he knows when I walk in the room. He immediately starts moving around more and looks right at me. He usually gives me a great big smile, too. The opposite is also true when I leave though. He can be sound asleep and as soon as I grab my bag to leave, he gives me that look that breaks my heart again. Way to let me know who’s really in charge. We’re going to be in so much trouble when he comes home ;)  Seriously though, my patience is being tested. I just want him home and it’s really hard to wait. The surgery date has been confirmed for this Tuesday at 1pm. Wyatt is having a tracheotomy, a G-tube and a Nissen done. The Nissen is a procedure that wraps part of the upper stomach around the esophagus to prevent reflux. Wyatt only has mild reflux but it tends to get worse after a G-tube is placed. I was on the fence about the Nissen procedure for a while but after talking to the doctors and going over the pros and cons, I have to trust the doctors. Ironically, anybody who knows me well knows that I don’t trust doctors. But I also know that these are the experts in the fields of Neonatology and the surgical team is specialized in neonatal surgery. That’s all they do. I have to trust that their recommendations are in Wyatt’s best interest. After all, Wyatt can’t tell us that he has heartburn and if it continues or gets even worse with the G-tube, it can lead to further irritation. After the surgery, Wyatt will be sedated for a good 5-7 days to let everything heal properly. Feedings should start back up within the first 24-48 hours after surgery, increasing gradually until he is back up to his regular feeds of 80cc every 3 hours. Once he is no longer on sedation, we’re hoping to be able to try bottle-feeding again. We’re keeping our fingers crossed that Wyatt will be able to relearn to take his full feeds by bottle without complications so that he ends up not needing the G-tube for long. If everything runs smoothly after surgery, they may even decide to try “sprinting”, which means the doctors may decide on a specific time frame during Wyatt’s awake periods where they will let him try breathing without the ventilator… Everything will depend on how fast Wyatt recovers after surgery to determine when he could possibly come home. There is still a lot to do on our end as well. The home ventilator has to be ordered, we have to learn how to use all the equipment and how to take care of the trach and G-tube, and all financial matter have to be sorted out for home nursing care. Best case scenario, middle to end of August is what I’m secretly hoping for to bring Wyatt home. But who knows. End of August the two bigger boys have to go back to school, too which now comes with its own set of problems. Once Wyatt is home, I won’t be able to drive the 9 and 6 year old to the bus stop anymore. They take the school bus but the bus stop is 1mile from our house on a very busy road in front of the entrance to our neighborhood. Since they are the only two children getting on that bus, I’m trying to work with the principle of their school and the transportation department to see if the bus can pick up and drop off a little closer into our neighborhood. As if all that wasn’t enough to figure out, we’re also going to have to rearrange things or even remodel our house to make caring for an infant on a ventilator possible in a two story home. All our bedrooms are upstairs and going up and down with all the medical equipment every day will be next to impossible. We’ll probably have to turn the downstairs family room into another bedroom and install walls and doors. So there is a lot that still needs to be worked out. Right now, we’re just anxious for Tuesday’s surgery so that Wyatt can finally have a chance to move more freely and not have his face taped up anymore. I’m sure I’ll be a nervous wreck the day of the surgery.