As Trish already mentioned, our weekend was a bit surreal. Olivia, Wilson and Max got a huge morale boost by our two days at Disneyland/California Adventure. It was cold and rainy enough that we had to seek shelter a few times, but it also served to keep the crowds away. We watched the kids get lost in the experience, laugh and have fun, try some new risky things (like Olivia and Space Mountain) and come away thrilled. I found myself trying to learn how to feel two very conflicting emotions at the same time; sharing the joy of the kids’ experience while feeling burdened and heavy for Rudy and the struggles we knew he was having over the weekend. It brought us again to a place of feeling very torn–we have a baby in ICU and it kills us to not be there, but in front of us there were three kids who were finally getting some respite from months of upheaval who need us just as much as Rudy does. So I often found myself in a bit of a stupor–loving the fact that my kids were care-free and bouncing around with smiles on their faces, yet troubled that I have a baby in critical health and I’m at an amusement park. Wish there was a guidebook for such things.
Rudy was on a rollercoaster of a different kind and we’re so glad that Oma was keeping an eye on things at the hospital for us. On our way back from Anaheim, we stopped at the hospital to pick her up and drop off Trish. While there we had a long check in with Dr. Rick which brought us back to reality a bit quicker than we may have hoped. This week, there are three items on the agenda for Rudy: A tracheostomy, a gastro-intestinal consult, and a neurological exam.
None of the three terms seem all that warm to us, least of all the first. Rudy has had two very solid attempts at breathing on his own and was not able to maintain things without the accumulation of mucus in his lungs. As all of the conditions were seemingly right for these two attempts, there isn’t much reason to believe trying again in a few days or a few weeks will bring a different result. On top of this, re-intubation is a disruptive procedure which has been shown to negatively impact Rudy’s heart rate, so having a port in his neck to breathe from can give the team more options with the ventilator and allow them to suction the lungs more effectively. It’s obviously an option one hopes not to take, but it is viewed as temporary–as patients grow bigger and stronger they are able to eventually breathe normally. As it turns out, the ENT specialist Rick contacted today and really wants to involve happens to have an open OR window tomorrow (Tuesday) morning at 10, s0 we gave consent to go ahead with this procedure. As part of the process, they do check the trachea and lungs very carefully just to see if there is some kid of physical obstruction which may be causing problems, but Rick isn’t expecting them to find much. We should be prepared for the tracheostomy.
The team is also going to look closely at Rudy’s stomache function as he has had difficulty with every attempt to feed him thusfar. As we spent most of our discussion on the topic above, we’re not sure all that’s involved here, but they do need to get some specialized input on what might be going on here.
Lastly, Rick wants some good imagery done on Rudy’s brain mostly because there is no good explanation yet for the consistent fevers he has. We want to be sure there isn’t any kind of abscess in his brain that might be hiding somewhere. There’s not much evidence of neurological issues with Rudy, other than a tendency he has of looking to his left more than the right–but this could might be more out of habit.
Three pretty big things to grapple with and we were grateful for Rick’s forthrightness and care in explaining them to us. We trust this team and their commitment to Rudy and our family. Very little is known about HLHS and why it strikes, but so far there is no link drawn between it and the incidence of other conditions. From my layman’s perspective, the same steps needed to correct this heart lesion also inflict trauma on a delicate little newborn body. Recovering from them presents quite a challenge. Most readers would have to wonder if we’re going to extreme means to help a little boy who can’t breathe or eat and, having discussed this with Dr. Robert, I took the opportunity to ask Dr. Rick. It’s a conversation you can’t quite believe you’re having about your child, but the assurances we have from both of them are that their plan for treatment still views Rudy’s issues as surmountable and that he will move beyond them. So we cling to that amidst twists and turns on a rollercoaster scarier than we’d ever dreamed.
Please pray for Rudy on Tuesday at 10am PDT as he’ll be in surgery. Trish will be on hand and will post updates accordingly during the day.