Posted on January 7, 2018
Posted on January 7, 2018Happy Sunday! Although we’ve been on track lately to ditch the nitric again, we’ve experienced a setback. The good news is that it would seem we know what caused it and can fix it. But, that will require us to remain a couple of steps back for at least a few days until Memphis shows us he’s recovered and ready.
A few days ago, his ventilator heater was having issues, resulting in a lot of extras condensation. So he got a few unintentional drinks of water in his trach. That causes him a lot of agitation. In addition to that, his g-tube began leaking. He gets a lot of critical meds via his g-tube and has not been able to completely absorb the administered dosages the last 2 days. So, just heart rate has climbed to a higher than normal (for Memphis) rate sustainably. He’ll be getting some extra sedation and as needed paralytics to help him through it. Thankfully he is responding well to weaning his ventilator rate back down again since they had to escalate his settings when he was at the peak of intolerance.
We’ll keep you updated. Enjoy the rest of your weekend!!
Posted on January 4, 2018
Posted on January 4, 20189 MONTHS! Our boy is 9 months old today. Although we have a long way to go, we’re finally starting to see some progress. With the help of the nitric and some high dose steroids, his ventilator settings are much lower than they’ve been in the last 7 months! Their approach with the steroid regimen is somewhat experimental. While it’s working, we have no clue what to expect after it has run its course. Of course, as I mentioned months ago these steroids also carry the risk of side effects like cerebral palsy. So there may be some neurological complications we won’t be aware of for years to come.
Things that have to happen before he comes home include getting a pump (similar to an insulin pump) for one of his pulmonary hypertension meds, transferring and adapting to a home ventilator, weaning sedation, coming back off Nitric... I’m sure there are things I’m forgetting. But Memphis has shown us that he is capable of anything if we just give him time and let him set the pace. So we have to be patient.
He has 2 teeth as of Christmas Eve, and lives sweet potatoes and bananas. We’re struggling to find the best formula for him as his calcium levels are high. He began a medication yesterday that has to be injected to control his calcium levels until a more effective nutrition plan is worked out.
We’ve been successful at managing his agitation recently with his mobile and bouncy bed instead of extra sedatives, which is a really big deal for him. We’re very proud of our sweet boy for all he is enduring and handling. We’re declaring 2018 the year to slow down #likeasloth instead of #likeaboss. 😉
Posted on December 27, 2017
Posted on December 27, 2017Today, we tried solids!! Sweet potatoes were his first taste of real food and he loved it! He’s been doing great with a spoon and has both of his bottom front teeth now!
The nitric has been reintroduced in an attempt to wean his vent settings enough to be able to get good images from a chest CT scan. Also, lower settings will be less harsh on his lungs and hopefully allow for some strengthening and healing. He remains off the paralytic drip and we’re still working to get excess fluid off of him.
This is little man amazes me so much. ❤️