Last night an oxygen machine and tanks were delivered to our home. They were met with mixed feelings. They represent a new reality and a different path for Blake, but also a sign that we are close to going home and being a united family under one roof.
This past week we have been adjusting our medicine schedules to something that could be sustained at home. With a feeding tube it’s no problem to give a dose of something at 3am, but we’re certainly not interested in waking a sleeping baby at home to give a medication by mouth. So, schedules have been shifting so that nothing is given overnight. This has to be done slowly and thoughtfully to reduce risk of withdrawal – a constant battle for us.
Then there’s food and liquids. We stopped our supplemental nourishment in an effort to make Blake more hungry, interested in food and ensure he is capable of eating enough calories on his own throughout the day. He has proved that he can do it! So with that, we eliminated the need for Blake’s feeding tube. It came out on Saturday, and now we can admire his full face all day long! ?
Blake’s heart and lungs remain the biggest issue, but we are really being challenged by his paralyzed vocal chord. I didn’t know this before we got here, but vocal chords actually serve an important function protecting your lungs when you eat/drink. They are not just for sound.
Last week we failed a dysphasia test/swallow study that indicated that he is still unable to safely drink thin liquids. We have to thicken water, milk and apple juice to ensure he remains hydrated and yet is consuming them without aspirating. If he aspirates, it could lead to a respiratory issue or pneumonia which could land us back in intensive care.
Because our medications are in liquid form, we are required to thicken them too. Rob and I have become chemists emptying prepped syringes into tiny cups, adding thickener, mixing and watching for the perfect consistency and then spoon feeding it to our little guy. It’s a tedious process, but that’s our job right now to keep him safe. Our hope is that with time his vocal chord will improve and his function will go back to normal allowing him to eat and drink items of all consistencies without a problem.
Please continue to keep Blake in your thoughts and prayers. We are convinced that your kindness is truly making a difference – for him, and for us. Your stories continue to inspire us give us strength. Much gratitude.
#forblake #teamblake #gooddeedsforblake #babysteps