Life in the ICN is nothing less than surreal. I now have a new appreciation for what Dali was thinking. The nurses work 12-hour shifts (7 to 7). More than once we have seen 3 nurses covering Tyler in one visit. It is rather easy to loose track of which day or even month it is. You can sit down and 8 hours later realize the day is gone. Waiting for rounds or specialist visits can easily take hours.
This disassociation with reality makes it rather difficult to strike a balance between our life, spending time with Tyler and spending time with Rachel. Rachel did really well on her first visit with Tyler, but that will only be good for 5-10 minutes a day. The best thing we can do for Tyler is touch, hold and talk to him. The hard part is finding quiet stable times when it makes sense to take him out of his isolet. Finding time when he is awake is even harder. Depending on what is happening on any given day Tyler us usually only awake for between 30 minutes and two hours.
This week are going to try and bring Rachel up to Lebanon for a few days. Sharron's farther and step-mother are coming out as well. Hopefully we can work out the hand-offs that will keep Rachel occupied and happy while still giving us some quality time with Tyler. The Doctors indicated during our first week that it is very important that we try and keep some level or normalcy in our life. That is hard to do when you can only be in one place at a time.
Tyler is doing great! The nurses say he is LOVING Hi-Flow. They decreased the Oxygen flow and O2 mix (2 LPM @ 24%). He is getting closer to room-air every day. On the "other" front Tyler has moved on to the next stage of diaper loading, indicating that his bowels are coming up to speed. Feeds are up to 7ml 12 times a day.
Queen of the hill Sunday night at the compound and making tea for Zoey this morning.
This disassociation with reality makes it rather difficult to strike a balance between our life, spending time with Tyler and spending time with Rachel. Rachel did really well on her first visit with Tyler, but that will only be good for 5-10 minutes a day. The best thing we can do for Tyler is touch, hold and talk to him. The hard part is finding quiet stable times when it makes sense to take him out of his isolet. Finding time when he is awake is even harder. Depending on what is happening on any given day Tyler us usually only awake for between 30 minutes and two hours.
This week are going to try and bring Rachel up to Lebanon for a few days. Sharron's farther and step-mother are coming out as well. Hopefully we can work out the hand-offs that will keep Rachel occupied and happy while still giving us some quality time with Tyler. The Doctors indicated during our first week that it is very important that we try and keep some level or normalcy in our life. That is hard to do when you can only be in one place at a time.
Tyler is doing great! The nurses say he is LOVING Hi-Flow. They decreased the Oxygen flow and O2 mix (2 LPM @ 24%). He is getting closer to room-air every day. On the "other" front Tyler has moved on to the next stage of diaper loading, indicating that his bowels are coming up to speed. Feeds are up to 7ml 12 times a day.
Queen of the hill Sunday night at the compound and making tea for Zoey this morning.
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