Overnight was a wash. There were no real changes to speak of. But today we are making small progress. We are slowly weaning him off his oxygen support in efforts to switch him from a High Flow Nasal Cannula, to a regular nasal cannula, or even nothing at all. He is currently at 28% oxygen (room air is 21%) with 3L of flow. (For anyone truly curious about what the heck I'm talking about... refer to the end for a little lesson. Otherwise just know it's less support than yesterday.) I predict he will need a little bit of oxygen when he's in a deep sleep for at least another day, but tolerate room air while awake.
Before today we've been stuck in an up and down pattern, but I'm learning how to avoid setbacks. It's all about keeping Owen happy. This is easier said than done as he's not able to eat his normal amount. The most he's eaten at a time is 20 ml (1oz). Based off how much I pump, I estimate his normal feeds are 120 ml (4 oz). We have learned to feed him before he becomes agitated or else we get stuck in a catch 22. He will be too agitated to eat (increased work of breathing, high respiratory rate, or coughing), but the only way to calm him down is to feed him. Then the whole "fit" sets him back as he needs his oxygen turned back up to recover. So now I feed him at the very first sign of agitation even if it means he's eating more frequently. He is still on IV fluids because he isn't consuming enough breastmilk to keep him hydrated. Shockingly he hasn't lost any weight! I've also started using a trick I learned from the nurses when he was born. I cover his eyes with his hat when it's nap time to help block out stimulation. It looks uncomfortable but he calms right down.
The original prediction was possible discharge on Monday but that isn't going to happen. I'm going to mentally think Wednesday so I can be delighted if it happens before then. Jesse is sick of being alone in the evenings and overall everyone is missing Mommy. I'm missing home as well. My hips feel bruised from sleeping on the hard couch. Fortunately the kids have been able to come in everyday and visit for at least an hour and the pediatrics floor has a great playroom for us to burn off energy. I made my first adventure out of the hospital in 4 days. I was out of clean clothes and I needed a couple of basic supplies. I ventured out to Target in my stinky shirt and dirty PJ pants. Thankfully Target is pretty quiet at 9am on a Sunday and I didn't see anyone I knew. Somehow I managed to drop $130 when I only went for a couple things. Typical Target!
This is what the set up looks like. There is one dial for his "flow" of air. It can be titrated from 1 Liter per minute to 6 L/min. The air runs through sterile water and is then heated to provide warm humid air. The heat and humidity help keep secretions loose; similar to sleeping with a humidifier in your room. The level of flow is thought to help ease the work of breathing as it forces air in with each breath taken. The higher the flow, the more "help" Owen is getting with each breath.
The center dial regulates his fraction of inspired oxygen (FiO2) and is expressed as a percentage. The air we breathe, or "room air", is only 21% oxygen. HFNC is capable of delivering 100% FiO2. For Owen, the range he can have is 21-60%. Once he is stable on 21%, they will titrate down is flow, and then he can come off of everything. As I said above, he is currently very close to being off oxygen at 28%.
Before today we've been stuck in an up and down pattern, but I'm learning how to avoid setbacks. It's all about keeping Owen happy. This is easier said than done as he's not able to eat his normal amount. The most he's eaten at a time is 20 ml (1oz). Based off how much I pump, I estimate his normal feeds are 120 ml (4 oz). We have learned to feed him before he becomes agitated or else we get stuck in a catch 22. He will be too agitated to eat (increased work of breathing, high respiratory rate, or coughing), but the only way to calm him down is to feed him. Then the whole "fit" sets him back as he needs his oxygen turned back up to recover. So now I feed him at the very first sign of agitation even if it means he's eating more frequently. He is still on IV fluids because he isn't consuming enough breastmilk to keep him hydrated. Shockingly he hasn't lost any weight! I've also started using a trick I learned from the nurses when he was born. I cover his eyes with his hat when it's nap time to help block out stimulation. It looks uncomfortable but he calms right down.
The original prediction was possible discharge on Monday but that isn't going to happen. I'm going to mentally think Wednesday so I can be delighted if it happens before then. Jesse is sick of being alone in the evenings and overall everyone is missing Mommy. I'm missing home as well. My hips feel bruised from sleeping on the hard couch. Fortunately the kids have been able to come in everyday and visit for at least an hour and the pediatrics floor has a great playroom for us to burn off energy. I made my first adventure out of the hospital in 4 days. I was out of clean clothes and I needed a couple of basic supplies. I ventured out to Target in my stinky shirt and dirty PJ pants. Thankfully Target is pretty quiet at 9am on a Sunday and I didn't see anyone I knew. Somehow I managed to drop $130 when I only went for a couple things. Typical Target!
Our glorious plunder last night. Outback Steakhouse!
Catching some Zzzz's when we can
My morning face time with Princess Elliott
The left is what he eats... the right is what he used to eat
Playtime!!
Nap time!
High Flow Nasal Canula (HFNC) Expained
The center dial regulates his fraction of inspired oxygen (FiO2) and is expressed as a percentage. The air we breathe, or "room air", is only 21% oxygen. HFNC is capable of delivering 100% FiO2. For Owen, the range he can have is 21-60%. Once he is stable on 21%, they will titrate down is flow, and then he can come off of everything. As I said above, he is currently very close to being off oxygen at 28%.
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