| 9:11 PM |
Sunday |
Today was a very eventful day. Sam has really struggled with eating, particularly from a bottle. So, even though he has been eating some rice cereal from a spoon for the past 24 hours, it's too little too late. It's been 5 days since he's eaten anything substantial and a feeding tube (nasojejunal or NJ) was ordered today. Not a fun procedure, but we all agreed he needs the nutrition. This tube bypasses the stomach, so at least we'll still be able to feed him as he regains his appetite. Hopefully this setback will not adversely impact the duration of our stay. He has 7 more days of the IV antibiotic, and a lot can change in 7 days.
We were moved from the 6th floor up to the 7th floor today. We feel good about this move, as so many of the nurses on 7 are familiar with Sam and we are familiar with them. It's been a hard day filled with hard realities. We miss the kids, we miss each other and would love to see Sam make consistent forward progress. We can't hang our hat on any particular diagnosis or theory yet. We are hopeful and prayerful that Dr. Holland in Bethesda, MD will accept Sam in the STAT3 study. This study would confirm or rule out Hyper-IgE syndrome. There are many other theories swimming around for which he's being tested, this one happens to be the most difficult to do and perhaps one of the more likely culprits.
In a lot of ways this has already seemed like our longest hospital stay yet. A lot of the choices we've had to make as a result of the timing of this round have made it particularly painful. We are grateful for the support of our friends and family. It's easy to feel isolated in situations like this, and the calls and visits are greatly appreciated.
We were moved from the 6th floor up to the 7th floor today. We feel good about this move, as so many of the nurses on 7 are familiar with Sam and we are familiar with them. It's been a hard day filled with hard realities. We miss the kids, we miss each other and would love to see Sam make consistent forward progress. We can't hang our hat on any particular diagnosis or theory yet. We are hopeful and prayerful that Dr. Holland in Bethesda, MD will accept Sam in the STAT3 study. This study would confirm or rule out Hyper-IgE syndrome. There are many other theories swimming around for which he's being tested, this one happens to be the most difficult to do and perhaps one of the more likely culprits.
In a lot of ways this has already seemed like our longest hospital stay yet. A lot of the choices we've had to make as a result of the timing of this round have made it particularly painful. We are grateful for the support of our friends and family. It's easy to feel isolated in situations like this, and the calls and visits are greatly appreciated.
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