Day +48
WBC 3.8
Today was much calmer than yesterday. Max actually got some sleep and it was so nice to see. He hasn't slept more than 2-3 hours straight all week. He continues to wheeze and is still on the continuous albuterol neb. He is also still getting the atrovent nebs every 4 hours and pulmicort (nebulized steriod) 2 times a day. They added a new medication that I cannot spell or pronounce to help with the secretions in his lungs. It is mostly used for kids with Cystic Fibrosis. We are still extremely worried, but comforted by the fact that he is resting more today.
Just when we thought that his gut was on the upswing, Max surprised us with two diapers full of blood. They will be revisiting the issue of the scope tomorrow. On our request, we will be having a care conference with the different departments caring for Max tomorrow afternoon. We are not sure where Max stands right now, and we just want to get everyone's perspective on things. As Mike mentioned yesterday, we now have all new docs as the rotations have changed. We just want to make sure that someone who knows Max well is always going to be following him. While we know the doctors can't stay on rotation forever, it is really stressful when your child is so sick and the staff keeps changing.
Just to give us one more thing to worry about, Max's central line is slipping out. We noticed during his dressing change that the stitches that used to be under his skin are now hanging out so as I write this the nurse is putting some steri-strips on it. If that doesn't work he will need new stitches. The biopsy of the bruises on his back came back negative for infection.
Grace now has a cold, not surprising since everyone at RMH seems to be sick. Her cold is not too bad, but enough to put me over the edge last night. I am sure Mike and I will get it since we are getting no sleep. I called my mom at midnight last night and had a full meltdown, so Grannie caught a flight today and is now in MN! We can get some much needed sleep now. She will leave on Saturday when Mike's mom arrives.
I am going to hold Max now so I will keep it short tonight.
-Margaret
Today was much calmer than yesterday. Max actually got some sleep and it was so nice to see. He hasn't slept more than 2-3 hours straight all week. He continues to wheeze and is still on the continuous albuterol neb. He is also still getting the atrovent nebs every 4 hours and pulmicort (nebulized steriod) 2 times a day. They added a new medication that I cannot spell or pronounce to help with the secretions in his lungs. It is mostly used for kids with Cystic Fibrosis. We are still extremely worried, but comforted by the fact that he is resting more today.
Just when we thought that his gut was on the upswing, Max surprised us with two diapers full of blood. They will be revisiting the issue of the scope tomorrow. On our request, we will be having a care conference with the different departments caring for Max tomorrow afternoon. We are not sure where Max stands right now, and we just want to get everyone's perspective on things. As Mike mentioned yesterday, we now have all new docs as the rotations have changed. We just want to make sure that someone who knows Max well is always going to be following him. While we know the doctors can't stay on rotation forever, it is really stressful when your child is so sick and the staff keeps changing.
Just to give us one more thing to worry about, Max's central line is slipping out. We noticed during his dressing change that the stitches that used to be under his skin are now hanging out so as I write this the nurse is putting some steri-strips on it. If that doesn't work he will need new stitches. The biopsy of the bruises on his back came back negative for infection.
Grace now has a cold, not surprising since everyone at RMH seems to be sick. Her cold is not too bad, but enough to put me over the edge last night. I am sure Mike and I will get it since we are getting no sleep. I called my mom at midnight last night and had a full meltdown, so Grannie caught a flight today and is now in MN! We can get some much needed sleep now. She will leave on Saturday when Mike's mom arrives.
I am going to hold Max now so I will keep it short tonight.
-Margaret
posted by Mike Ciacciarelli
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