CHOP Main Campus Day #3
Today is a good day. We have actually had two good days. There may have been more right before that, but I can't remember that far back right now. Days at the hospital turn into a blur.
Leo has gone up in weight for two days now. He has had less pukes (which are smaller). He is tolerating 10 hours on the pump overnight. He seems to be fine with this new formula and the new medicines are helping, we think. By this, I mean that I can now lay him down while he is awake and getting food through the pump and he doesn't puke. This was not happening before coming into the hospital.
So there's a couple things going on right now.
One: he is still getting used to two medicines that help his digestion (to put it briefly). They are reconfiguring the schedule of when he gets what medicines in order to make it easier for me when we get home. Reworking the timing of his meds might throw him off some. We're not sure.
Two: we need to see a couple more days of good weight gain and manageable pukes in order to not proceed with surgical procedures (being the j tube). It is possible that he continues to gain weight and puke less and maybe we go home early next week. However. We have not been able to find a way to get the formula he is currently on at home. So. He will be switched to a different formula (that we can be supplied with) on Saturday, provided things are still going well. This could be no big deal, or it could really throw him (which formula changes have done to him before). It could be something that prolongs our time here. I'm not sure.
Three: he is increasing the medicine that he is taking for his movements. He seems to be more relaxed during the day and is also sleeping better at night. My fear when sleepiness is a side effect is that he's going to get so drowsy that he's not as conscious of what goes on around him. It has been amazing to see it help him, but would you please continue to pray for God's hand over the medicines and Leo's body.
Four: Nana is here and Daddy came for the weekend! I (Charis) am so grateful that my mom can be with me more long term. Brad has been in Lancaster for the week because of work. We are back together again and preparing for next week.
So there's the couple of situations to pray for. Could you also pray for just stamina for all of us here? It's hard to not know when we're going home. It's tiring to hope for a good day and then have a bad day. A bad day is so discouraging. And it's hard to hold expectations loosely. And I'm sure I've said it a million times, but communication with all of the different people is a lot.
We are so thankful for:
A private room here
Weight gain and less pukes
Leo can be horizontal and receiving food from the tube and not puke (meaning he can be set down)
My mom coming. Jes visiting. Brad here (and also working hard for us). And Julie and Molly who came to be with me outside of the hospital room.
And please pray that we can go home soon. I'm scared to hope for it.
Something else God is putting on my heart. Let's pray that He is shown. Let's pray that people feel and see something different when they come into this hospital room. Let's pray for the Spirit to be at work. Let's pray for God's glory because it's worth it.
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