Joey was weaned to a flow of 2 today, and I have been trying to record his work of breathing daily to see how it improves. He has been naked for the past few days just so that I can see how hard he is working or not working. The goal is that he can be comfortable and not work too hard, and I hope with time and growth that he can continue to improve his respiratory status. I am actually praying that he will be able to breathe without oxygen support as he gets older and that he can get full functionality of his lungs. I believe God can do this. He had a set back with his breathing when he developed his cellulitis or skin infection around his gtube site. Yesterday when I cleaned the area, there was still green puss leaking from the site and it was still red and irritated looking. He was on day 5 of the antibiotic, so he has 5 more days of the stuff to go. His white blood cell count was much lower yesterday than from when he got the infection, so we know he's going in the right direction. He is taking the medication orally. Dr. Morris also said that once we got his breathing down to 1 liter of flow (which he is almost there), she will consult with surgery to remove the broviac line. Surgery was resistant to removing it, but I think Dr. Morris is pretty assertive and can get it done.
Joey was so playful yesterday. I pulled his mirror out for him and he spent some time looking at himself. Daniel has been playing with him by putting a toy in front of him so he can swat at-which makes him tired, but he enjoys it. Last night he found his thumb and started sucking on it.
The day before yesterday, I met a family who has a daughter on the fifth floor that got an infection in her foot, it moved to her blood stream, and the infection then caused a stroke in her brain. She is not showing brain activity according to the MRI. The doctors are going to do another MRI to see if anymore brain activity has occurred. Andy and I went and prayed for her and her family in her room, and it was so heavy. The sweet baby's name is Catherine, and I know this family would appreciate some prayers for miraculous healing. They have been so heavy on my heart. We also lost another friend, a teenager, this week that had to make a tough decision of removing himself off of life support. He was tired and ready to go home. I have been praying hard for his momma. This life at the NICU and at the children's hospital has been humbling and eye opening. I have a new perspective on life, death, gratitude, and every day that is given to us should never be taken for granted. Joy cannot be derived from just our immediate circumstances, because sometimes our circumstances just suck-to be frank. Joy comes from above and staying anchored in that fact. Someone asked me recently if it was therapeutic to walk these scary roads with these other families-it is in fact not therapeutic in the least. It's scary as hell in fact. I'm not looking for accolades and it doesn't give me the warm fuzzies to say the least for walking this road. Actually, it's a lot easier to dig my head in the sand and be ignorant and unaware of all the happenings going on in the hospital. God did not say that this life would be easy, as this hospital reminds me every day.
Joey was so playful yesterday. I pulled his mirror out for him and he spent some time looking at himself. Daniel has been playing with him by putting a toy in front of him so he can swat at-which makes him tired, but he enjoys it. Last night he found his thumb and started sucking on it.
The day before yesterday, I met a family who has a daughter on the fifth floor that got an infection in her foot, it moved to her blood stream, and the infection then caused a stroke in her brain. She is not showing brain activity according to the MRI. The doctors are going to do another MRI to see if anymore brain activity has occurred. Andy and I went and prayed for her and her family in her room, and it was so heavy. The sweet baby's name is Catherine, and I know this family would appreciate some prayers for miraculous healing. They have been so heavy on my heart. We also lost another friend, a teenager, this week that had to make a tough decision of removing himself off of life support. He was tired and ready to go home. I have been praying hard for his momma. This life at the NICU and at the children's hospital has been humbling and eye opening. I have a new perspective on life, death, gratitude, and every day that is given to us should never be taken for granted. Joy cannot be derived from just our immediate circumstances, because sometimes our circumstances just suck-to be frank. Joy comes from above and staying anchored in that fact. Someone asked me recently if it was therapeutic to walk these scary roads with these other families-it is in fact not therapeutic in the least. It's scary as hell in fact. I'm not looking for accolades and it doesn't give me the warm fuzzies to say the least for walking this road. Actually, it's a lot easier to dig my head in the sand and be ignorant and unaware of all the happenings going on in the hospital. God did not say that this life would be easy, as this hospital reminds me every day.
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