Thank you again for your continued support and prayers. Today has been a much better day.
Last night was really rough with basically no sleep for anyone. John's lungs picked up a lot more fluid on the trip up and breathing was really difficult. That coupled with the new environment, not having mom for a period of time, and everything also did not help with the breathing. In the middle of the night they switched his mask to more of a harness on his face, without telling him what they are doing. What a way to be woken up!!?! It freaked him out as it would anyone... which also affected breathing and heart rate.
However today has been much better. We made know that no one was to walk in without introducing themselves and announcing what they were to be doing! We think yesterday was an attack of the enemy to get us to leave or scare us, but we trust and know this is where John will be healed.
The Dr.'s here are on a team. By that I mean all invested departments communicate with one another. There is a succint plan to help John. Everyone since last night has had great bedside manner and treated all three of us with the utmost respect.
Today and tomorrow are primarily get to know John/testing days for the Dr.'s and from there they will beging to talk about what they see. All of them had a decent knowledge of the case when we spoke today as they have been tracking with us since before we decided to come here. That is so comforting and helpful.
Please continue to pray for John's breathing. Right now he is not getting enough oxygen without a mask. Therefore they have to keep him hooked up... the mask he needs now provides pressure to help push out fluids. However, that means it also provides pressure on his face. If he hated the normal mask, you can only imagine with this. Also, because his breathing is so low they will not let him eat. He's so hungry. He's a 14 year old boy for crying out loud. Please pray for his lungs to increase so we can let him eat and be comfortable!
Also, please pray for housing. The hospital has let me stay again tonight as we are on the waiting list at Ronald McDonald house but don't have a room yet. They have bath facilities here so we were able to shower and wash up. My prayer at this point is that they allow me to stay the whole time we're here. We found out today and Ronald McDonald house is not free - (I thought it was) but $20 a night. Which for one night is not bad at all... but for being here indefinitely is not really manageable. The room has so much space and a couch and recliner chair... so Mom and I are both comfy... Just pray they continue to let me stay.
Continue to pray for Mom and myself, as emotions run high in all of this and it's sometimes hard to deal with. We're fighting every day to keep John safe, and as comfortable as possible. Sometimes when there's a procedure that may hurt it becomes a really hard decision about what to do. So just pray for clarity and peace in all procedures.
Thank you!
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