Last night Dillon started on BiPAP and was taken down to CPAP today. Then his oxygen was taken from 2 LMP to 1LMP. They also started food again for him tonight. His heart rate went up a little, but nothing to major. Tomorrow they will probably "sprint" him. This means they will take him off of CPAP and just put him on oxygen for a few minutes at a time to see how he handles everything. They have put a patch behind his ear that is for motion sickness but has the side effect of drying up secretions. It seems to be helping so hopefully he will be ok without CPAP. He HAS to be on his back, which is the worse position for his secretions.
Tomorrow they are also planning to remove his epidural which has been working to keep him numb from the waist down. This was to keep the medication from effecting his lungs (breathing). Tomorrow when they take it out they will probably have to increase the other pain medications - which comes with the risk of depressing his respiration. Please pray he will be able to breathe with enough medication to manage his pain. Please pray for wisdom for Josiah and I in knowing if he is in pain and needs more medicine. The doctors/nurses are being great at asking us how we think he is doing since we know him best. It can be hard to tell with Dillon since he can't tell us and I don't want him to be in any more pain than necessary. I am praying God would give me extra wisdom in knowing exactly what Dillon needs or doesn't need.
Everyone at CHOP has been great so far this time. I took in note cards that explain what is and what is not seizures and so far everyone seems to be listening to us. This is a huge improvement! Please pray they would continue to listen to us - the LAST thing Dillon needs right now is to be drugged to a state of unconsciousness over something that is not a seizure!
The swelling in Dillon's left foot was doing a little better. It was finally warm again today instead of being ice cold. They are checking it every 4 hours with a Doppler to make sure they can hear the pulse in it. The nice thing about the brace over the cast is they have loosened some of the straps right now while he is swollen and they can make it tighter as the swelling decreases.
I am so afraid of the pain he might be in as he wakes up and is taken off more of the pain medicine. It breaks my heart to know he might be in horrible pain - and that I caused it. I handed him over to the doctors to cut his bones in half! But, Josiah keeps reminding me, he was in PAIN before the surgery. Every single day he was hurting and he was bruising himself on his wheelchair from pushing so hard against it. So my biggest prayer is that this will offer him some long term relief. I know the next 6 weeks are going to be hard but it will have been worth it if it helps him to not be in pain afterwards! I know he will probably have to have this surgery one or more times again in the future, but I am going to do everything I can to prolong the next surgery!
Thank you so much for praying for him. I believe he is surpassing everyone expectations due to prayer! God is helping my little man fight. Thank you!