The story of our life!!! HOSPITALS. I think after everything settles down, I will hate hospitals. I don't like them already, at least, I don't like being in them. I appreciate them and the wonderful, yet sometimes not so wonderful, doctors because they have saved my son's life over and over and over..... again.
We left the hospital again on Wednesday night, because they can't ever seem to have the paper work done by the time I arrive. I even take my time because I know they will take their sweet time and I don't really have any reason to be there early. So anyway, we got JW home on Wednesday night. He did great Thursday and Friday and then on Saturday he started having one of his choking spells, where he cannot exchange any air in or out of his lungs. He basically chokes on his secretions. So, Saturday we ended up racking up some more miles on the AirLife helicopter. This time was different.
So we have been faced with these 'difficult' decisions about which I promised I would elaborate on at a further date in time. Well, I guess, now is the time.
In talking with the doctors after JW had been in the hospital every single month since November 2009, we came to the conclusion, we had to do something different, something else other than what we were doing because it obviously was not working.
We had a couple of options: #1 put a trach (tracheotomy) in to help him have a clear-er airway to breath and possibly prevent some of the hospitalizations. #2 Do not put a trach in and walk in a slightly different way than we have been. So, we looked at all of the options, we talked with doctors, A LOT of doctors, and came to a conclusion. JW has severe scoliosis, not only is his spine curved in more than one direction, his rib cage has shifted, or rotated so pressure is being put on his left lung causing it to barely be able to function, if at all. Because of the severity of this, there is no way, surgically or otherwise to fix it. It will only get worse. He basically works hard for every breath he takes. Breathing takes a lot of calories and energy for him to do, so there is not a lot of extra energy to help him grow. We have seen a slow or almost halt in his growth due to that reason. Also with all of the horrific events we have encountered over the last 9 months, he has had more injury to his brain. With each illness that may cause lack of oxygen, his brain gets injured also. There is definitely more to the story, but that basically sums it up. We don't see a long term benefit to the trach besides being on a ventilator that breathes for him, but that is not what I feel led to do for my son. We have elected to not intubate in the event of an emergency so his life will most likely be shortened by avoiding the traumatic events that his poor weak body would otherwise incur. I have prayed and prayed over this decision and I feel this is the direction in which God is leading me. I am at peace within myself with this decision and believe it to be the right one for JW and our family. I also feel that whatever happens is God's will and is His hands. Now having discussed the hard decisions we have made, on to this emergency on Saturday. I praise the Lord and thank him so much and everyone who has been praying for JW. I sent JW on the helicopter with a paper that says "do not resuscitate" along with some other fine print. I did not know what was going to happen but the Lord was with me and him as I sent him with the EMS team. We got a phone call that he made it to the hospital and was doing ok. I was not allowed to fly with him this time. We arrived and to my surprise, he was doing great! The little guy made it through, I was amazed and thankful because normally he would have been put on a ventilator almost immediately. Now we are a few days in to this hospital stay and he is doing wonderfully, weaning down off of the oxygen to his normal regimen. Hopefully, he will be coming home soon! AMEN!! My grandmother never liked the name James, I don't think I have ever blogged on his name, but after he was born and taken to Santa Rosa's NICU in San Antonio, we were filling out his paper work for birth certificate and such and Wacy was coming up with names that I DID NOT want for sure. He finally came up with something that I was agreeable to and at that point I was in so much pain and just wanted to sleep, I didn't really care what we named him, but I am glad we named him what we did. So back to my grandmother, my Nana, she has I said before, doesn't really like his name but not much she could do about it but call him whatever she wanted. She says that we ought to call him Will, because he has such a strong will. I agree with her on the strong will part but I am kinda partial to JW now.
Last but not least: Because of the recent changes to his plan of care, I am planning a birthday celebration on August 21st. We are celebrating the wonderful gift God has given to me and our family, since we don't know what He has in store for our future, we are hosting this party a little bit earlier than his birthday which is on Sept. 16., one day after the best girlfriend in the world's birthday. We won't discuss that one, it's a BIG one.
I would love for anyone to come and celebrate with us on
August 21, 2010 at 3pm at our house in Uvalde.
I ask that you PLEASE do not come if you or your children are sick. Sorry but we are extremely germaphobic, considering. Email me for further details at firstname.lastname@example.org.
Lord willing, we will be having a celebration for this beautiful baby: