Well we are home and boy are we tired.
I finally decided after reviewing the facts on-line, with confidants, with other patients on the floow, with other people who have had spinal taps, with my own memories of having one and of course in conteplation with God that we were not going to do it on Allie. I had a sick feeling ever since they mentioned it and have not wanted it and no matter how hard I tried to conform to what they wanted, I could not go against myself and my belief in the wisdom of her body and my view of health care mainly because she was asymptomatic; not exhibiting any symptoms which would warrent a spinal tap. If she ever does we will take her to our local emergency room where she can have one done - don;t believe it will ever be necessary. Anyhow my decision did not go well with the pediatric neurologist who promptly said he thought we should seek a second opinion from some other group and basically said since we did not listen to him on this issue that we were dismissed - boo hoo. Wow I have never met a group with bigger or more fragile egos. It seems that if you question or do not immediatley comply that you are labeled as non compliant and dismissed. Actually I can understand and have no hard feeling I am just dazed and confused by the way these guys never sat down with us and explained their thought process, where they thought they were going, what their rational was and what they were going to do it what they had origionall thought did not pan out. Then they had the gall to tell me that I was not doing the right thing by my child when I refused to physically restrain her twice a day, causing her huge amounts of physcological stress which may be the cause of her problem just to give her shots in the stomach at $3,500 a month. Brutal especially because they could not answer my questions as to why they chose that medication and why they immediately chose a six month course of action when there was no visible evidence of stroke and before they got the lab results of her blood back from the Mayo clinic, a week or two maybe but six month? This I thought was an extremely lucid and rational line of questioning yet was taken as being a trouble maker. Call me protective but hey if you have never tried to give a 17 year old tbi patient who has been shot in the stomach 10 or so times already another one and you are not a doctor/nurse figure in a controlled enviromnet with other nurse/doctor figures standing by to help, let me know - to think this can happen is beyond comprehension and then to say to me that hey sometimes parents have to do things to their children for their own benefit is callous and insensative and the remarks of someone who has never done it. Remember, walk a mile in my moccasins.
Anyhow our departure was much like that of Felix Unger, Dah dun da duh da duuuuh, da da da da da daaaa daaaah on September first, Steve Cagen was asked to leave Greenville hospital and to never return, that request came from his pediatric neurologist. A little nostalgic humor for those of you old enough to remember it.
Well we are home and happy and while not worried are ever vigilant to Allie and her condition. We talked (or she did) on the ride home and had a good time. We will be checking her temp. everyday a few times to create a baseline we can moniter. We know a fever is always present with any type of infection, something she has not had (asymptomatic). She is upbeat and so happy to be back in her own bed. She has just taken a bath and we have requested that she not shower for a few weeks since that was when we noticed the episodes would come on.
All in all we are OK with everything and looking forward to getting back on the Full Recovery band wagon. I can not remember who gave me the book The Monk who Sold his Ferrari but thank you, I am really enjoying it and Allie thinks the title is funny.
So with grateful hearts we head off to bed knowing that everything is once again OK and our family is all at home together. I would like to thank my sister Roni for coming up - you came for a visit but got an adventure. I am glad you are home safely.
To everyone reading - God bless and good night.
Allie's Dad
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6 comments:
I am so proud of all of you - you chose to do the hard thing and do what you truly feel is the best thing for your child. I understand when you question doctors and don't feel like you are getting answers - lots of times you feel like they are trying to lose you in conversation so that they can get what they inevitably want...my prayer is that Allie will continue to thrive following this decision to listen to your heart and you will show those doctors that you knew best after all. I did once when mine was in the hospital - I showed them I was right! :o) We know our babies and we believe what our ever-loving God tells us we should do whether we hear it through others, through gut-feelings or even through our hearts. Continuing prayers and much love from OKC! :o)
Dear Steve, Nancy, Allie and Matt,
Whew - glad to hear that you are all home again. Sounds like you made a very good decision to bring Allie home. You and Nancy are so attuned to Allie and that's the best care she needs right now. Hope you have a beautiful Sunday.
Love, Clare and Kim
Dear Steve and Nancy,
You are so wise to follow that "still small voice" inside of you!!! About 20 years ago my 8 year old daughter was having some urinary problems and the doctors wanted to do some IVP x-rays of her bladder, Kidneys and ureters. The appointment was made... I felt uncomfortable about it (I had been thru IVPs for kidney stones, so I knew what she would experience). I had this "nagging feeling" that we should not do this. I kept thinking about it, but then began praying about it and the day before the procedure was to take place... I canceled her appointment. Two days later the newspaper headlines were about an 8 year old little girl who had an appointment for an IVP just one hour after my daughter would have had hers. The child had an allergic reaction to the iodine dye that they use in the IVP and she had a heart attack AND DIED!!!!
God had been telling me NOT to do that with my daughter... If I had not done what I felt God was leading me to do, it could have been my child, just one hour earlier.
YOU are Allie's best advocate. You are her protector and example of how to live your life. Sometimes it is hard. Some doctors seem to forget that they are there for guidance and suggestions. YOU have the ultimate control and decision for what is best for your child and as long as you follow God's direction you can't go wrong.
Be strong. God is behind you and so are we. Thank you for continuing this blog site. I know I had told you that I had been worried about how "down" you had been for several days, but if you stopped the blog, how we we know that you need our prayers even more than normal. God places "Prayer Warriors" in your lives for a reason. Please let us continue.
We love you and are only a phone call away.
Hello, Steve and Family-
Good for you for staying your ground on the un-substantiated medical decisions regarding Allie's care. You know your daughter better (especially now)than anyone- including the doctors. Sad to hear about the strange behavior of the staff, I've never heard of that happening here (Seattle)- pretty unbelievable! You may be onto something with the shower and seizures, maybe it has something to do with the temperature of the water. I have been praying for your family for months. I read the blogs daily, and wish you all the best.
Sincerely, Laureen V.
Hey tell me to mind my own business but are those shots supposed to be for thinning Allie's blood? (I know the results haven't come in but please bear with me)
If so, they ARE able to give them in the upper arm - that's where I had them when I was in hospital recently having surgery (anyone over a certain age ?40 gets them routinely here) I asked why not the stomach as before and was told it was an either or thing, some doctors liked the arm and some the stomach!! So IF you have to go this route perhaps Allie's arm might be more acceptable to her? Just a thought.
Love to you all,
Susan, Scotland
You know what is best for your daughter and you did it. Some doctors try to "play GOD" and they should not do that. Thank God that Allie has you and Nancy to look out for her!! That a doctor would tell someone never to return to a hosptial is dispicable!! It is all because of his ego!! You did the right thing removing her from there!
There are people all over the world praying for Allie, I know you mentioned stopping the blog a few posts ago, please don't do that! I along with everyone else is following Allie's progress and praying for her to reach Full Recovery! We want to know what is going on so we can continue to pray and ultimately celebrate with you! I admire you for your strength, dedication and faith! You inspire others!! Know that when you are down you have every right to be but you are not alone you have God and all of us! We will bring back to where you need to be in order to help Allie!! Hang in there! You have a wonderful family and a world of people supporting you!
P.S. I am a fly baby and learned of your situation from Fly Lady
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