Friday, January 22, 2010

All is well with Annabel...


video
(You may need to mute the music on the blog)
Here is Annabel keeping the beat with a little stuffed valentine puppy. I am not sure the quality of the video as it seems very grainy on my computer.

Today was Annabel's first day back at school. She has been feeling better day by day since her surgery. Yesterday was our visit to her neurosurgeon and he basically released her. She will not begin Physical Therapy as of yet, but she may return to school and speech therapy.

To say that I am amazed by all that has taken place in the past two week is an understatement. When Dr. J told us that she needed this surgery for a tethered cord he had two MRI's to back this up. A fairly drastic curve in her spine in a relatively short period of time. But he was honest about the results of the surgery not being a high percentage. One thing was certain that this little girl was in a lot of pain and had been for a while concerning her spine. Because Annabel has several health issue aside and stemming from Trisomy 18, he felt there was a good chance that some of these problems could be helped. From the very beginning I had much faith in Dr. J. He never questioned her diagnosis. I have come to believe that the younger doctors have a more open outlook/opinion concerning Trisomy 18. A few of the issue that could be improved would be her oxygen(due to her left lung being compressed with the curve), improvement to her neurogenic bladder/bowel, her overall discomfort. When Dr. J came to consult with us right after the surgery, he said she did extremely well with her sedation and he felt well with the surgery but that time would tell if it would be successful and how successful it would be. Due to her GI issue that occured right after surgery it was hard to tell, but we were lucky to get a GI consult and a new take on her GI issues. More on that later. With each day Annabel's soreness decrease. She has been so happy and much more comfortable. She has been scooting on her back, arching her back and really moving her legs in ways she didn't prior to the surgery. In the hospital right after surgery, they wanted to allow her to urinate, the immediately ultrasound her bladder, then I had to cath to confirm her residuals. At this point I was disappointed as to her residual were still in between 120-200cc. With each passing day we have seen more wet diapers and residuals becoming less and less. Ideally her urologist wanted them to be less than 30cc which was never for Annabel. In the last two day they have been less than 30cc and today I only felt the need to cath her one time. Also concerning her bowels, she was on two adult doses of Miralax daily and struggling to get this amount to move her. At this point we are down to 1/4 of this dose daily and this is producing 2 -3 BM's daily. She doesn't strain at all for either urinating or bowel movements. She doesn't draw herself up in pain ever, as this was happening each time someone tried to pick her up prior to surgery. She is still needing oxygen during sleep but much less spell of alarming. It has only been two weeks today, but according to Dr. J his words are that he really cannot be happier that what is happening post surgery at this point. Her sleep has also improved to almost 12 hours with continuous sleep. She will wake if she has a wet or dirty diaper at night and also if she can't reach her pacifier. But she returns to sleep. She wakes with a smile that rarely leaves her face the entire day unless she is in deep thought, watching her movie or sleepy.

With the GI consult prior to discharge we had two fresh new residents/fellows consult with her over the abnormal KUB done on Sunday before being discharged on Monday. They listening patiently to her history. They commented on the amount of air/gas that filled her tummy once again almost continuously since her surgery in June. I had told them about her drastic decrease in oral intake(baby food) and that her abdomen was almost always distended and tight, feeling and sounding like a empty drum. After reviewing the testing that was done while in the hospital he suggested that he didn't think she was able to process the sugars in her foods or the breastmilk, pediasure or any of her past feeds. He said her feedings were fermenting and basically rotting in her tummy. He wanted her off all oral feedings until a swallow study could be done and wanted her on Pediatric Compleat. This is meats, veggies, fruits etc. that has been processed into formula. She has ( 4), 40z.feedings a day, with continuous feeds from 8 p.m. til 8 a.m. at 43 ml. per hour. This gives her right at 1000 calories daily. Not one day has her tummy been distended or made all her alien noises. The only time was when I was eating and I felt so bad that maybe she was wondering why I wasn't feeding her so I gave her her pudding. I paid the price that night with her being very uncomfortable and a distended belly. Only time will tell if this is what Annabel needs but we have not seen her this happy in quite a while. Also in just two weeks ( counting surgery, being npo, and restricted feedings after surgery she has gained 1 lb. and 4 oz. I don't think she has ever gained this much weight in 6 months. At this point I am thankful to God for the success of her being put to sleep and waking from the surgery successfully, thankful for the anesthesiologist Dr. T who again agreed to watch so closely over her sedation and recovery. To Dr. J for seeing that Annabel was worthy of this surgery and being there each and every day after the surgery, for the surgeon that came in and were patient and attentive to her GI issues. To the GI consults who came in and listen and suggested this new eating plan. To all who prayed and keep up with her with words of encouragement. Thanking God that for now we have our happy, smiling, clapping and strong Annabel back. Just some pics of her day 2 weeks post surgery....

The Many Faces of Annbael





What I like most about her chair...her sweet name Annabel

Tuesday, January 19, 2010

A MUST READ....

This family wanted "a child like this!"


A friend of mine in Canada had a baby with trisomy 13. Like trisomy 18, this condition can be very grim but baby Annie was a miracle. She didn't have the common brain and heart defects and she could see and hear. Annie's parents wanted to provide medical treatment and give her a chance as long as it wouldn't cause her to suffer.

Something went very wrong with Annie's medical care. She died shortly after arrival at the children's hospital at the age of 80 days. A DNR order was placed without informed consent. There are missing records and missing narcotics. Annie's parents don't even know why she had respiratory distress. Neither do the doctors.

Annie's mom, Barb Farlow, has spent four years seeking answers, change and trying to bring awareness to the medical community about the value and purpose of each special child with trisomy 13 and 18. A philosophy professor heard about the situation and started a group called Justice for Annie on facebook. The support of the group will help the family obtain missing records that the Coroner and hospital are withholding. If you are a member of Facebook, they would really appreciate your support. It seems that there is a big cover-up involved.

Annie's mom was told after Annie died that one of the doctors involved in her care asked the others, "Who would want a child like that anyways?"

Annie's site is www.anniefarlow.com
You can also read more on facebook and please join "Justice for Annie"

Yesterday, a blogger with a child with an acquired severe disability took the challenge of answering that question quite beautifully.

http://severedisabilitykid.blogspot.com/2010/01/who-would-want-child-like-that.html

Dear Doctor:

Who would want a child "like that"? A person who wants to learn about love. A person who wants to know about self-sacrifice. A person who wants to know more about the value of life, who wants to move beyond the understanding of owning stuff to the understanding of giving and emptying of the self.

Who wants child "like that"? A person who is connected, a person who wants a challenge, a person who wants to face hell and own heaven right here, right now. A person who wants to grow and change and learn to navigate the waters of joy and despair, of choices deep and dark and profound.

Who wants one "like that"? Someone strong who wants to learn about weakness. Someone weak who wants to learn about strength. A person who wants to change the whole world, a person who wants to change one child's world. A person who wants to cry hard and laugh harder. A person who wants to drink deeply from what is sometimes bitter, sometimes sweet.

In short, who wants a child "like that"? A parent wants a child like that...their child...and they want to have every chance to do their job well. They deserve every support medical and social, emotional and financial that it takes to bring "that child's" life to fruition, to bring "that child's" gifts to the world into which "that child", for whatever reason, chose to enter.

Who are you to question the life of a child "like that"?