Well, to say that the month of December has been or will continue to be boring would be a lie!!
Since, the last episode of pneumonia. Zach came down with bronchitis and a double ear infection. He was on antibiotics and doing better. However, the week before we all went on WINTER BREAK he was having a difficult time sleeping, was having seizures and pulling at his tube. If....he (we) was able to get three hours of sleep that was amazing. Saturday, December 20th, he wasn't looking great and spiked a high fever after nap. So, I did my usually routine and went into ER in Walnut Creek.
Once we were into Walnut Creek his tube actually came out entirely. He has had the tube clogged, twisted, but never completely out! In that case they decided they "didn't want to touch him" so Santa Clara came to pick us up and transport us at 10:30 at night to their Pediatric Department. His blood cell counts were high and he had a high fever (due to tube infection). After a few dosages of IV antibiotics he was able to get his tube replaced on Monday. The tube replacement went well and he was suppose to go home that night. However, nothing is that simple for Zach!
Zachary's weight gain has been non existent! He hasn't gained weight for several months. It doesn't really have anything to do with his surgery. His body has had trouble since birth processing and gaining weight--this is NOTHING NEW!!! He has had problems gaining weight since birth. His doctors have tired various ways to help him gain weight and tolerate food, but with really no success. Yes, he has gained small amounts of weight, and that is because of the tube. The bottom line is simple--Zach is getting nutrients in through his tube, but his body just doesn't know what to do with them. If he can't eat by mouth then they try the stomach/intestine---but he has two problems 1. he isn't able to tolerate the right amount to grow/maintain weight 2. even if his body could handle it--it doesn't know what to do with the food.
With all that said he is at risk of organ failure/stress due to the fact that he isn't gaining weight and supplying his body with the nutrients it needs. Which leaves us with where we are today---a PIC LINE (PICC). This is a central line that is "temporary" that will send his nutrients into his blood in order to help put on the weight. This is the last option in order to put nutrients into someone. He will have the line in his upper arm and it will be accessed at night in order to add additional nutrients in his body. He will get his weight checked in two weeks, and we will know if this is a success. If it is---we will continue this route until his organs and weight look stable. If not, then we will pull the PICC line out, and pray that his body decides to kick in.
I know that this is very hard for some people to grasp. "FEED HIM, GIVE HIM MORE, SEE OTHER DOCTORS....etc" are comments that Adam and I hear all the time. However, the point is simple--the doctors have done all they can. They have tried to avoid placing a PICC line due to the risks, but we have no other option to avoid organ failure and what that leads to. I hope that everyone that reads his blog will realize that we don't want to hear any more suggestions, criticisms, or critiques, but that everyone will be positive and help support us through this rough time. The PICC line is a huge step, and we need everyones prayers. Thanks to all who constantly give support and prayers.
We should be home on Wednesday if all goes well! If anyone knows of a nurse that needs a job--let us know....we are looking :-)
I will keep people posted as things progress.
2 comments:
You are always in my thoughts and prayers. I know this has been an extremely difficult and challenging situation for you and Adam, Garrett, and Dominic, as well as the rest of your family. I am proud of you for telling people to keep their criticisms to themselves. Until they walk in your shoes, they have no idea what you have been going through. The only thing you need is everyone's support. You and Adam are amazing parents. Don't let anyone tell you anything different. As always, I am here for you. Mary
None of us can say 'I know how you feel' because we Don't. I can't imagine how hard it is to see your child, and want to fix him, to JUST fix it, because that's what we do. That's the definition of parenting. But look at his smile. It tells all of us that you have made every hard,difficult decision in his best interest, not out of selfishness, but out of love.
In chronically Ill children the stress and divorce rate in this country was published as 85% in the late 90's, the burden to much. Zachary is so blessed to have been given to the two of you. I suport what ever you decide for your child, because you are there 24/7- I too agree, When I have walked a mile in your mocassins...
june
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