August 15, 2012

Getting closer

This coming Sunday Segev will be admitted into Hospital for surgery. Many children have a tracheotomy, though it is not often planned as a permanent installation as is the case here. The Hospital's protocol calls for seven days in pediatric intensive care: I've chosen a hospital that Segev was in before because the PICU is top notch in my opinion. The wards are a nightmare for such a medically fragile child as my son ( you may recall his previous stay there from Jan-Feb. last year which nearly ended up costing him his life) but hopefully things will be different this time. The hospital is also relatively close to my home which will make things easier as I switch out shifts with his mother. How long those shifts will be is something left to be determined on site though my estimation is 24 hours. While it would be possible to do more theoretically, when I am watching Segev, I do so without sleep or perhaps a few 15 minute cat naps here and there so this precludes me from staying longer.

I am not thinking at all about the challenges that lie ahead because they are beyond my control. I know in my heart that Segev must have this operation in order to grant him some more time on this earth. In the long run it will allow him to breath with less effort and is probably something I should have done sooner. Had I felt he was strong enough to successfully survive the operation, including post operative complications, I would have done so. It is what it is. We make these decisions all the time, not knowing the future, whether the risks outweigh the benefits, whether complication will arise that see us regret making them.

Interestingly enough this blog, even nothing new is posted, still gets dozens of hits every day because of the single entry (and photo) on tracheostomy surgery from a year and a half ago. Many kids have a trach, I even know a few, mostly with success stories, one that I met personally in hospital last year with some horror stories. Just as was the case with the gastrostomy surgery, to place a feeding tube permanently in Segev's stomach, it will significantly change our lives in the way that we care for Segev on a day to day basis. Changing his diapers can be too much for one person when he is thrashing about from agitation or seizures so there is definitely room for worry but I'm not thinking about that, which actually causes me to berate myself.

When the gastrostomy tube was placed in 2004 they tried to do it laparoscopically but the influx of air collapsed his lung so it became an open surgery. Due to this adhesions formed in his intestines and a year later his intestines became blocked and burst open in three places, necessitating life saving surgery where they cut part of the intestines away (the ileum where vit. B12 absorption takes place).  To be accurate the intestines burst while we were in hospital, the surgeons unclear as to diagnosis and ended up waiting too long. I was told they lost Segev twice on the table and that they needed to supplement an amount of blood equal to what an adult has to keep him alive. Still, when we arrived immediately after the surgery to PICU (in the hospital where we will be going now) he was in hypovolemic shock and they worked long and hard to stabilize him.

I will never forget the ride in the ambulance that day from one hospital to the next, watching the attending physician manually pump air into Segev's chest so that he would breath. 'Just a bump in the road could end all this' I thought, rather irrationally. But back then, during the surgery I remember feeling that in the end it would be alright. Some might call this wishful thinking. With so many years experience I have come to know my reactions and trust in intuition, listening to it with a stern discipline, to this inner voice and that is what allowed me to remain calm.

I have a decent feeling about this operation as well. There may be some hiccoughs but all in all I expect things to go smoothly.  Will be keeping people updated here and on facebook, as per usual.

Yesterday i took Segev to do a chest xray. What I see there (but I am not an expert) is a bit disturbing but I will wait to consult with the experts in hospital on Sunday and see if it changes anything. In the mean time Segev has returned to vomiting when he coughs, which is not helpful as it can easily lead to aspiration pneumonia. So we are hoping for the best, as they say.


  1. I hope everything goes well. ((()))

  2. I will be joining many other readers, I'm sure, in keeping you and Segev in mind this Sunday.

  3. 'tis going to be OK, I have that feeling; just as a safety net will have many white lights burning and sending positive energy!!!!

  4. I know what you mean about the intuition. I have always had the same feelings with Royce and they have proved accurate. I will be thinking about you both over the coming days. Your resilience to ride this will as usual get you through - even though you don't seem like you will get any rest. I can understand your need to stay with him. I hope your mind can remain calm. I'm sure all your readers and friends will look forward to Segev's progress reports. We will be waiting and thinking of you.

  5. Will be praying for you and Segev. You are right about trusting your intuition, caring for a medically fragile child fine tunes your gut feeling, you are wise to follow it. God bless.