February 12, 2011

Good news?

I thought that i had slipped up. Segev's lungs were crystal clear after the first week in hospital thanks to aggressive inhalation therapy and antibiotics. But they put us in the 'stomach/lung virus room', where all the kids are coughing and vomiting and suffering diarrhea and guess what, that's not a bad way to get any or all of those viruses, in succession.
After the release Tuesday morning Segev was already cooking the stomach virus and with the inevitability of one of Claire's posts on culinary eroticism Segev was sick as hell with cyclical vomiting before I could even settle in at home. But it is not so easy with such a neurologically compromised child, determining whether it is a virus or degradation of his general condition which is responsible. 
Then came the release on Sunday, glorious Sunday. Now I started feeling the fatigue. Headaches became intolerable, I was feeling tired all the time, chills. Two days later Segev began vomiting again in earnest. By Wednesday night he couldn't keep 10 cc's of water down more than five minutes. He had a fever, which hadn't been present all the previous days in hospital, not even ten days prior to the hospitalization when he had the flu and was non-responsive for eight days. Yet when I took him to hospital the first time, he was not dehydrated and seemed to recover.
So the second virus, now established by tests to be RSV, caught sometime during the second half of the stay made him vomit, run a fever and become limp. 
So imagine my surprise when I take him to the ER after another sleepless night of administering to him and the doctors don't understand that I want them to help him. He doesn't need help, he needs some losec, they insist.  

The vomiting continues but this time the blood results come back without signs of medium severity dehydration. I insist that Segev is not 'right', that something is still lingering, perhaps irritation from the G-tube or any of many other possibilities and that some investigation should be done. One of the ER physicians whom had gotten to know Segev during the previous 12 days hospitalization happened to be there, had seen my dedication to Segev and agreed that if I felt he needed the stay in hospital that was sufficient reason.

Last night, the 24th day of not being well within the span of one month, was very difficult for Segev. As I arrived I ascertained his arm to be swollen from a defective iv placement necessitating its removal and placement of a new one. The long thick needle was pushed in but only a fishing expedition finally brought the desire result. I've lost count of the number of iv lines introduced, but it lies somewhere around ten.

His breathing was massively labored, the wheezing severe and his lungs obstructed to the point that when he coughed no air could be forced out, his face turning blue from the effort. Any cough also resulted in vomiting so once again he could not receive any food. I gave him his medication in moments of relative quiet, with little adherence to normal scheduling but still he vomited part of it.

He was very agitated and clicks and jerks of seizure activity was nearly a constant as he wrestled his way through the night. Oxygen had to be kept at 5 liters a minute in order to keep his saturation above 90%, a degree of compromised respiration which he has never seen before. His rapid breathing and racing pulse, soft rasping moans of pain and twitching finally relenting for short intervals of rest when I could quietly contemplate the origin and consequences of entering day 16 of this hospital stay. 

This morning the result of intensive therapy, both medical and physical, have borne fruit as he reacted a little, the fever has remained low and his breathing is more normal. Each time I lifted him up to a sitting position, leaning against me as I half sat, half stood to work on his chest and back with clapping and compression, the utter exhaustion of every fibre of his body was apparent not only by the dead weight he presented me with, like trying to hold on to an over heavy slippery bag of potatoes, but also in the very sound of my cupped hand rhythmically drumming which sounded, again, like hitting that heavy besotted bag. 

Unfortunately, having nights means taking a nap when returning home. The trip on Wednesday morning to ER meant pulling another '53' . Being awake Tuesday day, not sleeping that night, then leaving the hospital in the afternoon to take a one and a half hour nap, go back to the hospital and spend the night caring for Segev (oh those darkened corridors!) until the late morning. I have yet to break the three and a half hour mark for a nap and so for the last sixteen days plus have had to make due with up to those three and a half every twenty four hours.
Other than my children I have no family here which could come to my aid, which is the universal law of you reap what you sow?

Tomorrow morning I was supposed to fly to Holland, a ticket arranged through miles by my father, to be with my mother for three days. Over a month ago, with everyone pressing me to go, looking for ways to make it feasible, I worked out a schedule with the kids. They would miss school (my son is in his senior year), we established who would be on night shift duty at their mother's house to help with Segev, the workload was divided and promises made. Everyone was pushing for me to go. My mother said how much she was looking forward to seeing me (she has ALS) and I wanted to be there for her. 

The ticket, non-refundable, will go unused and perhaps there will be another opportunity some day. I have to say that I have been dreaming lately of going on trips, discovering new experiences, calm yet exciting views, something which has not appealed to me for years.
But the funny thing is that whenever I have had these fleeting images of going pop in to my head, whether remembered as a dream or spontaneous fantasy, I've always seen myself going together with Segev.


  1. Haunting -- my thoughts are with you.

  2. Interesting that you would dream of traveling. It makes perfect sense. The subconscious mind works that way. It is sad that you do not have family near you that can help you with Segev. No friends that are close to you that can help as well?

  3. ((())) My thoughts and well wishes remain with you and yours. I'm sorry you won't get to go visit your mother this time, but hope things will improve so that you may get to soon.

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  5. Praying for everyone's highest good to come about.

  6. Elizabeth thank you.
    Blogzilly- I have had offers closer to home but some things you just have to do yourself. I've had swallow my pride to ask for help and then regretted it as it came with conditions.
    Kwombles- isn't life supposed to get easier as we grow older?(sarcasm)
    and Claire...when you feel the ice breaking underneath your feet...you learn to call out for help or enter a dire world indeed. Your prayer is a reminder to me to always feel that positive aspect and cling to it, like friend to friend.