August 19, 2012

First day in hospital -not quite

The day is about half over and Segev is back home. The surgery will apparently go ahead as scheduled, Tuesday morning but since both the admission and two consultations, one with the pulmonary specialist and one with the anesthesiologist, were taken care of we will either return monday evening or tuesday morning, depending on the exact time of the surgery.

The start of the day was not exactly auspicious as there was a great deal to organize that can only be done at the last minute due to Segev's expansive collection of equipment and medications that he uses continually. So we were late getting out. "We" were Segev's brother and sister, mother and me and of course Segev himself who has been having decidedly more seizures over the last week. They are mild, where he cries out, almost in jubilation, throwing his arms in every direction all at once, necessitating quick intervention to avert damage, face scratching and bruises.

Once past the security checkpoint there was a very large private ambulance blocking the driveway to the entrance of the children's hospital.  I drove a bit past him to see what was the hold up but there was nothing blocking his way so I backed up again and beeped him to let him know I needed to pass. Nothing. Perhaps the driver isn't inside, I thought. So I got out, in the mean time other cars backing up behind me and talked to the driver. He pointed to the space between his massive vehicle and the wall, about one meter width and said I had plenty of space to pass. "With my van?" I asked incredulously. "Not my problem" he said. Then I simply told him that he is moving his van because he is preventing my son from being admitted into hospital and indeed he began to back up to clear the space. Unfortunately now I couldn't move back out of his way due to the build up of cars behind me, although the first car had plenty of space to move so I motioned to him to back up a little but he began waving his arms and shouting.
I again got out and walked over to him, explaining the situation. "Why are you blocking the way?" he shouted. Trying a different description I explained that I didn't plant the ambulance there to stop traffic and that in order for him to continue on his way he was going to have to back up. He wasn't convinced. Not. Budging.  "You really want to argue with me about this?" I asked him. "Yes", came the reply. I shouted a bit at him about the wheelchair, my son having an operation and turned my back on him to walk to my car. He backed up....

It was a very long walk to the ENT outpatient clinic to be admitted. A long wait to speak to the doctor which only came about because I insisted Segev couldn't wait for long periods. Conveniently Segev had decided to play along and his oxygen levels started to drop off. In the commotion his oxygen bottle had stayed in the car so over the next few hours we were taking turns giving extended physiotherapy to try and get him back up to normal levels. It would have been easier to retrieve the bottle from the far-removed car but then you aren't doing anything to correct the cause, which could either be a mucus plug or closure of his left lung or a combination of the two. One you can do something about, the other nearly nothing.

A lot of questions were answered and it was here that I felt the first opportunity lay to show the chest x-ray that I had the foresight to have made, trying to cover as many trouble areas as possible. On this x-ray, as you can see in the previous post, I saw something which, if I was correct could alter the course of the surgery. There I saw a large loop of bowel protruding upwards where the stomach should be, pushing the diaphragm muscle into the lung. This could explain the pains Segev has in his stomach, the constant need for venting and the difficulty of his left lung in remaining open.
The surgeon looked at the picture and said, "I think your right". I would much have preferred to hear, "sorry chump, you got it all wrong". At my behest he called the chief pediatric gastoenterologist whom knows me and Segev well and with whom I've had a good, if patience-testing, relationship. He wanted the anesthesiologist to have say in the matter and felt his department wouldn't do any kind of procedure to correct it(?!). So we went off to the pediatric surgery department, everyone and bags and bags of necessities in tow, up and down elevators and through long hot corridors. We needed to draw blood from Segev as there was no opportunity to do it beforehand but I was required to go to the emergency department  where surgical admissions are handled and get me some of those white hospital file labels. Without the white labels, no blood test. Our orange hospital labels will do us no good, I am told. This only takes me about twenty five minutes of waiting while the receptionist with tries to explain in English to a woman what she needs to do now after her baby has been born. The problem is that she has no real control over the English language and is therefore contradicting herself. 
"So, I take this letter and ask for the form before or after I pick up my baby?"
"Yes, you don't go first for the form", she answers.
"When should I do this, is tomorrow OK?"
"No, you can do it any day some week."

Blood is drawn and comes out simply and evenly, even though every single other time it's ever been taken we have had to literally milk his veins drop by drop.
Then it is decided we would first see the anesthesiologist and then the pulmonary doctor. The anesthesiologist didn't seem terribly impressed with Segev's bouts of central apnea, hypothermia or bradycardia. He felt that Segev's altered anatomy due to his monstrous kyphosis, lack of neck stability and difficulty breathing with his head tilted backwards had no impact on the surgery. What about the bowel protruding into the lung? What do you have to say about that? "Let the pulmonary doctor decide on that one." He said, even deferring a look at the lung x ray.

Back to the surgical unit to wait for the pulmonary specialist. Bags and bags in tow, children in tow, up and down in elevators, through long hot corridors. Up and down ramps. Only the pulmonary doctor is not coming after all, we have to go to her. Guess where she is; halfway back to the ENT outpatient department. I stop multiple times on the way to perform chest compressions on Segev to get his oxygen back up but it is barely working. Even coughing with a good clearance of phlegm isn't helping. The opposite his levels are actually dropping, 87%, 84%. I bump into the physician half way there. She'll be with us in a few minutes. Her office is upstairs with no elevator so we have to wait outside at the bottom of the stairs. There is another clinic there on the ground floor but if I wait there she might not know to find me. In any case, being nervous I prefer to wait at the bottom of the stairs in the shade. Segev is going a bit wild, shouting and throwing his arms around, the seizures simply aren't letting up. More physiotherapy. I put my ear to his chest to see if his left lung is closed and a concerned nurse happening by stops and asks if everything is alright. 
"All things considered, yes", I respond.
After about twenty minutes the physician comes and we start the examination but she is unable to come to a conclusion because I didn't bring any previous imaging of Segev's lungs. "Is his diaphragm paralyzed?" she wonders aloud. "I don't think so because he doesn't seem particularly stressed", she answers herself. In any case she says that a tracheotomy is usually done to a person who isn't healthy, otherwise why would he need such an operation. So she writes out her report stating that it is mostly based on my extensive knowledge of Segev and that his baseline, while on a downward curve, is not in the midst of an acute crisis.
What about the loop of bowel, protruding into his lung? "That's best left to the gastroenterologist", she says.

Back in the car I put Segev on oxygen but he needs 3 liters to come back up a bit. He finally quiets down and the level shoots back up. Something neurological then, perhaps connected to his wild hoots and hollers.
The doctors of course all take one look at Segev and begin probing, grabbing, pulling. Even when gentle, there is no foreplay. I try to head this off each time by talking to Segev and explaining that we need to check him, it will be over soon, it won't hurt or not for long and he's doing really great.

I'm a bit frazzled but at least at home and Segev is quiet. I'm concerned about the bowel loop but remember what one of the physicians said, "He's being doing alright by it up till now hasn't he?" and believe things will work out. Some rest is in order and perhaps a glass of wine.


  1. ((())) Sounds draining, emotionally and physically. I hope the surgery goes well Tuesday.

  2. When you go back with Segev,,,wear your Darth Vader costume and bring your light saber...the FORCE will be with you!!

  3. Maybe two glasses of wine...

  4. I definitely agree at least two glasses are required! Those sort of days take so much out of you. It's almost amusing how hospitals have this unique ability to send you all over the countryside without the slightest concern for the what's happening to your child in the process. I once had a hospital send me to another hospital across town which was one of the most stressful drives in my life because Royce was choking on phlegm. I was totally traumatized and on my own - all so wrong. I hope Segev is admitted easily when you return so that you can avoid all this carry-on when you get back there. Until then lay low and try not to worry. Easier said than done.

  5. A bottle, not required, but certainly deserved...

  6. I am exhausted and needing wine just reading this. I can only imagine how you must be feeling and this is only day one. Stay strong my friend, the hospital system will break you if you let it. Though I can't imagine for a second it will get to you. Thinking of you.