There is quite a bit written on these pages about what a person like my son Segev means in context of our humanity. Most discussions about disability, especially catastrophic disability revolves around the compromised person's humanity. As though there can be such a question. Obviously, in my mind there can be none. The question for me is only the humanity we see when other people talk about, or try to relate to severely disabled individuals. I'm putting it nicely, since what is mostly happening is that people try to relegate disabled, not understand them. People, even lauded professor's, even ones employed by Princeton university, try to argue that they have no humanity. It is more than tedious to me that I actually feel the need to give rebuttal's, here on the blog, to such nincompoops. We shouldn't even have to talk about these issues and learn a thing or two about respect, but we do have to and the journey portrayed here, of Segev, represents a story that, while unspoken by most parents, finds its echo in multitudes of homes across the globe. These children have no voice of their own and we try to give them a voice. In telling their story, naturally a good part is taken up by speaking about how it affects us, the extreme caregiver.
Perhaps if there were more understanding about the requirements for providing such care, our lives would be a little easier.
This morning I took Segev (together with his mother since it is not possible to travel alone with Segev) to the clinic for bloodwork. His albumin was low in a previous test and he was bruising much too easily; a sign that the valproic acid he takes was adversely affecting him. The conundrum is that together with his other anit-epileptic medication (Lamotrigine, a successful but dangerous combination) his massive seizures were well controlled and he suffers only small to medium ones. As a result of the drop in Albumin (important in maintaining tissue integrity, such as blood vessels) I had to reduce the valproic acid. The expected happened and Segev recently began having many major seizures. Frothing at the mouth, turning blue, all that. I'm not certain yet how I will resolve this.
Blood tests can be done only until 10.00, after which they are sent off. Segev's morning routine is intense with much to do and must necessarily be interrupted in order to transport him to the clinic. In home service to draw blood is not an option since it is sub-contracted to a private company which sends any-old blood technician, whereas few specialists are actually successful in drawing blood from Segev's incredibly fragile veins.
Loading his wheelchair, getting him safely and comfortably settled into the car with his oxygen, suction and O2 meter, with the ever present danger of him vomiting during any stage of the transfer, makes for constant tension. Getting to the clinic in time, adds to this. He is with his mother this particular morning and when I arrived the first complication manifested itself: he wasn't breathing well at all. His oxygen dipped to 85% while on three liters. It took me some time to open his left lung and have him clear enough phlegm so that it bounced back high enough to consider taking him. Food has to be taken with us because his meal is a two hour affair. Despite having gotten his inhalation/nebulizer therapy his breathing was very raspy and his hands were twitching continually, indicating an exacerbation of his bronchiectasis (or a return of the pneumonnia he had for three weeks) was underway. I had to decide whether to continue with the planned trip to clinic or scuttle and start more intensive physio and extra nebulizer therapy.
Since there were several issues to discuss with the physician and the next opportunity would be three days later I opted to go ahead. There was no time for the cannabis inhalation and so with his level at 93%, we left.
Because the only timeslot available was later toward the end of the doctor's shift I had to wait for an opportunity in between patients to go in and tell her we were there for the blood test (which she has to perform, the blood technicians won't touch Segev). As always she would then prepare the referral and continue to see some of the children in the overflowing waiting room while the lab prepared needles, swabs and labeled test tubes. Segev's oxygen continued to dip and I continued to work on his chest with compressions, letting him sip water to try and get him to cough and reposition his jaw and neck to clear his airway. He needed to get his next bolus of food but it was impossible to know when the physician would come out to take blood and if his stomach is full, the screaming and body contortions can be a recipe for inciting vomiting, so I postponed his food. He was listless and agitated at the same time and now the oxygen started running low. The wait was long, but probably more so due to my irritation with being in an environment where I could not simply put him on his side on the couch and continue his treatment as needed. Once his schedule gets behind, the whole day and evening is spent trying to catch up since medications, food, therapy, bowel hygiene and so much more all has a time when it needs to be done. Thus the days often end at 01.00 or 02.00 in the morning, continues with treatment, turning and suctioning through the night and then, at the latest, starts again at 08.00 with medications and so on.
The blood draw went better than usual although it was apparent that one of the veins in his wrist, always a favorite for this procedure, had had its day and was now officially retired.
The oxygen finished and still I had to speak to the physician about an interim report to the health ministry on his use of the cannabis, fill prescriptions in the pharmacy and discuss authorization of the upcoming elective hospital stay with the office. Supplies had not yet been delivered but the urgency of getting Segev back home takes precedent and so after waiting a bit longer, we left.
Before putting Segev back into the van I had to again work on his chest in order to open the lung as well as cause him to cough and thankfully, as it is right on the street, there was little traffic to add to the cacophony of noise coming from his cough, my cursing the oxygen alarm, people talking and the chirping of the van warning me of an impending alarm going off if I didn't press the code soon.
Finally back at his mother's I fired off the list of things he needed to have done immediately: oxygen reinstated, inhalation therapy with 23% saline, vaseline on his dried lips, water in his mouth to cough, prepare cannabis inhalation, finish his food, eucalyptus on his chest and back, administer 10 drops homeopathy for the phlegm, heating the water bottle to warm his legs and feet.
Except for the food and eucalyptus I did all the rest and needed also to double check the oxygen condenser because his level was not rising and equipment failure has happened before. While checking the machine I could see that there were black spots of fungus in the tube. More physio therapy, together with the inhalation and finally he reached 95% on 3 liters.
Now I was ready to go home and eat some breakfast and receive a call from the social worker to the affect that she was going to try get some help for us (a conversation that has been ongoing for two years). The fact that I have tried to get help for fifteen years, without success, does not allow me to feel any particular jubilation in light of this latest attempt. Government officials have been personally contacted, high up and even highest up, without concrete results.
So the recognition of needs my son has, which I am having increasing difficulty meeting, appear just as far off as always.
But that, my friends, is a story for another time.