Hey, Christine,
Very sorry to hear Emily is having some "issues." You're right, it's not fair. Sometimes I try to be fairly hard nosed about that and say, life is not fair, get over it and get on with it. You just have to deal with whatever you're dealt. But that doesn't seem either appropriate nor very helpful just now.
I've felt like we almost lived at CHOP for the first couple of years with Charlie. It's gotten a lot better, but we still visit there frequently. It's a very good place, not a place you'd like to have any reason to visit, but when you do, it's good that it's there. Were there for a couple of rather non-informative hearing tests last week, was on the phone to them yesterday about upcoming ABR test, and then made two appointments at the Princeton satellite office, ENT in Sept. and pulmonologist in Nov.
d**n and double d**n, we'll see what Proboards does with that! Emily is too pretty and sweet to have any serious issues. Let's all hope it's just some infantile spasms, I think lots of kids with Ds have those and move on and do just fine. And maybe your little bug just had a bug that bugged her, well that's a bit much.
Trusty Dr. Leshin has an essay that has some general info about seizures in Ds,
www.ds-health.com/epilepsy.htmI think he has a special, personal interest in that subject area.
Wish there was something I could do to help. If you can think of anything, please let me know. You've got my email, maybe both of them and a phone number or two. If you or Al just want to talk or want directions or tips about CHOP, send me a number, we've got unlimited weekend cell minutes.
'Course, that could be dangerous, talking to me. I often go on too long and sometimes say things I shouldn't. I might tell you about the second time I thought Charlie was going to die. First time was the first time I laid eyes on him, a very little, very blue, very still, not breathing, lump of baby (Apgars 1, 5, and 7). Second time was during one of our early trips to CHOP. Here's a long snip from something I wrote several years ago, some parts would need to be changed or corrected now:
<< I made the phone calls to schedule the appointments at CHOP, thinking maybe we could set up all three appointments for one day. It didn’t work out that way, but we still managed to minimize our trips to the far side of Philadelphia. Priority went to gastroenterology, and I was pleasantly surprised one morning to get a returned phone call direct for Dr. David Piccoli. We discussed Charlie’s conjugated hyperbilirubinemia and Dr. Harry’s concern; after he reviewed the history and lab reports, Dr. Piccoli decided to see Charlie as soon as possible. He also scheduled a DISIDA scan, a nuclear medicine procedure to test to see that the liver is excreting bile to the gall bladder, and another ultrasound exam. One of Charlie’s last ultrasounds before leaving NICU had found no abnormalities in liver and kidneys but had failed to “visualize” his gall bladder.
So, early on Tuesday morning Oct. 12 we packed Charlie up and hauled him to Philadelphia. Though I missed the expressway exit and had to loop back through heavy traffic, we got him to CHOP by the scheduled 8:30 a.m. appointment to have an IV put in for the DISIDA scan. Then we went with Charlie over to nuclear medicine where he was strapped to a board and placed under a machine that looked big enough to crush about 30 Charlies at a time. After he was in position, they put in the concoction through the IV. The results were that a little green, glowing silhouette of Charlie began forming on a computer screen. In just a few minutes, his liver and kidneys started showing up, fairly well defined, as brighter, tighter areas of green light. A normal, healthy baby would start showing a picture of a gall bladder within 20 to 40 minutes. The radioactive chemical concentrates in the liver and then, as the liver excretes bile, shows up in the gall bladder. After 50 minutes, Charlie still wasn’t making a picture of a gall bladder. This was one of the bad times for me.
I left the room, and Lynn and Charlie, and went downstairs and outside to have a cigarette. I was thinking that after all we had been through with the delivery and trisomy 21, and cataracts and NICU, now we were going to lose Charlie because he didn’t have a working liver. I didn’t really know the prognosis nor prospects, but I thought that Dr. Harry’s fear of progressive liver disease was being confirmed. The technicians were already talking about us bringing Charlie back the next day to check to see if there had been any liver activity within 24 hours. Though I didn’t know much, I did know that often little kids died when their livers failed to function, some of them dying after going through various hospitalizations, and procedures, and surgeries, including liver transplants. I wondered if a premature infant with Down syndrome could get on a liver transplant list. A lot of the fear, despair, and heartache I had been trying to deal with came flooding back with renewed force.
I find the question of whether Charlie should have been born, should he be alive, much more complex and confusing than I think it should be; and I find that complexity and confusion quite discomforting. On the one hand, I hold the opinion, and hold it fairly strongly, that Charlie should never have been born. Wise, cautious, prudent, prospective parents, mother over 35, father over 49, would have had amniocentesis not later than week 16 of the pregnancy. And, if the prenatal test showed Down syndrome or any other serious birth defect, they would have terminated the pregnancy by week 18, gone for the abortion. More than 90% of the people who get the trisomy 21 report from amnio do just that. So, if we had done the smart thing, Charlie would not have been born. On the other hand, I also feel quite strongly that, given the circumstances and chain of events that did actually occur as opposed to the hypothetical what could have been, Charlie is lucky to be alive and we are lucky to have him. I think it quite probable that if we had not picked up on the problems with the pregnancy by accidents and stumbling in to the choices and courses of action we took then Charlie would have been a stillbirth. More than half of trisomy 21 conceptions are lost in the second half of the pregnancy. The really tough question is what would we have done if we had received the amnio report three days before Charlie had to be delivered rather than three days after he was delivered. In any case, holding these thoughts and considerations in mind, balancing ideas and feelings that appear to be in conflict if not contradictory, about our little baby boy, makes me want to step back and leave it alone, let it be. If I really tried to work through all the issues, resolve all the tensions, I’m afraid I would find it too much to handle and would really lose it.
So, when it comes to a question of life and death, I have some problems with dealing with the question of life for Charlie. But I don’t have any of those problems when it comes to the question of Charlie’s death. Once he got here, no matter the route nor the circumstances, and was a viable, though somewhat defective, little human being, I thought we should do whatever we could to provide and care for him. And once we started doing that, holding him and feeding him, and as we got to know him, and he started showing some personality quite early on, we came to love him more and more. Sometimes it was still hard to look past the Down syndrome and see our beautiful little baby boy. But whenever there was some threat to his health or well being, it was easy to know what our true feelings were. The thought of Charlie wasting away to some lingering, meaningless death from progressive liver disease cleared up my thoughts and feelings real quick. Every particle of my being knew how much I would hate that and how much I loved my little boy.
After one cigarette I went into the MacDonald’s in the front of CHOP, got coffee and a bagel sandwich, ate half of the sandwich and saved half for Lynn, went back outside to finish the coffee and have another cigarette. Then I returned to my wife and baby, knowing that the hour for the first part of the DISIDA scan was just ending.
I got back to the nuclear medicine room just as they were finishing with the first round and preparing to get Charlie out from under the machine and unstrap him from the board. From there we were going for an ultrasound exam, then we could grab a quick lunch before bringing Charlie back at 1 p.m. to take some static pictures before going for our 2 p.m. appointment with Dr. Piccoli. This ultrasound did find Charlie’s gall bladder. It also did not show any abnormalities in the liver but noted that the kidneys lit up a little too bright too quickly, suggesting that they may have fought off some infection. After ultrasound we went to CHOP’s cafeteria, and all three had lunch, Charlie’s coming from a bottle. Then we returned to nuclear medicine for round two of the DISIDA scan.
The technicians, two attractive, pleasant, and cheerful young women, repositioned Charlie and cranked up their computers. As I was watching the screen I thought I saw a new little blob of green light that had not been there before. And I pointed this out to the technician, asking her if there was some new, different structure in that area. She shortly left the room but returned in just a few moments and, with a big grin and a shake of a clinched fist, said, “Yes! We have excretion.” She had gone to confirm with radiologist what appeared to be showing up on the screen. Though we probably didn’t appreciate the significance as much as the lab tech did, Lynn and I joined her in rejoicing that the test was showing some activity and were also glad to hear that we wouldn’t have to come back the next day. It had never occurred to me that I could be so happy and relieved by a blob of green light and a report of liver excretion. A bit later Dr. Piccoli would partially summarize Charlie’s DISIDA scan by remarking that the results of the test “kept him out of the operating room for this week.” >>
Oh, sorry so long. And one more thing I really shouldn't say, if you were to decide that Emily is just a bit too much for you to handle, Lynn would take her in a heartbeat. And sorry if I really have gone too far this time.
Best wishes for you and yours, especially Emily,
Bob
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