| Later updates | Aaron update 146 |
| Subject: Aaron update 146 Date: Thursday, May 27, 2004 11:43 AM From: Kevin Quick To: Aaron Update List We're back home, safe and sound. Before jumping back into my regular work, which has piled up a bit, I want to let you know how yesterday went. We went through a couple more heavy-duty things that I want to try to start processing in my own mind, so please forgive my plumbing another depth or two before coming up for air. I promise, though, that things are looking up, and this message will have a happy ending! :) Aaron's sleep study Wednesday night went well, despite it's rocky start. Aaron finally went to sleep, and he slept soundly for almost four hours. That was long enough to get some good, solid data. At 4:30 a.m. he woke up, panicking again because of the strange surroundings and all the tubes and wires taped to his face and body. We disconnected everything, and Aaron slept with me for the rest of the night. He sort of slept, anyway; it took an hour for him to calm down and stop doing his alligator rolls. But finally, he did go back to sleep. As Aaron quieted down, from across the PICU, I could hear Michael coughing. Michael had been in the room next to ours on Monday night. We moved to a different room on Tuesday, so we were then on opposite corners of the PICU. On Monday, we had gotten to know Michael's mom and Michael's story a little bit. Michael was 16 years old, and had been in the PICU for three weeks with pneumonia and heart problems. Michael's condition was critical, and his mom was very, very worried. Michael had been born two months prematurely, but his mom didn't think that that was what had caused his problems. While she was pregnant with Michael, she had worked in an auto body shop, and had inhaled a fair amount of paint fumes. This, she believes, was the primary cause of Michael's problems. Anyway, Michael's mom couldn't help but overhear Aaron screaming and crying as the doctors inserted his pH probe, took blood samples, etc. She felt empathy for Aaron, and gave him a little brown stuffed dog. It touched our hearts that this woman, who was suffering so much more than we were, would give this gift to Aaron. I know there's a lesson in that for us. Despite our lack of sleep, we got up at 7:00 and went to the Whitney Clinic. Aaron started out OK, but went downhill quickly, as he had had very little sleep and no food (he had to fast in preparation for the lung function test that he'd be having later in the day). But we plowed ahead. The child development specialist determined that Aaron is 2 months behind his corrected age developmentally, which concurs with what the psychologist in Sacramento said a couple of weeks ago, when we had the tests done for SSI. This is not bad; it's very good, actually for a very early preemie. The neurologist didn't see any signs of neurological damage, which was reassuring. The medical doctor that we met with wouldn't allow us relax into the idea that we don't need to worry so much about Aaron's low weight, much as we were asking her to. Oh well. We returned to the PICU, and Aaron was given a mild sedative in preparation for the lung function test. He was so exhausted that he quickly turned into a limp noodle. He didn't move at all during the test, so the test was very thorough and complete. While Aaron's lung function test was going on, more and more people were going in and out of Michael's room, often sobbing as they left. Throughout the afternoon, we learned that Michael's condition was deteriorating. His kidneys and liver were failing. Finally, he was on life support alone, and the family made the decision to let him go. He passed away shortly before we left to go home. I don't think I'll ever forget the sound of Michael's coughing early yesterday morning, nor the sight of four middle-aged men openly crying and holding each other out in the hallway later in the afternoon. This life can be unbearably unfair and depressing at times. I thank God for His promises to redeem that which is redeemable in this world, and I look forward to the new heaven and new earth that He has promised us, in which there will no longer be any mourning, nor outcry, nor pain. Only God can completely fix things like the pain that Michael's family is experiencing right now. If you think of it, please add a prayer to ours for Michael's family. OK, I promised that things would lighten up at the end of this message... After Aaron's lung function test, we met with Dr. Hardy, and had the most pleasant consultation that we'd ever had with her. The results of Aaron's sleep study and lung function test were conclusive: Aaron's lungs are doing great, and he does not need to go on supplemental oxygen. Praise God! His lungs are functioning better than they were last summer, when the initial tests were done; he's making good progress. Dr. Hardy did prescribe a mild steroid inhalant for Aaron, which we'll give to him once a day, which may help to speed up his lung development even more. We'll evaluate things again in 3 months. If Aaron's eating and growing increases markedly during that time, we'll continue the steroid. If not, we'll drop it. At any rate, Dr. Hardy said that the dosage of the steroid is extremely low, and there should be zero side effects from it. We came away from this meeting with Dr. Hardy feeling very good. Aaron's lungs are OK! Some weight was removed from our shoulders, and our spirits were lifted. As we packed up to go home, we became a little concerned because Aaron had thrown up a couple of times, and was a limp noodle again; the sedative hadn't quite worn off yet (it would take 24 hours for it to get completely out of his system). We brought Aaron to our nurse, who said that she'd never seen a child so limp! We had a doctor check Aaron out, and he gave us the OK for the 3-hour car trip, with frequent checks on Aaron. The trip went fine, and Aaron just melted into bed when we got home. He slept all night, and woke up this morning with a big smile on his face. He's still a little woozy this morning, but he's fine. We're expecting a call this morning from Laura, Dr. Perr's nurse practitioner, to let us know the official results of Aaron's reflux and gastric emptying tests, but she hasn't called yet, so we'll just have to be patient on those. We don't expect any really big news from those tests, at any rate. [Laura just called and gave us a detailed update. Aaron's reflux is in the normal range. So, we're taking him off of the Zantac. Yes! Last August, his stomach emptying was a slow 90 minutes (90 minutes to empty half of it's contents; we only tested for liquids in August); this week it was 75 minutes for liquids and 87 minutes for solids. So, he's making progress, but his stomach emptying is still slow. So, we'll continue on the Reglan.] We're going to be pursuing California's MRMIP ("Mister Mip", Major Risk Medical Insurance Program), and possibly getting it rolling as early as this afternoon or tomorrow. It's an insurance program that is designed to help people with preexisting conditions, that just can't get insurance any other way. It's a bit pricey, and it's yearly maximum expenditures are not too high, but so far, it looks as though it could be good for us for the next couple of years, until we can get Aaron onto our Blue Shield policy. It would cost about the same as Aaron's quarterly pulmonologist and gastroenterologist visits will, but would have the advantage of including insurance coverage for any bigger problems that might arise as well. So, we're more optimistic on the insurance situation now than we were a couple of days ago. OK, I think you've helped me process a good portion of the events of the last three days. Whew! Thank you for allowing me to "vent" through these updates, and thank you for your continued prayers and kind words. By the way, Robin was just wonderful the entire trip. She was a joy to have along. Her smiles and coos do a great job of melting my concerns away; what a sweet, sweet blessing she is. Here's a picture that I took just before we left for this trip last Sunday. I am indeed a very rich, blessed man. God bless each one of you, and have a great holiday weekend. Love, Kevin, Kathleen, Aaron and Robin |
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