| The NICU Experience | Aaron update 95 |
| Subject: Aaron update 95 Date: Tuesday, March 11, 2003 1:18 PM From: Kevin Quick To: Aaron Update List Aaron gained another 34 grams, so he’s at 2632 grams now, or 5.79 pounds. Kathleen said that Aaron is doing fine today, is feeding well, etc. We met with Aaron’s pulmonologist, Dr. Karen Hardy yesterday afternoon. Dr. Hardy reviewed with us that Aaron has chronic lung disease, as a result of his having been on the ventilator for several weeks after he was born. This chronic lung disease is inevitable, and is Aaron’s #1 medical challenge. The ventilator HAD to be used to keep Aaron alive, and using the ventilator always results in some damage to the lungs. So, Aaron has some scar tissue in his lungs, and he’s missing some of the cilia which normally bring bacteria and other foreign matter up and out of the lungs. Apparently the scar tissue will never disappear completely, but Aaron will eventually grow enough new lung tissue that the damaged parts of his lungs will be small in comparison with the healthy parts. Dr. Hardy was very adamant about one thing, which we already mentioned a couple of months ago: We CANNOT afford to have Aaron catch a cold during his first six months (and preferably during his first year) at home. His catching a cold over the next few months would be a major problem, and would inevitably result in Aaron having to be hospitalized and intubated again (going back onto the ventilator). She said that this would cause Aaron to lose months of progress, assuming that he survived it. So, Dr. Hardy laid down the law for us. She said that adult visitors are fine, but no children should be allowed to visit Aaron for his first six months. When people come to visit, the first thing they must do is to wash their hands (so please don’t think we’re being rude when we ask you to do this), a three-minute scrub with regular soap, before they touch anything in the house. But, she said, as long as visitors are willing to do this, then we shouldn’t dissuade people from visiting. We discussed a lot of other things, like oxygen-supplying equipment, equipment companies, delivery of the equipment and oxygen, oxygen flow rates, oral medications, bronchial dilators and “treatment” equipment (Kathleen and I will be continuing Aaron’s twice-a-day lung treatments), precautions that we need to take in the home, pediatricians, pulmonologist and pediatrician visits (weekly, at first, then bi-monthly, then monthly), emergency services (yes, we will be notifying our local EMT’s that we have a baby who has a higher-than-normal probability of needing emergency services), insurance issues, etc. Social worker Karen Shearer sat in on our meeting. After everyone else had left, she spent some time with Kathleen and me. She stressed to us that taking care of an Aaron at home will not be easy, and that it will be a major challenge for us as his parents. She even said that most couples are not able to handle this kind of workload themselves, and hire a nanny to help ease the burden a bit. Kathleen and I don’t plan on doing this, but I mention this just because Karen made the comment. Karen also stressed that this will be a major challenge for our marriage, so Kathleen and I are preparing ourselves as best we can in the giving and communication departments. Yes, we are still very much looking forward to bringing our boy home! We haven’t heard from Dr. Good, the eye doctor, yet, regarding whether he thinks it’s OK for Aaron to be put on the higher concentration of oxygen that he’ll need at home. But, we’re still planning on bringing Aaron home a week from tomorrow. Kevin |
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