In my last post I mentioned that Karl took Jess and I to see the PC (pediatric cardiologist). It was quite a good visit. Jess was happy to see Dr. Donnerstein again as well as the other staff. Jess had an echocardiogram and did quite well with it. Afterwards we visited with Dr. Donnerstein in his office. He says that she is improving. Last time he saw her, her liver was a little enlarged... now it's about normal. Her hepatic veins had looked a bit engorged the last visit but have improved. Her feet and legs are only slightly puffy but nothing to worry about. She is doing quite well and her congestive heart failure is in control! YAY! In fact, he said that she seems to look better and better every time he sees her. I said, "except for that one time you slapped her into the hospital in June." He joked, "That was only to be mean." Of course Jess teasingly got after him about that. Dr. Donnerstein said that she seems to be improving ... and there's no medical reason for it. He recalled that just two years ago she didn't have enough energy to even get out of her wheelchair to get onto the exam table. That was when Jess was having hemoptysis (coughing up blood) practically daily. There is no proof that the morphine therapy is what is preventing the lung bleeds... but there's no other medical explanation... and I'm not complaining! We are continuing the morphine and just keep doing what we have been doing! Of course all the prayers from all of you just happen to coincide with her improvement... *smile*
I brought up something that I have been a bit worried about. From time to time Jess says that she sees "black and white" or "old-fashioned" colors in one eye only. I thought it was only her left eye but she said that it changes sides. Sometimes she has a headache and sometimes she doesn't. Dr. Donnerstein suggested that we see a neurologist. It could either be migraines or TIAs Transient Ischemic Attacks... tiny bloodclots that go through the blood vessels in the brain. They don't leave a lasting effect but can cause symptoms during the time they are happening. The problem is, in order to treat TIAs, they usually have to give the patient blood thinners. Jess has the lung bleed issues so she wouldn't be able to receive treatment - IF that's what the problem is. On the other hand, she might be able to receive treatment for migraines. I looked up TIAs and they are scary! They can be a warning that a stroke could be next. Please pray that whatever is happening with Jess is treatable. Poor kid goes through so much already.
One more thing... Jess has to go see a GYN this Tuesday - she's having "female" problems. She has never been to this type of doctor and I'm hoping she deals with it ok. Also, I talked to the GYN on the phone (she sounds very concerned and compassionate about Jessica's situation) and she said that after the exam we may want to talk about hormonal treatments... I mentioned this to the PC as well and he said he would be nervous about Jess taking any hormones but would be happy to talk to the other doctor any time. Apparently certain hormones can contribute to thickening of the blood and Jessica's blood is already too thick due to lack of oxygen - but that hasn't stopped her from having bleeding issues. UGH! Wish us luck!
2 comments:
Just... Wow. I am so glad that Jess is doing so well, words don't really do it justice. I'll point Jo here when she comes in, she'll likely want to say something!
Way to go Jess!
Hi Nancy ~ I am very happy to hear that Jessica's appointment went well and that she is doing so great! How AWESOME!!!!! Keep it up Jessica!!!! Looking forward to more wonderful updates... ~Tammy (Proud Mom to: Zoe and Zurik)
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