Again, sorry it's been so long since the last post, things just get so hectic, and not a lot really changes with Theo. He has been breathing a little easier, although he is still having those problems. The only time he doesn't have the breathing issue is when he is sleeping. That's how I know he has awakened--when I hear the wheezing, I know he is awake. Even when he is awake and calm, he has noisy breathing. It definitely gets worse when he is agitated, but he does do it a little bit all the time. When I took his tube out to change it last weekend, the brething problems abated for the time I had the tube out. So I am pretty sure the tube is making this worse if not directly causing it. I think the tube might be causing him to constrict his throat muscles or something. When he is asleep he is completely relaxed and so the airway is totally clear. He also continues to gag occasionally with his feeding or when we give his medicines. He hadn't done it for several days but then gagged several times on Thursday and spit up twice.
After thinking about all this and really weighing all sides and talking with our home nurse and our nurse practioner at MCV, I called and set up a surgical consult with pediatric surgery to schedule the gi tube placement in his stomach. Our consult is for next Wednesday the 16th at 1:40 p.m. Dr. Hanes with MCV pediatric surgery will be seeing us and doing the surgery. Our home nurse Donna recommends him very highly. I haven't met him yet, another surgeon did the Hickman surgery when we were in the hospital.
I'm not looking forward to Theo's having to go through another surgery, but I want him to be as comfortable as possible and in the long run, I think it will help him breathe better and to have his feedings without gagging or throwing up. I think the tube in his nose, which goes down his throat is just irritating him. I don't really understand the throwing up and gagging, because he only does it occasionally and the majority of the time, only when we give certain medicines--the docusate and the phenobarbitol--but once he does it once, he gets agitated and then tends to have problems coughing and gaggin for several hours with feeding. We have had to slow his feeds way down or try to wait until he is asleep to feed him when this happens. I just hope the surgery for the placement of the gi tube in his belly goes well. People keep saying how simple a procedure it is--and I'm sure it is, but it's still surgery and he will have to be under anesthesia and have pain afterward and heal and there are certainly risks. I do feel though that it will better for him eventually. I'm pretty sure the surgery won't take place until after his MRI on the 30th. The nurses said that Dr. Hanes would work around that.
Other than that, not much else is happening. Theo weighs 18 lbs 2 oz now and looks healthy. Jamie and I are continuing to take turns staying downstairs with him and he sometimes has good nights, but often is very fussy and uncomfortable, crying and arching his back, tensing up his muscles. He has increased his agitation again in the evening and we have had to give him his morphine and ativan more frequently. We can't stand to see him upset and crying, especially when there is nothing we can do to help him or even know what is wrong. I think it's mostly jsut a weird cycle that he gets in. He tends to do very well in the mornigns with few problems, he hardly ever cries or gets upset in the morning, even when we change him or dress him or give him a bath. As the day goes on his crying and agitation increase. Night time is the worst. When we stay with Theo downstairs we get 2-3 hours of sleep, and that is scattered over the whole night, so we are basically sleeping every other night. We try to take naps during the day when we are home with him as well. We are just kind of used to being really tired all the time. Afternoons is when it really gets to me. I feel totally exhausted around 4:00 p.m. every day. There are a lot of ups and downs, mood swings, and of course the inevitable tears which seem to just spring up out nowhere. Sometimes I can talk about him and what has been going on or see a baby commercial or whatever and be fine and then other times, I'll just immediately feel the tears come to my eyes. There is also the love I feel for Theo that still makes me very happy and grateful to be his mother. But always, always there is this sadness and heaviness in my heart that never goes away. I know a lot of you have been really concerned about me and the crisis I am facing on a spiritual level. I appreciate your prayers and the messages some of you have sent me by email or comments or in cards. Knowing you care and knowing you are thinking of me, of all of us, is a great help. I don't think anything I have been feeling is unusual. I'm sure it's all normal--that doesn't make any of it any easier. I have felt less angry over the past couple weeks. But I am so acutely aware of the tragedy in our world. On great and small scales. I know that what we are going through is only one small drop in the huge ocean of pain and grief and sadness, need, sickness, hunger, injury, fear, death, lonlieness, abuse, and on and on. Knowing that our pain is only one miniscule addition to the whole does not lessen our terrible pain in the least, but it underscores, I think, the great magnitude of suffering that happens all over our world all the time. And I never really felt the impact of that suffering, of others' pain, of the human situation until now. I knew it was there and I even thought I was enlightened about all the suffering of others, quoting the Bhudda and such, feeling secure in my spiritual beliefs and I had no real idea of what true suffering could be, or what it really meant. I don't think I will ever understand why, not just in our case, but for all of it, and I am certainly nowhere near being through the pain, and there is lots more to come, but I do feel less anger. I don't know what that means either, I guess it's just another phase, more feelings to feel, to go through. I know that I will never be the same as I was before this happened, I am changed and I think that change is something that is ongoing.
Thanks everybody for the cards and well wishes that continue to come in. It really does help me to know that people are thinking of us and loving us and holding us in your hearts.
I'll keep you posted--