Our desktop computer is not working, so I have been offline (sort of) for a few days. I broke out the laptop to check out messages and finally to update the blog. This entry will probably be a bit long and boring to anyone but me reading it later, but I’ve got to catch up on some details that should be recorded. Remember, the primary purpose of this blog is to be a journal to give us reference points to help us at later times. The secondary purpose is to keep people updated as to Mikie’s well being and of course hopefully help others with similar situations. I suppose I could put most of this in his Word file journal instead of the blog but some of you have told me that you read every word, and who knows how it might help someone else with a special needs child. Skip right to the last paragraph for prayer requests.
Mikie is doing quite well, and I can quite confidently say that he is NOT dying. I know that if I had dropped in on this blog and read the last few weeks of entries I would wonder if these people would make up their minds, is the poor kid dying or what? One entry would make it seem like he is not going to make it through the night, the next would lead you do believe all is well. The oxygen level problems we experienced were serious and quite perplexing, but looking back it seems the fix was pretty easy. I’m really in a continuing medical education program with Mikie and learning so much almost every day.
Right now we are having a hard time getting enough food in him. We haven’t quite figured out how much or how fast we can put through his G tube before he starts ‘gurgling’. I know he can’t keep going on just a couple of cans a day. Mikie is very active, shaking his favorite toy and pulling or pushing on his bed rail. He’s generally in a pretty good mood but can get a little cranky at times. The incision at his G-tube site is very tender and a little inflamed, and about 2 inches of his large incision is rather junky. (Want to see a picture? Well, Lorraine says I shouldn’t post that one.) His heart rate has been pretty stable at between 110 and 125 when awake, down to 80-90 while sleeping. He got rather agitated the other night and it got up into the 130’s so we gave him a lopressor and it came back down. I’m checking his blood pressure daily now to make sure we don’t give it to him when it is low. His BP has been right were it is supposed to be lately. Beth from home health came out Friday to check his PT and INR levels and Lorraine didn’t make note of them so I can’t write them down, but they called and said the doc said to continue the present dosage of warfarin. His right leg is still a little larger than the left from a blood clot but not so bad. When we get him in his chair we try to prop it up a bit.
Mikie is still not on his regular dosage of seizure meds as he just doesn’t seem to need it, only having an occasional light seizure. We’re going to try his normal dosage today just to see if it will slow him down a bit. There were times in the past that he was so doped up all he did was sleep. Now he is wound up and enjoying himself so much we just don’t want to knock him back down too fast. One reason we slowed his meds is because we want him breathing better, especially after his episode in the hospital with the morphine.
Let me record a bit about his feeding problems and some things I am trying this morning, since I can be here and don’t have to rush off to work. I’m going to have to try getting to a worship service somewhere this evening, it ain’t happ’n this morning. I just trying gravity feeding his meds with about 150-200 ml of water at a rate just a bit faster than a drip, about 5 minutes max. He pretty much immediately started gurgling. I’m not sure I can say this is a reflux problem yet, someone else is going to have to help me on that one. We waited about 20-30 minutes and he pretty much cleared up, so I gave him a nebulizer treatment, and about that time his seizure meds went to work and he went to sleep in his chair. I set his feeding at 200 ml per hour but the dose at 50 so that it would stop in 15 minutes and beep. (200 ml / 50 = ¼ hour or 15 minutes) I then set the Hold feature on the pump for 15 minutes and when it beeps we will start it back up for another 50 ml of food. I have no idea if this will work. It seems that a continuous feed of 100 ml per hour would accomplish the same thing but I think we need to give the stomach time to empty out. I wonder, would it be better for us if we could feed continuously at a steady rate than small meals at regular intervals or larger meals three times a day? I’ve heard people say more small meals are better than fewer large meals. (While typing this 15 minutes have passed and I see that Mikie is breathing very clearly so I started the pump back up for another 50 ml of food. He is still sleeping. He should, he didn’t get to sleep last night until 3 AM and was up at 7:30!) So if we were to play around with our way of eating and could make any schedule physically possible what would be the best, as well as the most satisfying? Gosh Mikie looks good right now, resting comfortable in his chair with an oxygen saturation level of 97 percent and a heart rate in the 90’s. With that I must go.
We are thankful to God for being able to bring Mikie home and care for him here. We are thankful that is reasonably comfortable and in little if any pain. We are thankful to see him smile and laugh again. Here's a new prayer request: Lorraine is scheduled for total hip replacement on the 27th of June. She should have had it done last month but we were a bit busy. She is in LOTS of pain, waking at night or not sleeping, so much that I wake and she is in tears. She is also frustrated in her inability to do more for Mikie. She is also somewhat fearful of the procedure. Please pray for Lorraine.
