March Break and More Medical Stuff
Well March Break started on Friday, so we've been trying to relax and enjoy the time off a bit. I'm enjoying sleeping in anyways, especially since I'm usually awake with James at nights for a bit. The lack of schedule isn't good for James, but it's nice for a week anyways.
James has not been himself lately. He's clingy and cantankerous, one minute busy doing something, the next wanting to be held; he can't make up his mind on anything and since he can't talk he just gets us all confused and frustrated. As well he's up at nights, sometimes coughing, occasional gagging, sometimes yanking on his ears, other times with no sign of anything being wrong ... just that he wants you to come and comfort him. His coughing seems to have come back since the broncoscopy, not sure if this is normal.
Over a month ago we changed James' formula. At the same time we also tried to give him his entire feed during the day because we were not giving him night feeds (thinking the night feed was causing the trouble). This seemed to cause problems and so we gave up on that idea. But the problems continued. His stools were inconsistent, sometimes 3 a day, sometime 6 a day, sometimes thicker, mostly thin and seperated. He's back to having mucas in his stools and we've seen blood again as well. We slowed down his feeds once again and now it takes 2 hours to feed him a 1o ounce "meal", seems like he's always hooked up. I finally sat down and looked at my lack of notes over the last month (I go through stages where I take lots and then get sick of it, then regret it because I have no idea what's been going on ... I'm in the regret stage now) and began to think that maybe the formula change was the problem and not our overfeeding him. So today I contacted the dietician in charge of his formula changes and she got back to us with a new formula mixture again. They have taken the Duocal out of his diet and changed it to Polycose. Duocal provides fat and carbohydrates, whereas Polycose is just extra carbohydrates. I'm not sure why they chose this change as I did not speak with the dietician. James has previously used Polycose and I remember them mentioned that we couldn't use too much because it can cause diahrea, so it will be interesting to see how this helps, if it does.
I left a message for the lung specialist today regarding the blood work he had done on James that showed some things out of line. He called back and spoke to Rob, so not all my questions are answered here either as Rob doesn't always think of the same questions that I do, but a few things are answered. He basically called back to say there was nothing to be concerned about, he did not see an amino acid deficiency or any auto immune issues. This is different then what the pediatrician and genetic doctor thought when they looked at the results. I'll have to probe further into that one yet, but at this point he obviously doesn't think there is anything to be too concerned about.
He also advised that they found bronchial bacteria in both of James' lungs. Both lungs had yellow mucas and phlegm in them. I tried to research what exactly this means, but there must be a more techinical name for it because I couldn't find anything. So I'll have to ask further on that one too. But for the time being we do know that this means James has to take an antibiotic for 2 weeks. More fun to add to our schedule since this antibiotic has to be taken 1 hour after or 1 hour before a "meal". Well in James' case there isn't always 2 hour between "meals". So this means setting a timer after a meal to remember to give him the medicine on time so that I don't have to delay the next feed. It also means I have to make sure that we have supper on time so that he's done that feed by 7:30, so I can give him his medicine at 8:30 and feed him again at 9:30 so he's done at 11:30 so that I can go to bed (on time?). If I'm not on the ball I'll have to stay up even later to wait for him to finish his late feed. This antibiotic will also throw another loop in the never ending puzzle since it will cause his yeast to act up and make his bottom more sore, so we won't know if the change in formula is helping. But hey, at least it's only for 2 weeks.
Marietta finally went for her ultrasound and x-ray on her finger today ... a little late, seeing as the bumps disappeared about a week ago. I decided to still take her because her finger is still swollen and she keeps saying she can feel the one bump still, although neither Rob nor I can feel it. We'll see what the results say, but I know the ultrasound tech didn't find anything since she called the doctor in to make sure she had checked good. She too notice there was swelling, but she commented to the doctor that she couldn't find any pockets and the tendons look good. Hopefully the swelling will disappear just like the bumps and we'll be done with it.
The kids have been having fun with their holidays. Nothing special, just a lack of schedule and a more relaxed pace. We enjoyed an indoor picnic and made a fort in their bedroom for them to sleep in. They went to Early Years Gym Day on Friday and hope to go to Grandpa and Grandma's for a few days yet. Rebecca had her birthday party on Saturday. She chose to have my family down for the evening. We all went swimming and then afterwards came down for cake, presents and food. It was a nice evening together. 
5 o'clock for 5 years
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