Masinja is doing ok today. He's resting peacefully, and didn't seem too distressed until they tried putting him on his belly. He didn't like it very much, so they put him on his back and he's been fine since.
Madelinja didn't get her reservoir out today. The neurosurgeon was concerned that he might do more damage removing it, than leaving it alone. However, we're still worried about it possibly getting infected. The doc is supposed to draw fluid off it tomorrow and have it tested to see if there's an infection present. Hopefully there isn't, because we don't know what the course of action will be to fix it, or what damage it might do.
Madelinja also had a dye test done on her bowels today. It worked pretty well, and the doc was pretty pleased with the results. However, we noticed that Madelinja developed a small lump in her lower abdomen, so we'll be waiting for the doc to tell us what it is. Hopefully it's not a problem.
On an upbeat note, we got to see their cranial ultrasounds today. Both looked to be making good progress with their hemorrhaging, and the doc thinks Masinja might be able to make it without needing a shunt. That would be really great if it comes true.
Well, that's all for this busy day. It's been stressful to say the least....
Peace,
T.M.
Wednesday, March 7, 2007
Daily Update - 6 March 2007
Masinja had his surgery today. He did well, and now has an ostomy like his sister. The doc plans on feeding him as soon as possible, so we'll see how it all pans out. His vitals were all good, and he was resting pretty peacefully.
Madelinja's reservoir removal is scheduled for Wednesday. We'll let you know how that turns out, too.
We got the results of their eye exams. Masinja's are worse than Madelinja's, and he'll probably require laser surgery in the next few weeks for that. The blood vessels in the eyes force the retina to wrinkle, and they have to be removed, otherwise he could go blind. He has a follow-up appointment next week, and they'll decide on the surgery then.
That's all for now.
Peace,
T.M.
Madelinja's reservoir removal is scheduled for Wednesday. We'll let you know how that turns out, too.
We got the results of their eye exams. Masinja's are worse than Madelinja's, and he'll probably require laser surgery in the next few weeks for that. The blood vessels in the eyes force the retina to wrinkle, and they have to be removed, otherwise he could go blind. He has a follow-up appointment next week, and they'll decide on the surgery then.
That's all for now.
Peace,
T.M.
Monday, March 5, 2007
Daily Update - 5 March 2007
Masinja is set for surgery tomorrow. It will take place some time between 1000 and 1300 hours. I spoke to the surgeon on the phone tonight, and he said there's a 75% chance that Masinja will have an ostomy like his sister. The surgeon is hoping that he might be able to fix everything without having to do an ostomy, but we're prepared either way.
The doc wants to start feeding Masinja as soon as possible, so this will be a step forward to him getting stronger. She drained 30cc's of fluid from his brain drain, and it's the same color as it was, so that's not bad.
Madelinja's reservoir is going to have to be removed. It's projected for Wednesday, but that's not a definite yet. The neurosurgeon didn't like the gap that opened in the incision and said if we don't remove it, we'll risk infection. Infection is not good. He'll end up putting in another reservoir in a couple of weeks, so we'll let you know how it moves along. Otherwise, she's not doing too badly. She's having her moments, but not as many.
The doc drained 25cc's from her brain drain, and sent some to the lab for screening. The protein content has dropped from 1,600 to 700, so that's good. It's still tea colored, so she still has some work to do, but she is making some progress.
Lastly, the Twinjas both had eye exams and blood transfusions. We won't know the results of the eye exams until we get with the doc tomorrow, so hopefully we'll have some news regarding that. We do know they're scheduled for another eye exam in 2 weeks, so we'll see if they found anything.
Well, that's all for today.
Peace,
T.M.
The doc wants to start feeding Masinja as soon as possible, so this will be a step forward to him getting stronger. She drained 30cc's of fluid from his brain drain, and it's the same color as it was, so that's not bad.
Madelinja's reservoir is going to have to be removed. It's projected for Wednesday, but that's not a definite yet. The neurosurgeon didn't like the gap that opened in the incision and said if we don't remove it, we'll risk infection. Infection is not good. He'll end up putting in another reservoir in a couple of weeks, so we'll let you know how it moves along. Otherwise, she's not doing too badly. She's having her moments, but not as many.
The doc drained 25cc's from her brain drain, and sent some to the lab for screening. The protein content has dropped from 1,600 to 700, so that's good. It's still tea colored, so she still has some work to do, but she is making some progress.
Lastly, the Twinjas both had eye exams and blood transfusions. We won't know the results of the eye exams until we get with the doc tomorrow, so hopefully we'll have some news regarding that. We do know they're scheduled for another eye exam in 2 weeks, so we'll see if they found anything.
Well, that's all for today.
Peace,
T.M.
Sunday, March 4, 2007
Daily Update - 4 March 2007
Masinja had a pretty mellow day. He was a little touchy tonight, but nothing more than he usually gets. We just let him sleep and then he's happy for a while.
Madelinja's reservoir was actually oozing/leaking a little bit around the incision. You can actually see part of it through a small opening in the incision. They cleaned around it really good and put some gauze on it, but we'll see if the doc will do anything else with it tomorrow morning.
I changed her highness' linens again tonight, and she didn't manage to pee on everything, so that was a happy note. Her nurse was pretty happy, too.
Well, that's it for today.
Peace,
T.M.
Madelinja's reservoir was actually oozing/leaking a little bit around the incision. You can actually see part of it through a small opening in the incision. They cleaned around it really good and put some gauze on it, but we'll see if the doc will do anything else with it tomorrow morning.
I changed her highness' linens again tonight, and she didn't manage to pee on everything, so that was a happy note. Her nurse was pretty happy, too.
Well, that's it for today.
Peace,
T.M.
Saturday, March 3, 2007
Daily Update - 3 March 2007
Well, tonight was interesting. I helped change the linens and give my daughter a sponge bath, and she preceded to pee on the bed 3 times. She had impeccable timing as I was holding her in the air for 2 of them. The poor nurse had just finished changing the linens, when Madelinja did it the third time. I hope she behaves the rest of the night.
Masinja was just chilling tonight. He was a little fidgety, but nothing major. He's still scheduled for surgery on Tuesday as far as we know, so we'll see what happens. We'll definitely let you know when it occurs and how he fares.
Other than that, nothing exciting to report.
Peace,
T.M.
Masinja was just chilling tonight. He was a little fidgety, but nothing major. He's still scheduled for surgery on Tuesday as far as we know, so we'll see what happens. We'll definitely let you know when it occurs and how he fares.
Other than that, nothing exciting to report.
Peace,
T.M.
Friday, March 2, 2007
Daily Update - 2 March 2007
Madelinja had 25ccs drawn off her brain drain today. It was tea colored, which is better than the chocolate color it was originally. It seems to be an improvement, just not a tremendous one. She's having more fits now, but we think it's in direct relation to being tapped. She seems to get more agitated after they drain her fluid.
Masinja had a pretty boring day, which is good. As far as we know, his surgery is still scheduled for Tuesday. If it changes, we'll let you know.
Other than that, nothing to report. Boring is good!
Peace,
T.M.
Masinja had a pretty boring day, which is good. As far as we know, his surgery is still scheduled for Tuesday. If it changes, we'll let you know.
Other than that, nothing to report. Boring is good!
Peace,
T.M.
Thursday, March 1, 2007
Daily Update - 1 March 2007
Well, it looks like Masinja's surgery will be this Tuesday. They did the reverse dye test and confirmed a blockage in his intestines. After they clear the blockage, the doc intends on starting to feed him, so we'll see how it all works out. Otherwise he's doing fine and just chilling out. He weighed in at 3lbs 4.4ozs today.
Madelinja had a better day today. A lot less fits, but still a few too few many for me. They've decided to change her ostomy bag more than once a day now. It seems the skin around her ostomies is getting irritated, so they're going to try and keep it cleaner. She weighed in at 2lbs 7.7ozs today.
That's all for now.
Peace,
T.M.
Madelinja had a better day today. A lot less fits, but still a few too few many for me. They've decided to change her ostomy bag more than once a day now. It seems the skin around her ostomies is getting irritated, so they're going to try and keep it cleaner. She weighed in at 2lbs 7.7ozs today.
That's all for now.
Peace,
T.M.
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