Friday, August 11, 2006

Bummer

We have been taking Clare's blood pressure readings over the past five weeks. During her last echo, her blood pressures were at a good number. However, since Clare was under sedation at the time, her cardiologist did not think the reading was a reality for Clare in her everyday life. One of our goals since Clare's surgery has been to wean her off her blood pressure medication. Since Clare does not like having her blood pressure taken (especially at the doctor's office), her readings are always high when she is not sedated. So we wanted a more accurate picture of what Clare's blood pressure actually is. Thus we've been taking them at home, in the hopes that a familiar, comfortable, relaxed environment would get the actual reading. Since the advent of the lollipop in our house, taking Clare's blood pressure has been extremely easy!

I spoke with Clare's cardiologist this morning, and unfortunately, her blood pressure is still too high to come off the medication. Clare is scheduled to have another echo in a couple months, so we will just see what her numbers look like then. I am not surprised, but a little disappointed. Selfishly, it would have been nice to get rid of that medication. It is the only one Clare is on that is multiple times a day, so by cutting it out, we would cut out three doses a day. Plus then it would mean Clare doesn't have high blood pressure. Just a bummer....

I was also really hoping to start weaning Clare off her blood pressure meds because, yesterday, she had another medication added to her regimen. (Sorry, Clare, for sharing all this info with everyone!) For a long time, Clare has had issues with passing bowel movements. It is extremely painful for her. She screams and cries until it is through. We were at lunch with friends the other day and Clare was trying to pass one during lunch. She just sat in her highchair and cried. When I explained what was wrong with Clare, my friend, looking at Clare, said, "That is so sad. That makes me so sad." And that summed up my feelings. To see that look on her face, especially since she doesn't understand why it hurts so much, makes me so sad. I don't know what Clare's trouble is (the low muscle tone, maybe?) but I hate to see her in pain like that. Plus I don't want going to the bathroom to be an issue with Clare. I am afraid that if she associates having a bowel movement with intense pain, then there will be a hang-up about it somewhere in her future. I have a close friend who has dealt with the same issues with her son since he was a year old. Now, at a few months shy of turning four, she is having lots of difficulty with potty training. She believes it is from his painful experiences when he was younger. He, in fact, is on the same medication that Clare was just put on. Since we first noticed that this was painful for Clare (pretty much since she stated eating solids), we have tried to get more fiber in her diet to aid her naturally in this way. However, she hates juice, will only tolerate prunes a little bit, and is in love with cheese, eggs, bananas, and milk (all good for her weight gain, but not as good for bowel issues!). She eats a lot of whole grain, high fiber carbs, but it is not enough to help her. And we don't want to cut down on her dairy products because that is vital to her brain development and growth. So we've finally come down to medication. It is a powdered stool softener that we mix in with her milk. Luckily, it is tasteless and clear, so Clare does not even know it is in there. It is still too soon to tell (she just started on it last night), but here's hoping for some good results!

7 comments:

Lisa R said...

That is so sad to see a baby going through that . A little boy in Tatums daycare class has the same problem I always feel so terrible for him... Hopefully the meds well work, if not try Mcdonalds that always seems to work for grown ups...LOL

Aunt Joan said...

What a cruel world that a girl cannot even poop without difficulty! Here's hoping the meds work for her, and she can relax a little. Praying that her BP behaves, also, and she may be drug-free someday! Love to all of you, especially Miss Clare, Aunt Joan

Susan Rohde said...

Hello!
We used to have Jaxson on Miralax...is that what Clare is on?!? I agree, I think they have a tough time with bowel movements due to low muscle tone. We were on Miralax for about a month and everything cleared up so I hope that is the case with Clare. Does Clare have hypercalcemia?? We weren't suppose to give Jaxson any milk or cheese or dairy of any sort due to his high levels of calcium.....
Hope your weekend turns out great!
susan

Kim Monahan said...

Ava has been on Miralax twice a day since she was diagnosed at about 6 weeks. She had such a problem back then that her rectum literally prolapsed and became seriously infected. After spending weeks in the hospital with IV antibiotics, and three surgeries to repair the damage, it was decided that laxatives will be a way of life for her. She doesn't complain at all about the meds. We mix it with flavored Pedialyte and she enthusiastically gulps it down! I believe it just makes her life so much easier. I know it is upsetting to add even more meds.
Ava is doing Prevacid, Reglan, and Miralza 2x, breathing treatments 4x, and eye patches every day. Ugh. It just seems unfair sometimes, doesn't it? Oh well, hand in there 'cause ClareBear is just precious! (I call her that all the time now!)

Kim Monahan said...

Oh, my. My typing is not so good this evening. TGIF!

Kerry said...

That's rotten. My friend's non-WS son had the same problems, but did outgrow it and she didn't have problems w/potty training. Hope it goes that way for you.

Aspen said...

Oh bless her heart! I understand this more than you know. Daven has always had trouble with bowel movements and being so constipated. Hence, the year long of colic. He is now on Milk of Magnesia once a day and this has seemed to do the trick. Good luck, I hope this helps.

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