Michael Warechowski IV

Updates on our sweet Michael

General update

on May 22, 2013

Michael hasn’t been feeling well the last few days. He’s sleeping a lot and you can just see it in his eyes. If he could talk he’d say (in a very pitiful voice), “mommy, I don’t feel good.” He doesn’t have a fever but his secretions have thickened and he’s very lethargic. Let’s just hope all this sleeping is going to help knock out whatever he’s got.

On a side note, we have increased one of Michael’s medications – Clonidine for his PAID episodes. He has been having short PAID episodes, mostly during the night so the doctors agreed its time to try an increase via a patch. The patch is like a tiny bandaid that goes on his upper arm and gets changed every 7 days. It releases the medicine at more steady rate. The sleepy side effects of this increase should have worn off a couple of days ago so I don’t think that’s what’s causing his lethargy. Because Clonidine can cause his blood pressure to go too low, we have to get it checked every week for the first few weeks.

While we were at his pediatrician’s office last week, they went ahead and did an X-ray of Michael’s lower spine. He has mild scoliosis – something that happens to all MLD kids, I assume. We need to get with our PT and see about getting some soft bracing to prevent it from getting any worse. We don’t want it to get so bad that his spine presses on his lungs, making it difficult to breathe.

Michael is still struggling quite a bit with his Stridor. When he was diagnosed with stridor, the ENT was mainly concerned about Michael’s ability to get oxygen. After monitoring him on his pulse-ox machine, we see that getting in oxygen is not the problem. The problem, as warned by Dr. Escolar, is that his heart is having to work extra hard for him to breathe. MLD affects the muscles and the heart is the most important one. We don’t want to do surgery because it is a very serious procedure and he could end needing a trache. We are constantly adjusting Michael’s positioning, turning his head from side to side but sometimes there’s nothing we can do to stop it.

All in all though, Michael is doing well. Much better than he was six months ago. We look at pictures of Michael and watch videos of him from when he was healthy and it seems like an eternity ago. Some days I feel like I’ve aged 20 years and I can’t even remember where the time has gone. Sometimes I wonder if not remembering is a good thing?

The MLD conference is coming up this summer and I think Mike and I have decided to go. When they had it last year, Michael had not progressed yet and we were scared to go and find out what was going to happen to him. But now we feel like we are just like everyone else and it will be nice to meet the other families, especially my MLD BFF, Lina.

Thank you for continuing to follow us and give us your support. It is nice to know that we are loved and thought about. Here in Georgia, it is definitely summer! I’ve checked the weather forecast (as I do several times a day) and there’s no rain in sight, just lots of sun. It’s a beautiful day so make sure you enjoy it!

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5 responses to “General update

  1. K says:

    I think of you and your little boy often. So sorry this is happening.

  2. Brenda says:

    Still praying for your precious Michael! God bless you.

  3. Teryn says:

    Katie,
    For the stridor have you checked into a nasal trumpet? It is a soft device that goes in one side of the nose and helps to keep the airway open without a trache and might help the heart from having to work so hard.

  4. Shon says:

    I’m still praying for your precious boy! I think of him and pray for him often. God bless!..:.:..:..:

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