Michael Warechowski IV

Updates on our sweet Michael

So Far, So….not good.

on September 3, 2012

Check out Michael’s new haircut! Mike and I did it ourselves. Personally, I don’t like it but it was the only way we knew how to cut his hair ourselves. I can’t imagine taking him somewhere to have it done right now.

It’s been 2 weeks since Michael had his g-tube put in, his fundoplication procedure and his gallbladder removed. We thought the lack of nutrition and enlarged gallbladder was the cause of his discomfort and constant whimpering. Well, that doesn’t seem to be the case. We are still playing detective.
Literally, Michael whimpers, whines and cries all day long except for when he’s sleeping. He’ll calm down for about 10 minutes when we hold him lying on our chests (as seen in this picture) but then he gets agitated and inconsolable again. This has been going on for about 3+ weeks. It finally got to us today so Mike and I took him to Urgent Care. It’s not the best place for him but his regular pediatrician was closed. They x-rayed his chest and took some blood cultures to look for infection. No fever, no infection, oxygen saturation was good but they did find “gunk” in his chest. They can’t call it Pneumonia for sure since he didn’t have a fever, cough or low oxygen but they are going to treat it with antibiotics anyway. Let’s just hope this is what has been bothering him and after a few days of antibiotics, he’ll be his old smiley pie self.
Personally, I think his stiffness is causing some agitation as well. We just tripled his Baclofen (the medicine that is supposed to help relax his muscles) dosage in the last 3 weeks but I think he may need even more. The build up of sulfatides is what causes stiffness in MLD kids and it can be very painful. Luckily, we go back up to Pittsburgh next week (9/11) for a follow up appointment. I hope they can shed some light on things.
It breaks my heart beyond explanation to see my sweet baby in pain. “Somethings gotta give!”
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7 responses to “So Far, So….not good.

  1. Judy says:

    Prayers for Michael that the MLD experts in Pittsburgh have some answers for his pain as well prayers and great empathy for the pain you and Mike are going through.

  2. msollicito says:

    I cannot imagine going through this with my child.. I do not know how you are coping with it.. Poor little Michael

  3. J. Kelly says:

    I pray that your visit to PA today was able to yeild even a glimmer of good news and hope. Your story has truly created a stirring in my heart! I pray the Lord will give your family the strength to endure this trial. God bless!!!

  4. Khasty says:

    What a beautiful family! I hate that Michael (and you two) are going through such a hard and uncertain time. You two were such a wonderful display of love on the Atlanta segment that you did, I still sit here and weep. I pray that your sweet Michael is being seen in Pittsburgh this week and the Dr’s. can give your baby some good news and relief. Is Michael a candidate for the genetic clinical trial that are advertised through the MLD website? Praying for answers.

  5. Heather Little says:

    Katie, my husband Chris Little when to school with your husband. I have been following your story since I saw it on the news. My heart breaks for you and your husband. I know it does not seem fair for a parent to loose a child. It should always be the other way around. My thoughts and prayers are with you and Michael and your families. I have posted on my facebook your story and asked for donations to help you and Michael. Hopefully it helps! My thoughts and prayers are with you guys and your sweet little Michael. He will always be your little angel!!!

  6. Vikki says:

    I have just heard of your story. And it breaks my heart. I will be praying for your family. May I ask where you are living? I’m in Bartow County, Ga. From your posts, I’m thinking you are in Ga. Anyway, I would love to jump in and help if at all possible.

  7. Bobbi Cher McLure says:

    I saw on your FB page that you are headed to see your doctor in PA. We’re all sending prayers that some relief for Michael can be provided, and we pray you have a safe and comfortable trip there and back. May the pain we experience as we follow your story in some holy way allow us to shoulder some of your stuffering to reduce Michael’s and your pain and heartache. Give a kiss to your precious little boy for all the strangers and friends who are praying and hoping for miracles for you all.

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