Michael Warechowski IV

Updates on our sweet Michael

Our First Trip to the ER

on August 18, 2012

Last night was a scary one and unfortunately, only the first of more to come (so I hear).

Michael woke up from his nap yesterday very irritable and whiny. He wouldn’t eat and we tried everything we could to make him comfortable. After about 3 hours of  us moving him to different positions, trying to entertain him, etc., we decided to just go ahead and give him his meds hoping that would make him feel better. He became very upset as we were giving him his bedtime doses of Neurontin and Baclofen and at one point, I thought he had inhaled his meds. That really scared me. We waited about an hour and a half hoping that once his meds kicked in, he’d fall asleep and be okay. Well, that didn’t happen – he continued to appear to be be in more pain than usual and he refused to sleep. I tried rocking and singing to him and then I noticed his breathing was a little weird. The first thing I thought…Aspiration. He inhaled his meds and now he’s gasping and wheezing. I was so scared so I took him to Scottish Rite.
After going through triage, they wanted to doctor to see him right away – they too, were concerned about the way he was breathing. Once they started poking and prodding, he got more upset and the breathing got worse.
Let me take a short detour and tell you how frustrating it is that no one knows what Metachromatic Leukodystrophy is. I had to say those words over and over. Explain what he has been going through over the last 5 months over and over and over….”What is it called again? Is it a form of muscular dystrophy? Why is he here tonight? What is MLD???” Even the ER pediatrician didn’t know much about the disorder and had to call Beth, our amazing nurse practitioner with Dr. Escolar’s team in Pittsburgh. I can’t blame them and I never showed any frustration but it just sucks.
Anyway, they gave him some Adivan to calm him down and once it kicked in, he began to breathe normally. They did a urine test, x-rays of his chest and tummy, blood cultures and a CT Scan. All came back normal. The only thing that showed up was that his poor little intestines are all backed up. This would explain the discomfort and arching of his back. We discovered the breathing thing only happened when he was upset.
At this point it was midnight and Michael still fought going to sleep. He still seemed to be in pain so they gave him a little morphine. An hour and half later, he finally fell asleep on my chest at 1:45am. It took 2 more hours before the doctor finally came back around. At that time, he told me that they wanted to admit Michael for observation. I told him that I’d really rather take him home. The doctor said he thought that was okay. He didn’t feel that I was going against doctor recommendations but that it was more of a preference.
For the first time since Michael was born, he slept in the bed with Mike and I. He did okay until about 8am at which point we got him up and flooded him with liquids and Miralax and gave him his morning meds. By 10:30am, he was asleep again. He pretty much slept all day with a few periods of wake time. He seems comfortable and sound in his crib right now (currently 10pm Sat. night). I’m hoping he’ll sleep this off and be okay tomorrow.
He hasn’t eaten since 5:00pm on Friday and hasn’t pooped since 8:00am on Friday. Keep your fingers crossed that tomorrow is a better day for his digestive system.
I know this was a long update but it has been a long weekend. Only about 2 more days to go and we get his G-tube. Two more days.
One cool thing I must mention is that Mike’s dad who lives in Texas was in town this weekend. Although he didn’t get to see Michael on a good day, he did get a chance to rock him and put him to bed tonight; spend some alone time, just Michael Warechowski JR. and Michael Warechowski IV – it was sweet.
Night night. Here’s hoping we all sleep through the night…

3 responses to “Our First Trip to the ER

  1. Kelly says:

    I can only imagine the worry that you guys experienced and the frustration of dealing with a medical staff that did not understand little Michael’s special needs. I’m glad that he finally got some sleep. I would be fussy to if I couldn’t sleep.

  2. Bobbi Cher McLure says:

    Whether posts are long or short, many people across the country are following your blog and praying for you all. We appreciate your posts and photos that keep up us updated with how things are going with your precious little man.

    The ER is a scary place – glad to hear everybody’s home and resting. It’s also wonderful to hear that some things are working to help Michael feel better. You work so hard to keep Michael comfortable and happy, and you are taking such good care of him. He is a lucky little boy to have such a loving and giving family and such strong parents who focus on the positives for him rather than allowing yourselves to fall into despair and hopelessness as so many others might. Take care of yourselves and remember how many people are thinking of you and praying for you every day.

    God bless you all!

  3. Alisha says:

    Katie – fervently praying for all 3 of you. Praying God will continue to hold you all close as he guides you through this very difficult process. Love that you are able to update us and educate us when you can. So many people I know are praying for and supporting you in any way they can.

    It’s wonderful that you are still able to enjoy every sweet moment you can and that you are able to also share it with family. May God continue to work in you and through you as you care for your wonderful son.

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