Michael Warechowski IV

Updates on our sweet Michael

EEG Update

I apologize for not updating sooner! Many people have been asking about the results from Michael’s EEG. Well, the episodes that Michael has been having ARE seizures. They are partial seizures, mostly on the right side of his brain (where his shunt is) but there is a small amount of activity on the left side as well. Michael’s neurologist wants to go up on his Keppra again to see if it might help. Frustrated that his neurologist keeps wanting to increase his medication even though it doesn’t seem to be helping, I called his team in Pittsburgh to see if they felt that was a good plan. They do. They said that sometimes it just takes a higher dose or a combination of medications to get the seizures under control. So this past Saturday, we increased his Keppra from 350mg twice a day to 400 twice a day. Since then, he has still been having 3-5 seizures a day. He’s had 2 so far today…. Keep your fingers crossed that his increase helps!

Michael seems to be about the same otherwise. He’s still having bouts of nausea (or “pukies” as well call them) and discomfort but is pretty good for most of the day. He’s been waking up in the middle of the night pretty consistently – usually once or twice around 3 or 4am. We usually just have to suction him and re-position him and then he’s okay. We haven’t seen a big smile from Michael in awhile but he still gives us some sweet little smirks from time to time. I think all these seizures and the med-tweaking (yes, that is an official medical term) has him in a bit of a fog. Hopefully all of this will pass.

I can’t believe Thanksgiving is here! And soon Christmas will be here and then it’s 2015! Life needs to SLOW DOWN! We have a pretty laid back holiday planned. We are having Thanksgiving dinner with Mike’s family on Thursday and then with my family on Saturday. Michael does love to see the rest of his family – grandparents, aunts, uncles and cousins. When we get together, you can tell he is listening to everyone talk and laugh. It’s good to see him alert and interested. He’ll get lots of attention, snuggles and kisses for sure! Let’ just hope and pray that everyone stays healthy and feeling good so we can enjoy all of the festivities!
I hope everyone has a wonderful holiday. Cherish every moment you have with the one’s you love. I’ll try to update again soon!

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Update

IMG_1187I am NOT happy with Michael’s neurology practice! As soon as the new Health Insurance plans and rates come out, we are switching away from Kaiser! We got approval for his EEG last Wednesday so we took him down to his Neurologist’s office to have the probes put on. Because it is a 48-hr EEG, they just send you home. They said we could take the probes off on Friday when it had been 48 hrs. and then just bring the machine back to them on Monday. But let me back up…They gave us a broken machine. You are supposed to be able to just hit a button when he has a seizure so that way, they know that what they are seeing on the EEG correlates with what we are seeing in person. Well this little “button” was broken so we just had to write down the time they occurred. My problem with that is (other than the obvious fact that an EEG costs $150/hr so we deserve a working machine) how do we know that the time on the machine is the exact time as our clocks at home? A few seconds can make a difference when you are looking at tests like these! What if our clocks were off by a minute? They might miss the episode that we wrote down! Worst of all, when we took the probes off Michael’s head, which we did as gently as possible, there were welts and broken skin all over his head. I don’t know if it was an allergic reaction to the glue but in one spot it left a blister so I also wonder if they could have been burning his skin or something? The entire time he had the probes on, he seemed a little uncomfortable – just not himself. After seeing what these probes did him, it is obvious that he was in pain the whole time. Mike and I just about cried when we realized this. Can you imagine your child in pain and they want nothing more than to tell you but they can’t??? It’s absolutely heartbreaking.

After we took the probes off, we gave him a nice, long bath and then I held him for about 2 hours. He just slept quietly and peacefully on me – something he hadn’t done since the EEG started. It was like he was saying “thank you for taking those darn things off!!”

I’ve included a picture of what the EEG did to his head as well as a picture of me holding him after his bath.

I will return the EEG machine to his Neurologist’s office today and they will be getting an earful from me. I will update everyone once we get the results. Thanks for checking in!

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EEG!

Finally! The 48 hour EEG is in progress!

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Update

IMG_1096Hello followers. Thank you for all of the love and support since my last post. I was having a “moment” when I wrote that last entry but my outlook has improved a bit. I realized after I vented to you all, what a blessing I have in my life. Literally, after I typed that post I went into Michael’s room and all I felt was happiness. I just need to remember that when I’m having a bad day – how lucky I am to have him, how amazing he is and how much joy he brings to our lives. I’ve attached a picture of Michael from the other morning – watching one of his favorite shows – SUPER WHY!

I hope everyone had a good Halloween. Ours was uneventful, to say the least. I made a big pot of chili and the three of us just stayed in and snuggled on the couch. Looking at Facebook and seeing all of the kids dressed up made me a little sad, a little jealous. But I also enjoyed seeing all the beautiful people out there enjoying their lives; having fun and doing what you are supposed to do in life – live.

In my last post I mentioned that Michael was beginning to have more seizures and they were lasting longer than normal. I hate to report that they have not gotten any better. This morning began with a seizure at 4:55am and then vomited at 7:45am. Last Sunday he had 8 seizures in one day. This whole past week he has been averaging about 4 seizures a day until yesterday he matched his record and had 8 again. We are in the process of increasing his seizure medicine but we have to go slow. By this time next week, he should be up to his new dose and (fingers crossed) not having many seizures, if any at all. On top of all of the seizures, Michael is still having bouts of nausea and some vomiting. I have heard that the two can be connected so we are just having to wait this out as well. There is also the possibility that Michael is fighting something – a cold or virus…maybe he’s going through a growth spurt? Anything that makes him uncomfortable can trigger a seizure or PAID episode. We did have a CT scan done to check on his shunt but Michael’s Neurosurgeon has not received a copy of the scan yet (I’m just now learning how stupid Kaiser Permanente is). Apparently for Kaiser to send it to his specialist, it has to go through their home office first so it can take up to 2-weeks for his neurosurgeon to receive it. So much for a sense of urgency! Because of all of this, Mike and I have been on high alert for the last couple of weeks; just waiting for another episode to break through. I guess it’s because of the stress and “being on alert” but Mike and I are both hearing things that aren’t there – I will be holding Michael or he’ll be right here with and we swear we hear his alarm going off or him having a seizure. It’s been a bit stressful but it’s okay. We’ll get through this.

On a positive note, someone has reached out to us and offered to help. We couldn’t ask for better timing. We are so honored and grateful to announce that RIDE to GIVE (a 501-c3 public charity that helps families like mine raise money for medical expenses) chose to run a campaign for Michael from 10/28 until 11/11. They are doing everything they can to help us raise enough money to cover Michael’s medical bills for 2015. Here is the link to their page. https://www.facebook.com/ridetogive?ref=br_tf and the link to our campaign: https://fundrazr.com/campaigns/8tOzb/sh/61Edl0 If you don’t mind, please share our campaign with anyone you think might like to help.

Again, thank you for all of your support. I thank my lucky stars every day for all of the amazing people in this world that have helped and supported us. As I told my friend Maria, you will be blown away at the the amount of love and support that will come at you as you guys go through this tough journey. Maria is my friend whose 4 yr. old little girl was just diagnosed with Batten Disease – another fatal, neurodegenerative disorder similar to MLD. Her friends and family, acquaintances and strangers have come out of the woodwork to raise money, prepare meals, etc. for them – All of the things that all of you have done for me, Mike and Michael. People really can be truly amazing.
Have a great rest of the weekend everyone. And remember,”It’s a beautiful day.” (in case you don’t remember, that is something Michael used to say every morning. True words to live by, wouldn’t you agree?)

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When it rains… (Warning, this is a “half glass empty” kind of post)

IT POURS! I feel like that statement was made to describe my life over the last 2 1/2 years, especially most recently. Just when things seem stable – the business is doing well, Michael is comfortable, I’m healthy and feeling good. BAM! “Sorry Katie, you’re not allowed to have things this easy for too long. Here’s some more stress for ya!”

Last night was a rough night – oh how the tears were flowing. All of the stress has finally gotten to me. From Michael’s brain hematoma and second brain surgery in July, to his increased discomfort and seizures…Not knowing what meds to change or how to fix this for him. From work being extremely stressful and busy (not the good kind of busy) to having an employee quit right in the middle of it all…To finding out about another family close to me whose daughter was diagnosed with a different neurodegenerative disease that is fatal AND realizing how incredibly unfair this world is to our children. To just now finding out that Michael’s health insurance plan changed drastically at the beginning of the year (thanks Obama!) causing his out of pocket maximum (the amount we have to pay before Kaiser pays 100%) to triple! And on top of it all, I injured my hip and knee over a month ago and they won’t get better so I’m walking around in constant pain! To make it all worse, we have no help with Michael. No nurse, no day-care, no school. Michael’s aunt and grandmothers help here and there for us to run some errands or go out on a date but other than that, one of us is at home with him while the other one is out. Mike and I have to share our day and it makes things so hard. People offer to come stay with him which is much appreciated, believe me, but there are only a few people who really know Michael; who know how to get him comfortable if he’s not, how to move him, give him meds, suction him, etc. We can’t just have anyone come over to “watch him” and really, I wish I could just stay home with him all the time but that is not possible when you run your own business.

I know everyone has stress in their lives and I’m not saying I’m special by any means. I just wish that the universe or God or whoever could just cut Michael a break. Cut me a break! Just because I’m handling the stress I already live with, doesn’t mean I want more! Same with Michael – just because he handles this disease with grace and strength, doesn’t mean he can handle more. With everything he goes through, doesn’t he at lease deserve comfort?

Michael’s seizures (We are pretty sure now that’s what they are) are becoming more frequent. He had 4 of them yesterday. They are lasting about 1-2 minutes each. I have videoed a couple of them so we can consult with neurology. He is also having bouts of nausea and discomfort so I want to make sure his shunt is functioning properly. The only problem is that with the change in his insurance, there is a $500 co-pay for the partial-MRI they want to do! Of course we will pay it to get the answers we need. This just illustrates my point that “why can’t anything just be easy?”

Please pray or keep your fingers crossed or send your positive energy to us (or do all three!). Things have been rough and we could just some help. And if you have asked me lately how I’m doing or how Michael’s doing, I’ve probably said, “I’m good” or “he’s doing pretty well.” I guess all in all, we are doing okay. Things could always be worse. But despite how I really feel or how things really are, I’ll probably always say “Yeah, things are good” because I don’t want to get into what’s really going on. I won’t ask for help and I won’t be a “Debbie Downer.” That’s what Caring Bridge and my blog are for – to spill the awful truth. And actually, after venting all of this crap out, I do feel better. So thank you for listening and thank you for letting me be honest. I’m a strong woman, sure, but my strength is tested every day. And sometimes I just need to let it out, to be a “glass half empty” kind of person for a minute. Tomorrow is a new day – maybe it’ll be a “glass half full” kind of day.

Universe, please throw us some good news sometime soon. We need it. Thank you.

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I hate medications!

Medications are a necessary evil. Trying to figure out the right ones and the right dosages… Sometimes I wonder if Michael would be better off without some of his meds.
On Christmas Eve last year, (about 1 month after his emergency brain surgery for hydrocephalus) Michael had his first ever seizure. At least, that’s what we thought it was. They were few and far between for a while but then they got more frequent. We started him on a new med earlier this year to treat his seizures (called Keppra) but it didn’t seem to make much difference. The seizures (or “episodes” as we now call them) would come in clusters and sometimes he’d go a week or 10 days without one. Then, these episodes began to have some other symptoms along with them that made us think that they were not seizures, but PAID episodes.

Just a quick recap – Michael was diagnosed with PAID syndrome in the fall of 2012. PAID stands for Paroxysmal Autonomic Instability with Dystonia. Basically, all of his autonomic functions (things that the body controls automatically like respiration rate, heart rate, blood pressure, body temp, pupil dilation, hiccups, muscle spasms, etc) go haywire all at once. It is a painful to go through and thus, very hard to watch Michael experience.

So, we started the process of weaning him off of his seizure meds (since we are thinking he’s not having seizures) and he did great with that. He did not have an increase in the number of episodes with the lower dose of Keppra. So, we then began increasing his Clonidine (the medication used to treat PAIDs). But now that we have increased his Clonidine, his episodes are MORE FREQUENT! WHAT THE H***? He has had about 5 episodes in the last 2 days. He hasn’t been very comfortable and isn’t sleeping as well. This makes no sense.

You may be wondering if we did an EEG to see if these episodes are seizures…Well, yes we did. However, the brains of MLD children will always show an abnormal EEG but that does not necessarily mean that the are having seizures. When we saw Dr. E in Pittsburgh in July and we described what these episodes were like, she said she thought they sounded like PAIDs and Mike and I agree. So we are back to the drawing board – I guess maybe a 48 hour video EEG is what we need to do. My only concern is that these episodes come in clusters so what if we schedule the EEG and he doesn’t have one at all? Then we have wasted 48 hours of testing just to find nothing and get no answers. I’m at a loss right now and my heart just breaks seeing Michael go through this.

On a side note, I had a thought yesterday… I was at the hair salon and I saw several old ladies accompanied by their adult children taking them to get their hair done. Just as I will take care of my parents when they need me, these children were taking care of their parents. I got sad thinking, who will take care of me and Mike when we are really old? We won’t have children or grandchildren to care for us – to spend time with us. I just can’t believe that I will live my life without children to watch grow up…

I’m okay – it’s just certain situations at random times that make me sad for a minute. Then I get home to Michael and all is good – he always makes me feel better. I just love him so much. More than anything ever.

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Michael’s story

The MLD foundation has asked for help in spreading the word about MLD. They asked us to write a short story about Michael’s diagnosis – from then until now. Here is what I wrote.Michael was a perfectly healthy, smart and funny little boy. At 20 months, he was already saying his ABC’s and counting to 20. He was typical by most standards. Except….he couldn’t walk. We began wondering about Michael around 16 months but the doctors just said he was a “late walker.”Well, when his 2nd birthday approached, we knew something wasn’t right. After months of testing, a brain MRI and urine test confirmed that Michael had MLD – Metachromatic Leukodystrophy. Shortly after his diagnosis weheaded up to Pittsburgh, PA to see the world’s most knowledgeable doctor aboutMLD, Maria Escolar. She warned us that this disease progresses very fast, especially in the beginning. We had no idea how fast she meant but we soon found out.

We received Michael’s diagnosis on March 27th,2012. At that point he could still do everything except walk unassisted. By September of 2012, only 6 months later, Michael had lost all of his abilities.He could no longer sit up, hold his head up, talk or eat by mouth. He was very uncomfortable most of the time, whimpering, vomiting, sweating and crying everyday. We didn’t know how to get him comfortable and he couldn’t communicate with us. We spent a few months trying to figure out what medications would make Michael comfortable. A second and third trip up to Pittsburgh got us on track and we finally got Michael on the right medications and dosages. He was finally comfortable by the spring of 2013.

The first year after Michael’s diagnosis was the hardest year of our lives. To see your only child go from being able to carry on a conversation with you, being able to laugh and play to not being able to do anything…and even worse, to be in constant pain was hard, to say the least.

We now at 2 years post diagnosis and life is different now. Michael is stable. We have a routine. He is comfortable although, he does have some bad days. We have had a few scares, some trips to the emergency room and 2 emergency brain surgeries. But Michael is stronger than any human I have ever seen. He handles everything with such calm gracefulness. Despite everything he has been through, he still manages to smile sometimes. He still shows us love through his eyes. He has taught us strength, patience and understanding. He brings us indescribable amounts of joy. We play and interact in our own ways. We still have fun and even though Michael can’t communicate, he is very much alive inside. He is just trapped in this body that doesn’t work. He likes to be stimulated – read and talked to, held and loved on. So we spend the majority of our days doing just that – loving on him, talking to him and cherishing the fact that we have him.

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Muddy for MLD!

Hey everyone! Michael has been healing up nicely after his surgery. However, this last week has been kind of rough. He’s been extra snotty and had some diarrhea. We saw the pediatrician on Friday and they did some labs. We aren’t too concerned – we just hope he’ll feel better soon!
I’m sure you have all heard of the ALS Ice Bucket Challenge. Well, we need to get the word out about MLD too! So the MLD foundation has started the Get Muddy for MLD Challenge! Here is a link the a video I did. Please accept the challenge, get muddy and donate to the MLD Foundation. All donations are helping find a cure for this dirty disease. Mike, Michael and I thank you in advance!

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Muddy for MLD!

Hey everyone! Michael has been healing up nicely after his surgery. However, this last week has been kind of rough. He’s been extra snotty and had some diarrhea. We saw the pediatrician on Friday and they did some labs. We aren’t too concerned – we just hope he’ll feel better soon!
I’m sure you have all heard of the ALS Ice Bucket Challenge. Well, we need to get the word out about MLD too! So the MLD foundation has started the Get Muddy for MLD Challenge! Here is a link the a video I did. Please accept the challenge, get muddy and donate to the MLD Foundation. All donations are helping find a cure for this dirty disease. Mike, Michael and I thank you in advance!

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Surgery Update

We had our appointment with Michael’s neurosurgeon this morning and after looking at Michael’s MRI, he agreed that something needs to be done but he is not in any immediate danger. He recommended we schedule surgery for next week. However, we had already kind of planned on the surgery being this week and had made arrangements at work and whatnot. So we are going to go ahead and get it over with tomorrow at noon. The sooner we can fix this, the sooner Michael heals and gets to feeling better. The surgery will take about an hour and a half and we should be in the hospital for a couple of nights assuming everything goes smoothly. So please keep Michael in your thoughts and prayers and when we get home, I’ll post another update!

As always, thank you all for the continued love and support.

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