The Good
- Testing has eliminated certain genetic syndromes as the cause of his seizures.
- He has had 2 normal MRIs.
- We still don't know the cause of his seizures.
The Bad
- He has had 2 abnormal EEGs. Upon admission to the second hospital in India, the doctors noticed that he was having seizures, put him on phenobarbital and performed an EEG. The EEG showed short burst suppression patterns. A second EEG was done last week, and it showed a "different" abnormal pattern. (Anything, however, is better than the burst suppression pattern, so technically, this bullet belongs under The Good.)
- He still has seizures on phenobarbital.
- His upper body is overtoned and his lower body is undertoned.
- He is currently struggling with pneumonia.
- Oxygen requirements have increased and efforts to feed with a bottle have ceased.
- Relocation to an in-patient rehab centre is on hold.
- It will be a few weeks before other genetic and chromosomal testing results are available.
- Even the neurology team at this infamous hospital is finding him to be a "complicated" kid.
- We still don't know the cause of his seizures.
The Ugly
- A test for RSV was done today, and until Master Cheeks kicks his infection, Mommy and Daddy must dress in The Ugly...
I have been checking for a Hayden update. Hoping you get the answers you are after soon and that Hayden gets better as soon as possible. I hope Scarlett is adjusting to her 'new' home ok.
ReplyDeleteDear little guy, he is such a little trooper. Some are born into this world with a battle from the start (damn it). I hope the RSV is negative, so not welcome. Be well MC.
ReplyDeleteWarmest wishes from our family to yours xoxo
Thank God he is at Hopkins. They will discover the problem and hopefully he will be home soon. Our prayers are always with you all. Actually we're saying a few extra for you these days!!! All our love, Linda & Joe
ReplyDeleteOh, and by the way, you still look beautiful in the official garb of the hospital. Yellow is your color!!! Love you sweetie !!!
ReplyDeleteI've been following your blog from the beginning. I truly think you are amazing. Ive been praying and thinking good thoughts for you and your family. I've been through infant seizures with my daughter Lila, who was born in India in March 2009. Lila started having seizures around 3.5 months. She would have roughly 10-15 seizures a day. It was pretty scary. There was no known cause to her seizures. She was also on phenobarbital and still had tons of activity. The doctors ended up switching her to a cocktail of keppra and zonegran. Within a week of being on those meds her seizures stopped. Today she is off of all meds and completely seizure free. I hope that the doctors get Master Cheeks' seizures under control soon.
ReplyDeleteHugs,
Tracy (www.millionrupeebaby.blogspot.com)
Poor Master Cheeks. I hope you get a diagnosis soon. I'm glad you are home.
ReplyDeleteI agree with Linda, yellow is a great color for you. An that chair looks pretty nice too ;)
ReplyDeleteSo so happy to hear that Hayden is getting the care he needs from so many doctors.
Sending you lots of love.
Sorry to hear about the seizures but Im glad to hear you are getting closer to a diagnosis! You guys are in a great place...give scarlett a hug and a kiss...What does Carlos think about Scarlett? Any jealousy? Take care...
ReplyDelete....and the most outstanding 'good' is that he's in the best place to deal with all that is good, bad and ugly. We're full of admiration for all of you Bernadette. And thrilled that you're home.
ReplyDeleteLots of love,
Philip & Adam
Been thinking of you all sending lots of love to you all!!
ReplyDeleteMaster cheeks is in the right place and so are you back home!!
Love the yellow outfit to!!
It must be really good for Mr. Cheeks to hear your voice and recognize that you are still there ~ his constant lovey. And Daddy will soon be recognized as 'his person' too. The two of you are his best support ... though medicine is still necessary.
ReplyDeleteAvoiding RSV is worth the yellow frock.
We are all hoping for improvement with the pneumonia. Tell him about strawberries and chocolate to encourage him that the hard work he is doing is worth the exertion.
Know that all 4 of you are still held in love all around the world. Believing better news is coming....
Old Ca Grandmother
PS: you do a brilliant summary of information.
Lots of good, lots of good.
ReplyDeleteHoping for a speedy solution now that Master Cheeks has new peeps (including Daddy!) to impress.
Best wishes as always.
You are my hero Bernadette. Seriously! Master Cheeks and Scarlett have the be mom in the world! Fingers crossed and many prayers that things improve for your little one. xo
ReplyDeleteThinking of and praying for your family.
ReplyDeleteA lot of positives energy and sun from europe ! We are with you !!!
ReplyDeleteHey B! Thanks for the update. M and I are still thinking of you and your family...take it easy, relax in the knowledge that you are surrounded by love and support
ReplyDelete<3 <3 <3
ReplyDeleteWishing you a prompt diagnosis and a smooth recovery. Lot of kisses to your incredible family.
ReplyDeleteB, you're the only one I know who can make that yellow hospital garb look glam! So, we all wait and hope that he clears up quickly and is back on bottle soon, and that these are "benign" seizures. If there is such a thing, I sure hope that there is!!!
ReplyDeleteK.
ps, that yellow chair looks quite comfy!!!
ReplyDeleteI'm sorry there aren't straight-forward answers here for you. That sucks. But, I like that they're tackling one layer at a time, and really doing a deeper look at his overall medical situation. You guys have done such a wonderful job making sure Hayden gets absolutely everything he needs to heal. You and Duane are an amazing pair of parents, and your children are blessed to have you. All four of you are in my prayers along with the medical team treating Hayden.
ReplyDeleteSorry to hear about Master H's seizures, he is such a strong little boy (must take after his mommy) sounds like he is getting great care, wishing him well soon x ps you look great in yellow!
ReplyDeleteSo glad to hear that you got some answers, hope that each day gets a little easier.
ReplyDeleteHe couldn't be in a better place. And look! No fly swatters!
ReplyDeletePraying for you and your family. You are so strong and so is he. You guys will make it through this hiccup and find out what's really going on behind his struggles!
ReplyDeletehugs to hayden and kisses to scarlett...well actually both to them both....hoping for a move out of the yellow room and some steps forward...
ReplyDeleteHe's got so much support out here and everywhere. Thinking super good thoughts for the remaining test results. HUGS.
ReplyDelete