I am here at our “second home” Children’s Health Care of Atlanta Hospital. We came to the ER on Saturday Feb 2nd after posting on a mommy FB page some things that were going on with Hudson and getting parent advice. Hudson was very unstable and ataxic for over 4 days his cognition seemed the same but I literally had to be his shadow and keep him from crashing into the walls or falling down stairs etc. This is not entirely new to us because when he has a bad seizure day as I call it he can be that way ranging from a few minutes to several hours but it has never lasted several days. We (Hudsons’s doctor, Mike and I) have been concerned for many months now that Hudson’s seizures are not getting better but becoming more frequent and intense even though we have tried multiple medications and multiple combinations of different medicines. The mommy advice that I received was that it is possible he has become toxic from his medicine and should be taken to be checked by a doctor. Wise advice, we took him to the ER where they admitted him and we were scheduled for an MRI the next day. Sunday comes and we are informed that there is not adequate staff for a sedated MRI and it will be done Monday morning. Great, we are worried that a tumor is growing and causing problems. The blood work that came back from the ER was all ok. That being said only 2 of the 5 medications he is on can have levels drawn to see if there are toxic levels in his body. They were ok. Then he ran a high fever, great did he pick up a bug or virus while we were here or what, no one knows just something else to complicate the picture. Anyone with a child of special needs or perfectly healthy child knows that sometimes when it rains it pours and well the fever was adding to the mix of unknowns. Monday the MRI was scheduled for 1:00 pm so no food or water since midnight. My little trooper was doing great although I did have to hide every bit of food or water in the room so he did not see anything. Or MRI did not happen at 1:00 but 3:30pm keeping him distracted for that long was difficult to say the very least and poor thing was getting grumpy. My stomach was grumbly so I am sure he was starving and not really understanding why his mommy was not feeding him. He was also scheduled for an EEG so I requested that the leads be put on while he was still sedated. Some awesome nurses had to make it happen but they did and so Hudson woke up with his smurf hat on.
Putting on EEG leads is stressing for everyone, the staff who put on the leads do this everyday and are great at it but let’s face it a screaming unhappy child is no fun for anyone. There is marking with a red soft pencil, measuring, placing the many (I should find out just how many one of these days) leads on with stinky glue and then drying the glue with an air hose. The air hose makes a very loud noise that is perfect for making any child flinch and scream. Hudson normally does quite well when having this done but if I can avoid some stress with all that he has to endure you had better believe mama bear is going to do what I can. Thank goodness they were able to do this while he was still sedated. He was definitely NOT happy about waking up with the “smurf hat” on though. They put all the wires that are attached to the leads together in a ponytail and then through a cotton sock cap and we call this his “smurf hat”.
All the EEG leads.
My big kids think that is what it looks like so the name stuck and when we tell them that is what he is having done they know what we are talking about. You are then put into a room with a camera in the ceiling and also a microphone so that they can capture the electric stimulus from the seizure, any audio and visual. The parent must also push a button to mark on the EEG when a seizure begins and keep a paper log what time did it begin, how long did it last, what did it look like, is this
This is what the data looks like and what the video camera captures, see smaller square in Rt. corner that is Hudson on the bed.
typical or different from normal etc. I might add that you must stay with your child at all times now don’t get me wrong I love snuggle time with my baby but a girl’s gotta pee and oh maybe shower after several days. You can have a nurse come sit with your child so you can use the restroom, but I was fortunate to have a few friends stop by and bring me something other than hospital food and allow me to take a quick shower. Denali also had to pee so a few nurses who fell in love volunteered to walk him for me when I could not. This particular hospital stay was quite different because a friend drove with me to the ER Saturday and stayed over in the hospital room and to be honest since Hudson’s birth I think that is the first time that anyone has stayed with me, it was WONDERFUL just to have the distraction of a friends conversation.
Kaya visiting during testing.
Big sister visiting before EEG had begun.
Tuesday doc comes in and we talk about all the seizure we saw and the plan of action. Well, I was never so thrown off as I was with this conversation. I would not have been more shocked by seeing a lion walk down the street. He said that we need to see if all the seizures are coming from one place then we should consider brain surgery AGAIN. Yes, I said again. We already been there done that!!! I was not prepared for that and am numb I think actually not sure what to think. So now our ER admission for instability has turned into a surgical evaluation. I wait until Mike comes to visit to tell him face to face, he is as shocked as I am but tells me that we will get through this we always do.
Today is February 15th. Life happens quickly and well I have been hands on and busy since Hudson being discharged from the hospital. It is 2:00am and Hudson just had a seizure it woke him up and took a bit to settle him back to sleep. He is resting well now. I was supposed to wait ten days to call the dr to see what the plan is for Hudson and what all the test results show. It would be 3 more days to wait for the tenth day and I am not so good at waiting especially to find out if we are cutting my kids head open again . So I called yesterday in hope of finding something out. I did, I found out the EEG has not been read yet and so we wait some more. I was hoping not to go through the entire weekend not knowing but it seems we will. Some people think it is better not to know but I hate the not knowing. If I know then I can face whatever it is we are going to be dealing with and put myself in preparation mode. Both physically, emotionally and making phone calls and gathering data and info. Maybe we will hear on Monday. Mike and I have had a few conversations about the possibility of brain surgery and our thoughts and fears but it is hard to discuss because we are going on little info about what we are dealing with exactly. The EEG will tell us if all the seizures are coming from one tumor to from several. Idealy it would be all from one so that the surgeon can go in and take out that one tumor. Hudson’s right side of his brian has many many tumors or “tubers” far to many to count just adding to the complexity of the situation. It seems to be his right frontal lobe but there is a “hot spot” on the left and that is all we know until we get more of the EEG results. The MRI was stable except they have not measured the SEGA’s which are two tumors in the ventricles of the brain but we are on a drug to shrink those, the drug is working wonders for many people with TSC and for us it is keeping his SEGA’s stable.
Hudson at 3 weeks old just out of brain surgery.
Some how dealing with brain surgery of a newborn who was seizing constantly seemed to be easier. I can not fully put into words why, but it was an obvious choice. He was always either seizing or sleeping and would never have developed. Now we know Hudson who he is, his smile, his piggy noises he makes to make you laugh, his laugh that lights up a room. His right side of his body is weak from his original brain surgery so I wonder now we are talking about surgery on the right will that make his “good” side weak? Will surgery change who he is mentally, physically, emotionally. The basic question is will it do more good than bad? We as his parents are put into the position of making these hard decisions. It will not be done lightly or without prayer and many consultations.
People often say “It’s not brain surgery!” because they are trying to relay that brain surgery is difficult, complicated and basically unbelievably hard. Since having a child go through actually brain surgery I find that statement kinda funny because we now come from a place of knowing just how difficult it is on our end anyway, the surgeon’s perspective is a whole other story. We will continue to be the best parents and family we know how to in the meantime. We will E.T.M. as I like to say Enjoy The Moment!!! Which basically means live in the moment, enjoy what you have and cherish everything.
One more thing it has been brought to my attention that sometimes people do not know what to say to someone who is going through a difficult situation no matter what it is a death, sick child, breast cancer, relationship issues whatever it may be and some people say nothing because they are unsure what to say. For Mike and I we both agree that something is better than nothing,” I’m praying”, “we are here if you need anything”, “we are thinking of you”, etc. In times like these you feel so alone and raw that a friend or family member reaching out can mean the world. Well we do not yet know what will be but will keep you posted as we travel through this part of our journey. Thanks for all the love and support.