David’s Poem after Daniel’s Seizure Last Night

Come Lord Jesus!

Right now the world is dark (Come, Lord Jesus)
Was all of this for naught?
This suffering for answers that never came? (Come, Lord Jesus)

I know God hears, He is not deaf (Come, Lord Jesus)
Faith, faith is the victory, is it not?
Lift high the Name. (Come, Lord Jesus)

Answers? I don’t have answers (Come, Lord Jesus)
Only pain. In Heartache, sadness
There’s no shame. (Come, Lord Jesus)

The end I cannot see (Come, Lord Jesus)
I am not wise like He,
yet I act as if I am the same (Come, Lord Jesus)

Nevertheless, we do not lose hope (Come, Lord Jesus!)
We dare not lose hope,
we must not lose hope or quench the flame! (Come, Lord Jesus!)

Come, Lord Jesus
Come, Lord Jesus
Come!!!

Wednesday evening

Daniel’s nausea was under control the rest of the day. This afternoon I started packing up our stuff. Our friend Kristi arrived this evening to help us drive home. We didn’t have discharge orders so we couldn’t leave tonight and it was getting kind of late anyway. So Kristi stayed with Daniel and I went downstairs and got a much needed shower.

Then Kristi left for her hotel, I got ready for bed, and then Daniel had a seizure.

Here in the hospital, not hooked up to anything, no information gathered, after suffering through the previous 8 days hooked up to the EEG.

I’m so upset I can hardly move or speak.

Don’t know if I can sleep. Don’t know if there are any implications of this on the plan to leave in the morning. Don’t know what it will be like driving home with Daniel in this weird place he’s in with having been given a different rescue med – if he will be floppy like he is with the usual one, if he’ll be nauseated and throwing up because of the new steroid meds. I am in a mental/emotional place I haven’t been before and it does not feel good.

Wednesday – urgent

Very short post here – we are scheduled to leave today. Daniel reached the end of his rope last night around 10 and started tearing out the electrodes again. We decided to just let it be done and they were all taken off. The nurse and I got D’s hair washed up and got him back into bed around midnight then he started throwing up. Thought we were back on track this morning, but around 10 he started throwing up again. Apparently this is a side effect of the steroids. He has hardly eaten anything all week and has basically nothing to throw up but he just keeps heaving. He is asleep now, but now I don’t know what will happen today and a friend is scheduled to fly up today to help us drive home. Pray. So bewildered.

Monday

Today Daniel was a sunnier version of himself. We might have dialed in a plan on medications for the itching and I think we stayed ahead of that better than yesterday. For those of you who didn’t see the FB post, Daniel got to the point yesterday where he just couldn’t take it any more and while I was downstairs getting a shower and tending to some laundry he started ripping the electrodes off his head. Thankfully the techs have been really nice about that kind of thing and they got him back up and running in not too much time.

This morning he was singing and being really pleasant. Then a beautiful young woman with long blonde hair showed up in the doorway and said she was the music therapist! Gold mine!! She had a large keyboard, half-size guitar, drums and a buncha other stuff. The boy was in his glory. She also loves Chris Tomlin and knows worship music! Jackpot! So I slipped out to do a little work and they had a blast. Apparently just before I got back they had held a concert for all the staff and they gathered around his door and he sang for them. Precious.

On a less cheerful note, things here are not going the way we had hoped and we will not be leaving here with a surgical solution for Daniel’s epilepsy. As much as I was afraid of brain surgery, and what recovery from that might be like, the prospect of deliverance from epilepsy for Daniel made it an attractive possibility. But for some reason, Daniel has not had any seizures in spite of several days completely off seizure medications. I have been very surprised by this and now have questions about whether we should be medicating him at all. His EEG has not been any different on meds or off meds, so aside from messing him up with side effects, I don’t know if they are doing anything for him. They might be, and the doctors won’t let us leave without them.

Anyway – we have been here for a week and there have been no outward seizures. We have that one subclinical seizure that went for two minutes without showing up outwardly, so all that does is let us know he has seizures we can’t see. This is not comforting. We do know that seizure originated in the part of his brain where he has damage from his brain bleed. Without any other seizures, we cannot say where they come from and we cannot identify an area where surgery might help.

We have the ESES diagnosis, which has multiple potential causes and just as many potential treatments based on the particular cause, but we don’t know which one that is for him. One one side there are 10% of normal healthy kids who have ESES and it never manifests in seizures and it never affects their lives in any way. One the other side you have a certain percentage of kids who are greatly impacted by ESES and it impacts learning and functioning and can result in significantly diminished quality of life. Some kids essentially outgrow it. Others are ruined by it. In a few months we will learn if Daniel has a genetic form of this. That is quite unlikely but must be determined because treatment is different for those who do. For now, Daniel will begin a steroid treatment which will probably last for 4-6 months. In 4-6 weeks he will need to have a 24-48 hour EEG again to see if it is working to calm down the very high number of epileptic spikes Daniel is having all night while he sleeps.

There is a condition called Benign Focal Epilepsy of Childhood and about 10 in 100 kids have it. Some of the patterns seen on Daniel’s EEG fit this profile, so the doctor is also floating the idea that maybe Daniel has this. Maybe even without the brain hemorrhage he would have had this. Most if not all kids outgrow Benign Focal Epilepsy of Childhood.

I struggle with these discussions. Do they even make statistical sense? It seems obvious to me that his brain injury plays a significant role in his seizures. If all these other possibilities could be in play, then Daniel is one of the unluckiest boys in the world, which I don’t believe anyway.

I am struggling with how things have been unfolding here. My hopes for a surgical solution for Daniel which could free him to learn and make progress at school are pretty much crushed. I’ve cried a bucket of tears here, and I doubt I’m done. I’m so disappointed and so confused and so unsure about how to put together the information we have gotten here.

Tomorrow a different doctor starts his two weeks on the EMU, and that doctor is Dr. Ajay Gupta, a well-known epileptologist. I am hopeful that he will take a fresh look at Daniel’s situation and either form a different plan or help me better understand the one being set forth by Dr. Moosa. Dr. Lachhwani will be back in town on Wednesday and I am hoping we will be able to talk with him again before we leave. We continue to need and value your prayers for our family.

Saturday – Sunday

I didn’t post at the end of the day yesterday because I was trying to get Daniel to go to bed at a relatively normal time in hopes of one of his typical seizures emerging. In order to make that happen I needed to be ready for bed as well, and keep the lights low. I also didn’t have any developments to share, and I was a little frustrated about that and didn’t want to write about it.

As you know, we were working with sleep deprivation Thursday and Friday nights. Thursday he slept from 12-6 and Friday he slept from 1:30-6:30. That hadn’t triggered seizures, and being deprived of sleep isn’t a guaranteed trigger for him anyway, so I asked if we could just try a normal night. Normal, however, doesn’t include having EEG leads stuck to one’s head for days on end. I’m just going to describe this for you, and I want you to try to imagine it happening on your own head if you haven’t had this done yourself before. eegelectrode

So, this is an EEG electrode. Before it gets stuck to your head, your head has to be prepared. Painstaking measuring and marking of your head is done, then each spot where one will be stuck is prepped with an alcohol wipe, then some abrasive creamy stuff is rubbed onto each spot to ensure a good connection. Then some goopy stuff is put in the cupped portion and the electrode is stuck to your head. To keep it in place, little pieces of gauze dipped in a terrible smelling glue are put on top of the electrode and some cold air is blown into that little hole on the top of the cupped portion of the electrode to harden the gauze and make sure it is not going to come off. (About that terrible smelling glue – when we got off the elevator on the epilepsy monitoring floor on Tuesday we immediately knew we were in the right place because we could smell the glue. It’s not a nice smell. Anytime someone new comes on the unit and gets hooked up we can smell it all over again.) boy-getting-an-eeg-KD8AYMThe process is repeated again and again until twenty-something of these electrodes have been pasted onto your head. It looks kind of like this boy from the stock photo. After that, gauze is wrapped around your head so you look like you’re wearing a white hat. Then, you wait, go about your activities, eat and sleep. One day goes by, then another, then another. You haven’t been able to wash your hair, or take a break from having these leads on. Imagine how your hair feels when you haven’t washed it for three days. Now imagine how your hair would feel after three days with gluey patches stuck on your head. The goopy stuff in the electrodes dries out after a while and the connection isn’t great, so the EEG technicians come around and stick a probe into the hold on the end of the electrode and squirt some lotion in there. That feels better for a little while. Sometimes the technician isn’t super careful and pokes you in the head with the probe and that doesn’t feel good at all. Has the word “itch” come to mind yet? After about three days the itching gets pretty bad, but you have to keep going. Day four. Day five. The itching is about driving you insane. And you are only eight years old. And you are supposed to be having seizures, and you aren’t, and you can’t make yourself, and your parents are telling you that you have to stay there until the seizures happen. It’s very hard. Such an understatement.

Anyway, that terrible itching was the death knell to my plan for him to get to sleep at a normal time and there was lots of frantic scratching and struggling and extra meds to deal with itching were brought on board. Eventually he got to sleep around 10:30. There were several interruptions throughout the night, including the night staff talking and laughing in normal tones at the nurse’s station which is right outside our door. That caused interrupted sleep, at least for me, numerous times during the night.

The good part is that Daniel is such a charmer and people are drawn to him. His nurses love him and even ask to have him as their patient. He has one nurse, Miss Jen, who he has connected with well, and thankfully she has been on four of the days so far. One of his doctors has been a third year resident doing his pediatric epilepsy rotation. His name is Dr. Mulphur. He’s really nice and Daniel likes him a lot and he likes Daniel too. On Friday he had worked 10 days in a row. He was here on Saturday doing research and he made a point of coming in to hang out with Daniel for a little bit. This doctor has been here for a couple of Daniel’s crying times, and Daniel has reached out to him for a hug and the doctor has been so sweet to try to help Daniel work through those moments. Sadly for us, Dr. Mulphur is moving to his next rotation on Monday, but he said he would still stop by to see Daniel. His visit yesterday was a highlight of the day. There were other people coming and going yesterday which was a nice diversion and helped the day go by.

This morning began with the food service worker waking us up by barging in with a breakfast tray demanding name and birth-date with no apology. Between that and the noisy night crew I did not wake up very cheery. Honestly, at this point I am upset, frustrated, extremely tired and feeling stressed. This is very challenging and we are not getting the answers that we thought we would be getting.

Yesterday morning I encouraged Daniel to take a little nap, and I snuggled with him in his bed to help him doze off. I held his left hand in my hand so I could feel it if he started to seize, and he settled down quite quickly and we both dozed off. Suddenly the lights came on and the nurses came flying through the door. Huh? What’s happening? There were no outward presentations of a seizure, but Daniel’s brain was showing seizure activity. Later the doctor showed me that the EEG showed clear consistent seizure activity for two minutes, but I never would have known. I guess this is sort of good, but this is not the seizure activity we need to see. So we are still waiting for a seizure like what he typically has.

So, that’s pretty much all I can share at this point. I’m pretty emotional today and struggling with how things are going here. I have a lot of questions without answers. We’re not having fun even though we are trying to do fun things to pass the time. I’m feeling pretty desperate at different moments.

Friday – Waiting and saying “Bye” to Dad

Today has been a lot of waiting. We are, at the moment of this writing, still waiting for a seizure. There is nothing we can do to MAKE it happen, though there are many things we are doing to try to make it more likely to happen. Daniel is now completely off his seizure meds. His head has started to itch, as it always does after a couple of days of the EEG leads stuck to his head. This time, he has been given Benadryl to help with the itching. Benadryl can lower the seizure threshold, so this time we are hoping it does. Generally we avoid Benadryl like the plague. Not this time! Bring it on!

Not very much happened today in terms of appointments. Dr. Lachhwani stopped by just to check in and to encourage us. He will not be on this weekend, and he has a trip the first two days of next week so we won’t see him for a little while. He said watching and waiting for the seizures can be a challenge, but it is really important. As we all know, Daniel’s situation with the brain bleed in utero complicates his situation, and raises questions that can only be answered with seizure data, so we must wait for the seizures to come. He said he wants me to know that they will not leave any stone unturned and they will pursue whatever is the best solution for Daniel. At the moment, we just have to wait for it.

Today was hard for Daniel, because he knew that David was going to be flying back home at the end of the day. He was weepy at different times anticipating this and it was hard for all of us, maybe hardest for David, when he headed for the airport. Poor Hannah had a bit of a meltdown tonight too and we spent a long time on a video call. She has been such a trooper at home and has had really a wonderful time with her grandmother (Dave’s mom), but she finally couldn’t take the missing us anymore. So understandable! Keep her in your prayers too, because tomorrow she and David will be preparing for her to go to stay with another family for the coming days. Grammy needs to go back to work, and David needs to fly to California for work. It is hard for her tender little heart which is already dealing with so much.

Tonight we have been instructed to restrict Daniel’s sleep to four hours. I am very, very hopeful that he will have a seizure as he starts to go off to sleep, as the transition to sleep is most frequently when his seizures happen. Then if he sleeps for a short time, is kept up and then sleeps again, maybe we can get two. We need data from at least three. It is critically important for making a solid decision on treatment. Let me just tell you, Daniel WITHOUT seizure meds is my sweet boy who is not irrational and hard to reason with. Seizure meds are a double-edged sword. In a lot of ways they are my enemy. They take away my son’s personality and make it near impossible for him to learn and process information. But, without them, he has terrible, potentially life-threatening seizures, which also do a number on his progress physically and academically. If there is a possible solution surgically which can stop the seizures we need to find it and of course that is why we are here.

Keep praying friends! We really, really need to be upheld in this time. Thank you so much!

Thursday

Today has felt busy. We’ve seen a lot of people and I will explain what I can here while I can still remember it.

Last night was difficult for me. Daniel slept, but he was a bit restless and he ground his teeth like he was going to break them right out of his mouth. This was pretty constant most of the night. Also last evening, because of his fever and illness symptoms, we were put under restriction, which means no one can enter our room without a mask and being gowned and we have to keep the door shut, which is hard for our social guy (the little one, not the big one). They also ordered a nasal swab to see if he has something communicable. Between watching his fever more closely and someone not coming to do the nasal swab until about midnight there were loads of interruptions and I got very little sleep. We’ve been through these multiple day EEGs several times now, and I know this happens every time, but I still always find it difficult when I am so tired and my functional ability gets very low.

Early this morning, around 5:30 or so, an EEG technician came in to improve the connectivity on some of Daniel’s leads on his head. After that he was quite awake, and while we did get him to doze for a little while, it was still an early morning. Cleveland Clinic does a good job of whole-person care, which means we have seen multiple disciplines. Yesterday the social worker was in, today Psychiatry was in, and that was a lengthy meeting. Late morning the epilepsy team did their rounds, and this was a shorter visit than yesterday. Daniel has still not had any seizures, so they had similar data from the night before. It continues to show near-constant epileptic spikes on both sides of his brain throughout the night. Apparently his medication levels had gotten a little high, so they may still be providing good seizure protection. Tonight they will reduce them even more and Daniel is to be sleep-deprived. We are to be sure he only gets six hours of sleep tonight. Part of me wants to laugh out loud at that suggestion, part of me wants to cry. Daniel is excited! “Woohoo! I get to stay up til midnight?!” This is going to be … interesting for sure.

The doctor managing Daniels’ care on the EMU the last two days is Dr. Moosa and you can see a video about him here. He is not quite as warm as Dr. Lacchwani, but he is an expert and has devoted his professional life to this condition, so I trust his guidance. He is not giving me the news I want to hear, but that isn’t his job.

Daniel’s most recent MRI showed an area of the brain which his doctor in Charlotte thought might be the origin of the seizures, and I have been very hopeful that that would be the case and surgery could be done on that area. Dr. Moosa told me today that he did see that area on the MRI and the seizures we describe would not be coming from there. So, that was a disappointment for me.

Because of the ESES I mentioned yesterday, Dr. Moosa wants Daniel to have a genetics work-up and blood was drawn for that today. Also, the neuro-genetics team came to see us this afternoon. There are a couple of genetic conditions that cause ESES, and they need to explore if Daniel has one of them. If he does, there are not surgical options to correct the problem, but there are medications that are known to do better than others for genetic cases of ESES. Also, for one type of genetic ESES, kids tend to outgrow it around their teenage years. For another type, it progresses into adulthood and does not improve. Obviously it is important to know if we are dealing with one of these genetic types of ESES.

Now, here we have a boy with an obvious brain injury with which seizures are often associated, so the neuro-geneticist told us that initially he did not think it would be worthwhile to pursue genetic testing in Daniel’s case, but when Dr. Moosa described Daniel’s seizures to him, and Daniel’s specific profile in regard to learning challenges, etc., he became convinced that we need to pursue this route because Daniel’s profile is very similar to the ESES profile that aligns with these genetic types of ESES. So I asked, is there a correlation between this genetic ESES and having a brain bleed in utero, and he told me there is not. Could Daniel really have both a rare brain hemorrhage and a rare genetic condition? This doctor said yes. When pressed, he said it is not necessarily likely, but important enough to confirm one way or another.

This is complicated, for numerous reasons, but one of the reasons is that Daniel’s blood can’t be sent out for this genetic testing while Daniel is an inpatient, because insurance won’t cover the testing under those circumstances. (Don’t get me started.) So, after Daniel has been discharged, they will arm-wrestle with the insurance companies to get it approved and then have the testing done. So, final determination on Daniel’s treatment can’t be decided until after we go home.

But, we are still waiting to have a seizure, and we need several seizures to confirm that they are coming from the same area in Daniel’s brain. So it is also possible that Daniel has ESES along with different types of seizures resulting from his prenatal brain injury. So, there could be multiple ways the seizures could be treated. The seizures that present in the typical way could be coming from one area of Daniel’s brain and that area could be potentially identified and then a procedure done to address those seizures, and then specific medications given to address the ESES.

Honestly, it’s making my head spin.

We are heading into Friday, and it is still unclear how long we are staying. If Daniel has several seizures tonight and tomorrow, and they are not coming from a focal point, it is conceivable we could leave on Friday night or Saturday and all go home together in time for Dave to catch his flight on Sunday afternoon for his class next week. If Daniel doesn’t seize, I don’t know what they are going to do. Daniel has asked if they will keep us here forever, and we are trying to make that a funny scenario to lighten the mood. If he has a few seizures and there is an identifiable focal point, then I think they will possibly proceed to a surgical procedure early next week, and David will need to fly home tomorrow evening. It’s all so complex, and we are trying to just let it unfold, but for a planner like me and a worker like David it is hard to just wait it out and wonder how expensive a plane ticket is going to be when you buy it two hours before the flight. God knows. He’s got us. Things will become clear. We are where we need to be. That’s all good.

David has been staying at an AirBnB near the hospital and I have come over to it this afternoon to do laundry, rest and get a shower. I needed to get all of this out to settle my brain, and then I need to lay down and sleep. I would greatly appreciate prayer for a good rest time for a few hours before I go back to the hospital for the night shift. Pray too for David as he is with Daniel at the hospital. Pray for seizures, as weird and counter-intuitive as that feels. Pray for Daniel – this is so hard for an 8 year old boy. Pray for our emotions and our interactions as tensions can escalate in a situation like this.

Thank you so much to those of you who are praying and encouraging us. We are very grateful. Thank you for loving our boy!

Wednesday

Today has been okay. Daniel has gotten some sort of bug and has had vomiting, dinarena (as the kids say at our house), and a little fever today. His medications have been reduced today, and I am expecting to see seizures begin tonight. We will see.

He was monitored by EEG last night and we saw the EMU doctor this morning (not the doctor I shared about yesterday, but his colleague on the unit). He indicated that Daniel is having more sub-clinical seizure activity while he sleeps than we previously realized. He seemed to indicate that this is ESES (also called CSWS), which is a challenging form of epilepsy where there is almost continual spiking of electrical activity in his brain while he sleeps. You can read about ESES here, if you want to.  To be honest, I wasn’t expecting this. In the past ESES has been briefly mentioned by his doctor at home, and I think we read a little bit about it, got scared and moved on. So, it really hasn’t been in my thinking. It seems there may be a couple of different kinds or presentations of seizures, which is not at all uncommon. As we approached our visit here, in my mind I had reached some sort of conclusion and as we receive information here, my preconceived notions must be adjusted. This is, of course, the only realistic way this could go because I know so little about what is going on. However, it has thrown me a little and my fear-meter has been running a bit high today.

We continue to have wonderful nurses and good care. Daniel’s night nurse is named Alexa, poor girl, and Daniel immediately asked her to play a song, just like he does with our “Alexa” back home.

Our particular prayer requests for today are: 1) that David and I don’t get this bug that Daniel has. We really cannot afford to have one of us go down with that, so please pray for our health to be good. 2) that we will leave our anxieties with the Lord and just trust in Him and in the process here. We are in good hands all around. 3) that Daniel will have some typical seizures and that good data will be recorded that will allow the doctors to determine what course of action to take.

Your comments and little notes of encouragement and letting us know you are praying for us mean so very much to us. Thank you!

 

Tuesday – Admission Day

Today was a good day. This morning we had an appointment with the doctor following Daniel’s case. He’s a really nice, caring man. He told us, “You are in the office of someone who is passionate about helping children overcome epilepsy. You won’t ever be in the office of someone who is MORE passionate about it.” Here is a little video of him if you are interested in seeing it. It’s only a minute or so, and really shows his intelligence and caring heart. We feel comfortable in his oversight of Daniel’s care and that he will do whatever he can to get at the answers we all are after.

After our appointment we went to get lunch and wound our way to the cafeteria, which is more like the various restaurants at a large airport – including Panera, Starbucks, Moe’s, and I don’t even know how many more. We are definitely in awe of this huge complex. By the end of the week I hope I can find my way around without having to ask too many questions.

This afternoon Daniel got checked into his room, met his nurses and got hooked up to the EEG. The plan will be reevaluated every day. For the first 24 hours they will be monitoring him at baseline – with his current meds on board. Tomorrow they will begin adjusting the medications and prepare to see seizures. Please pray for this. If they can observe multiple seizures this week it will enable them to do different types of tests and also give more certainty about the origins of the seizures. We are very hopeful about this process.

That’s all for now. Thank you so much for caring about Daniel.

In Cleveland

So far our trip has mostly focused on fun time together. Last night we made it about half way and stayed in a hotel in Charleston, WV. Upon Daniel’s request we found a hotel with a pool and went swimming with him this morning. This afternoon we found a movie theater along the way and stopped and watched The Call of the Wild. It was a good movie and added a fun element to the trip.  We arrived in Cleveland this evening and settled into our hotel just down the street from Cleveland Clinic. Don’t let the word “clinic” fool you – the place is huge and goes for blocks!

We got Daniel into bed and I went down to the business center to try to print some documents for our appointment tomorrow. Shortly I got a one-word text from David –
“Seizure”, so I booked it back up to our room where Daniel was having a weird seizure episode, unlike anything we have seen before. The fun part of the trip is over, and we’re getting down to business. This is why we are here.

Tomorrow morning we have an appointment with an epileptologist here and then Daniel is scheduled to be admitted to the EMU – epilepsy monitoring unit. I have updated the “Join Daniel’s Prayer Team” page with prayer points for this week. Please check it out and be praying along with us.

Thank you, friends!