“What about the steroids?”

Well, now, you didn’t think I was going to make it any easier for you to get the answer to that question than it was for me did you?

I’ll keep it somewhat brief.

Daniel was admitted to the EMU by a smiling Nurse Jen on Thursday afternoon and was connected to the EEG leads by his buddy Dennis within a couple of hours. We had a robotic discussion with Dr. Gupta a bit later, outlining the objectives for the admission, and headed into our first night.

I watched the EEG monitor as Daniel went off to sleep. I am a novice, of course, but it looked quite a lot smoother to me during the sleep transition than it did a month ago when we were at Cleveland Clinic the first time, so I was eager to hear what Dr. Gupta would have to say Friday morning. His report was very encouraging. There has been a 25% reduction in the ESES (epileptic spikes during sleep) as a result of Daniel being on the steroid. Dr. Gupta wanted to get data over a few nights to see if this change was consistent, and to provide the opportunity to possibly capture some seizures. Again Daniel had no seizure activity during the time he was being monitored.

On Saturday we were able to ask Dr. Gupta questions about what to expect now that we know the steroid is helping. He told us that the degree of improvement is extremely individual. Some kids get no benefit; very rarely complete resolution of ESES happens with steroid treatment; some kids get 25% improvement and no more; some kids get 80% improvement. Most kids get between 25-50% improvement. There’s no way to know what Daniel is likely to experience. He did tell us that he has been on this high dose as long as is best and tomorrow we are to begin a slow decrease in the amount we are giving him which should lead to coming completely off the steroid on June 9th. In the meantime we will be increasing the seizure medicine he is on to try to get a good balance of seizure control from the two medication sources.

Of course we are really happy about the reduction in ESES for Daniel and we hope that during the next couple of months the reduction will continue. We definitely need to try to keep our perspective on the long view because more weeks of steroids is not at all a joyful prospect. Daniel is really difficult to deal with right now and I admit to some fear about getting through these next couple of months when we are home all the time and trying to homeschool the kids and work and manage their outbursts and meltdowns. One interesting thing was how well Daniel slept in the hospital. It was amazing! I’m not sure if it was because he felt safe and I was there in the room or if he has made some progress in this regard or what. I guess we will find out as we get settled back in at home. One thing is for sure – my lack of consistent sleep is completely unsustainable. We need a better schedule/plan, but implementing that when I have to go back to bed in the morning after having been up with Daniel in the night just hasn’t worked so far. Both kids do so much better with structure and structure is much more easily implemented when the parents are rested. We had planned for Dave and I to get away for a weekend at the end of March and I had plans to spend next weekend in the mountains with a friend, but both of these trips were canceled due to CoVid-19, stupid virus. This was really discouraging. Instead of rest, more is required of us than ever before in an already depleted state. I know we are not alone. This is a very weird time in our country and so many families with young kids are all collectively going bananas.

I guess that’s enough for now. We were discharged this afternoon around 2 and are driving back to South Carolina. I am not sure we are going to make it all the way tonight – it is already 7 pm and we have over 300 miles to go. How to find a CoVid free hotel … hmmm.

Living in the Light this Easter

I am writing this morning from the 5th floor of Cleveland Clinic’s M Building on what is arguably the strangest Easter morning most of us have ever experienced. Our family is separated – Daniel and I in his hospital room, David in an AirBnB nearby, Hannah with a friend’s family back in Rock Hill. Guess which one is having the best time?! Yep, Hannah for sure! We have been tuning in to services from our churches and trying to keep in mind that even on this very strange day Easter has broken through, just as Christ broke through the bonds of death and the stone covering the grave so many years ago.

I have been wondering if, maybe in this time of social distancing and quarantining, we might most be able to identify with the disciples and the people who were closest to Jesus. On that first Easter weekend the disciples were reeling, stunned and in fear, and then bewildered and confused, before they got to the point of rejoicing. They had watched their dear friend and leader be killed on Friday afternoon. Shocked and grief-stricken they spent Saturday laying low – afraid of what might happen to them if they were out and about. Then Sunday morning came the discovery and subsequent joy mixed with confusion that Jesus was alive! They didn’t yet understand all that it meant, all that he had done for them that weekend. It would take time for him to explain, and for them to come to understand the magnitude and significance of Christ’s death and resurrection.

What about you? Can you identify with those feelings this weekend? Confusion? Fear of being out and about? Feeling like you’ve never experienced a weekend like this before – what is typically a celebratory weekend, but has taken this strange, surreal twist in our current circumstances? I sure have been having those feelings. We have the isolation, the separation, the confusion – on multiple levels. Confusion about our society, what will it be like on the other side of this virus? What will happen with school for our kids? How will we get through the summer of kids home, everything cancelled? (I feel my anxiety rising just thinking about that.) But we also are experiencing confusion on a more personal level – what is going on with Daniel? How long will he be on the steroids? What is the right solution or treatment for his seizures? How much longer can we handle the side effects?

As we have been processing the results of our last trip to Cleveland, and the disappointment that went along with it, and the struggle of the side effects of the steroid treatment, and the wondering concern about Daniel’s future, I have used a technique that has helped me through the years when I am processing something I am struggling with. In the past at times I have actually written out columns on a page – “What I Know Is True” and “What I Know Is False” and sometimes a column “What I Am Feeling”. Invariably I end up identifying my beliefs about God and what I know from Scripture to be true and false. For example, when God doesn’t answer my prayers the way I want, I may put in the “Feelings” column things like, “I am mad at God”, “I am disappointed”, “God doesn’t care about my stuff”, “I am confused”, “I am scared!” And then in the True/False columns I write what I know to be true or false, based on God’s character that I have learned about in the Bible and Scriptures in general that speak to those emotions.

You may ask “Why do you think the Bible is even true? Why do you consider it a reliable source?” For many people these days it is considered only an ancient text with little to no relevance for our current experience and certainly not anything reliable or authoritative. Some of the reasons that I believe the Bible is reliable and true are these: The Bible was written over the span of 1500 years by more than 40 individuals from different walks of life – some scholars, some commoners – who were separated in time and space and yet their message is remarkably consistent, improbably consistent, perhaps impossibly consistent, without the inspiration of the Holy Spirit. The Bible frequently uses prophecy, and the prophecies have come to pass (some are yet to come to pass, but many have been fulfilled) and only a God who knows all things could inspire prophetic scripture hundreds of years in advance and then very specifically fulfill it. The message of the Bible is deeply personal, even in its breadth and depth, and it points the way to the answers to the issues of our lives and most importantly to the salvation of our very souls. For these reasons and others, I do believe the Bible is the Word of God and it does set the standard and is authoritative in all of the areas it speaks to.

And so, when we left Cleveland last time with our biggest prayers for the trip unanswered in the way we had hoped, it was once again an opportunity for me to bring these feelings and doubts and questions under scrutiny. I didn’t write them out specifically as I have in the past in other situations, but I did remind my heart of truths that have supported and sustained me in the past and that I cling to now and which give me hope for the future. Does God not care about my son? I know from Scripture and from the story of Daniel’s life so far that God loves him profoundly, as he loves me and my husband and our family. I know from Scripture that God knows tiny details of our lives – even the number of hairs on our heads – and if it matters to him to keep track of all that stuff (and to do so without effort), then the number of seizures Daniel has and when and how they impact him also matter to God. Did God just not hear our prayers? I know from the Bible that God always hears when we talk to him. God is never too busy, or distracted, or listening to music, or planning the next century such that he doesn’t hear little old me when I pray – not to mention that I spread far and wide our need and Daniel’s testing and had people all over the world praying for Daniel. There’s no question but that God heard our prayers, every one of them. So why didn’t he do what we wanted? Why were there no seizures while Daniel was being monitored by EEG? Why was there a seizure as soon as he was disconnected?  If God controls all these details of our lives then that just seems mean! Well, I had that thought, but I know that the personal character of the God of the Bible does not include being mean. He is always loving, always kind, always just, always holy and always wise. And therein lies the answer to the whys. “I don’t know” is not a satisfying answer. But in addition to knowing that God is always and infinitely wise, I also know that I am greatly lacking in wisdom comparatively and I will either fight for understanding and demand that I get the result I want, or I must bow my knee to the most loving and wise and powerful being that ever existed and accept that he is working out something in a way differently than I expected or hoped.

And that brings me back to Easter. The expectations and hopes of the followers of Jesus Christ during his time on earth did most certainly NOT include watching him be arrested, tried in a court of mockery, and hanged on a Roman cross just a week after he had been praised in the streets to shouts of “Hallelujah! Blessed is He who comes in the name of the Lord!” and he was even called the King of Zion. Talk about confusing! Talk about struggling to understand! Talk about greater wisdom than our own. Talk about the mystery of the Gospel. God is not a God of ease and sweetness and rainbows and unicorns. He is a God for hard times, a God for times beyond our understanding, a God of mystery, and yet a God who makes himself known, who makes his character clear through the outworkings of Scripture and circumstances in our lives. So in our current struggle, which is very small in the big picture of the world but very big in our experience, I bring these questions and these struggles and these hurting feelings to the light of God’s Word, and I find it is the same light that came streaming out of the open tomb in the garden and cascaded around Mary and Peter so many years ago. It is a light that truly illuminates the troubled mind and brings peace to the struggling heart. It is the light of the risen Christ and in my dark and stumbling way it is the light I turn to, the light I cling to, even when the extent to which I understand what is happening in my life and the life of my son is still quite shrouded. HE is not, and for that I rejoice.

He is risen!

He is risen indeed!

Life in the Crazy and Back to Cleveland

We returned from Cleveland Clinic late on a Thursday night, and Friday was a teacher in-service day, so there was no school. Little did we know that there would be no school again for a long, long time! Daniel hasn’t been to school now since the end of February!

Launched involuntarily, with the rest of the country, into a social-distancing, mostly isolating, home-schooling world with one child who had been well-loved and cared for, but missing us, and the other child on steroids affecting behavior, emotions, eating and sleep, with two already exhausted parents has been very, very hard. Having everyone home all the time has been very hard on David who regularly works from home anyway, but in healthcare IT has been even busier than usual, and now has the constant interruptions and noise of the family.

Daniel’s sleep has been severely impacted by the steroids and every single night has had multiple interruptions. Most nights I have been staying with him for at least half the night to help to calm him. David has very kindly let me go back to bed in the mornings while he manages the kids early in the day, but we are on a trajectory of progressively greater sleep deprivation overall. My work has been significantly impacted and I am just doing what I can to accomplish time-sensitive tasks. Daniel continues to be very emotionally reactive – with highs being very high and lows being very low and irritability, angry outbursts, name calling, throwing things and the like happening multiple times most days. He’s also eating like never before – asking for things like mac and cheese and cheeseburgers for breakfast. His face is looking rounder, as is expected when on steroids long-term. Thankfully we have Daniel’s aide for 20-30 hours each week. This is a huge help, and you might think we shouldn’t have any issues with that kind of help, but she can’t be responsible for all of the disciplinary intervention, mediating sibling conflict, and home schooling, meal planning, activity planning, etc.

I see comments online about what kinds of things people are doing with all of this “extra time” they have being quarantined at home – house projects, baking, cleaning, learning new languages and taking up new hobbies – and it blows my mind! Really?!! None of that is happening here, so don’t be looking for any amazing sculptures or posts in Lithuanian from this household! That’s not to say there is nothing good happening here – we’ve been reading a chapter together in a book each evening before bed, the kids have had some good “Art” classes and made some nice paintings and they’ve been fed every day and even dressed some days which I’m considering an accomplishment. We also have friends who live right across the street from a very lovely quiet park and we have gone there numerous times where the fresh air is wonderful and the kids have appropriately distanced interaction with a friend. This also helps David when the rest of us can get out of the house and he can work in peace for a bit.

In regard to Daniel’s seizures – it has been concerning that he has had four seizures since the EEG monitoring at Cleveland Clinic. This is a pretty high rate of frequency for him, and we don’t believe that we are on the right medication for controlling the seizures. When we were there last month and Daniel was started on the steroids we were told that in 4-6 weeks he would need another 24-48 hour EEG to assess the effectiveness of the steroids. If the nighttime ESES pattern looks better, he will continue on the steroid for a six month course. If it does not look like it is being effective, he will come off the steroid. We had an admission scheduled for April 21st back at Cleveland Clinic, but last week we decided to move it up. Our rationale originally was that we would give it maximum opportunity to see if it is working. But, it has been so hard and we are so tired that our rationale is now that if it isn’t making any positive change then we need to know that as soon as possible so we are going back this coming week. We leave on Wednesday and Daniel will be admitted on Thursday at 1:00 p.m., right in the middle of Nurse Jen’s shift! She knows we are coming and both she and Daniel are very excited to see each other again. We do have a little bit of concern about going to a large hospital in the midst of this CoVid-19 pandemic. We will be taking precautions, of course, and would be grateful for your prayers for our protection on this trip.

Daniel on Mission

img_3990This is the post I think those of you who know Daniel will really enjoy. As we all know, Daniel has some limitations, but what Daniel has in abundance is personality and usually a good bit of joy. Daniel loves people and, after a few minutes, people usually love Daniel.

When we arrived on the EMU (epilepsy monitoring unit), they were ready for Daniel, with a room very near the nurses’ station that had a sweet, personalized name tag outside the door. Before we even got to our room Daniel was greeting people and asking questions. Some of the rooms had doors open and Daniel asked about the kids in those rooms. The room directly across from Daniel’s room had a little baby in it, and Daniel was concerned about that baby right away. From time to time that first afternoon, we heard the baby cry and at some point the baby’s parents left to get some dinner. The baby was with a volunteer and nurses were keeping a close eye on the baby, but Daniel kept asking when the baby’s parents would be back and after a while he couldn’t bear the baby crying any longer, so he prayed for the baby. He prayed that the baby would be comforted and that the baby would get to go home soon. He was thrilled the next morning when the baby was discharged to go home.

The nurse on duty when Daniel was admitted was Nurse Jen, and we were blessed to have her as Daniel’s nurse for four or five days of our stay. Daniel asked her lots of questions as she was settling us in our room and within minutes she was saying that she loved him already.  Soon, it was time for the electrodes to be placed on his head, and the EEG tech, Dennis, stopped by to meet Daniel. Daniel struck up a conversation with him and soon they were buddies. Dennis stopped by numerous times to say hi to Daniel and, of course, from time to time to freshen up the leads. Another EEG tech, a young guy named Chris, also was drawn in and became Daniel’s friend.   There was a third year resident who was our primary point of contact those first few days and Daniel established a really friendly rapport with him as well. He was there for a few of Daniel’s tearful moments, especially when Daniel was sad about David having to leave on Friday afternoon. This young doctor held Daniel’s hand and patted his head and was a real source of comfort for Daniel that day. He stopped in again later to check on Daniel before he went home, and he even came in on Saturday when he was at the hospital doing research to check in on Daniel. He ended his rotation on the EMU that Friday, but he even took the time to check in on Daniel on Monday, even though he was beginning another rotation in another department that day. These connections speak to the wonderful staff at Cleveland Clinic, but they also speak to Daniel’s personality and how people are drawn to his cheerful, sweet and funny self.

Most of you know that Daniel loves music, and I shared before about the music therapist and how thrilled Daniel was that she came to see him with her cart of really great instruments. She was no slouch – she really played those instruments and they were in tune and she could sing. On top of that, when she found out that Daniel liked worship music, Chris Tomlin in particular, she said, “I love Chris Tomlin!” At that point I knew Daniel would be well occupied for a half hour or so and I headed out to the lobby to do some work. When I came back they told me that I had just missed Daniel’s concert! He had called all the staff to his doorway and with the music therapist he sang two worship songs for them – Grace on Top of Grace and another one which I can’t recall. The day I met with Dr. Moosa at length and received disheartening news I had gone out in the waiting room and had a hard cry. When I came back to the room Daniel and the music therapist were just finishing up and Daniel asked me to sing one more song with them. “Mom, sing ‘Need You Now’ by Plumb!” Oh my. I couldn’t get through it without tears and had to explain to Daniel that I was crying because that was how I was feeling right then, but I knew God was using my boy in that moment to get me to acknowledge and even sing out the cry of my heart. Click the title to hear the song on YouTube.

Well, everybody’s got a story to tell
And everybody’s got a wound to be healed
I want to believe there’s beauty here
‘Cause oh, I get so tired of holding on
I can’t let go, I can’t move on
I want to believe there’s meaning here
How many times have you heard me cry out
“God please take this”?
How many times have you given me strength to
Just keep breathing?
Oh I need you
God, I need you now.
Standing on a road I didn’t plan
Wondering how I got to where I am
I’m trying to hear that still small voice
I’m trying to hear above the noise
How many times have you heard me cry out
God please take this?
How many times have you given me strength to
Just keep breathing?
Oh I need you
God, I need you now.
Though I walk,
Though I walk through the shadows
And I, I am so afraid…
Please stay, please stay right beside me
With every single step I take
How many times have you heard me cry out?
And how many times have you given me strength?
How many times have you heard me cry out
“God please take this”?
How many times have you given me strength to
Just keep breathing?
Oh I need you
God, I need you now.
I need you now.
Such a great song, and such incredible timing for Daniel to ask for that song right then. He didn’t know I had been out in the lobby crying my heart out. But God knew.
img_3977I think I also shared either on FaceBook or in an earlier post that Daniel had organized an ice cream party on the unit. It was really something else! The day before, he had asked Nurse Jen and the personal care aide if they could have an ice cream party and they said that after lunch the next day they could have an ice cream party. So before the designated time Daniel asked Nurse Jen to go around to all the kids in their rooms and ask them 

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if they wanted ice cream during the ice cream party. Now, this is such a fun and crazy idea because all of the kids are confined to their rooms because they are all hooked up to the EEG monitoring, so Jen went around and told the kids that Daniel was having an ice cream party and would they like ice cream. Between the staff and Daniel and me and some of the other kids, seventeen people had ice cream “together”! This was just the little ice cream cups that they have in hospitals, but it was fun and joyful and just classic Daniel.
On our last couple of days, Daniel started to make some crafts, cutting and tearing paper and glueing it together. Then, he wrote on his creations and gave one to Dennis and one to Chris and two to Nurse Jen. Then he started making more of these and wrote on them “Daniel loves kids” and asked Jen to take them around to the kids in the other rooms. Honestly, I’m sure they’ve rarely had a boy like Daniel on the floor spreading love and joy, singing and shooting little playdough balls off a catapult from the door of his room.

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As Nurse Jen ended her shift the evening before we left, she came in to say good-bye to Daniel. Jen had been very open

img_4017 about how much she cared about Daniel, and that day that I had been crying in the waiting room, suddenly Jen had appeared with a box of tissues and not only let me cry on her shoulder, but cried right along with me. That last day when she came in to say good-bye, she was in tears again. She said, “I really needed him in my life right now. I’d been questioning things, and wondering if what I do makes any difference. He has changed me.” It was really beautiful and for all the hard parts of the trip I knew that in some ways Daniel was there on a mission and I was just along for the ride.

That’s how it is with Daniel. He is a little minister of joy and he touches people and loves people wherever we go. It is such an unbelievable privilege to be his mom.

So, now what?

That is the question. I imagine some of you are wondering what is next, and we have certainly been discussing it at length here at home.

One thing we know is that we will be going back to Cleveland Clinic in mid-April for another EEG – this one 24-48 hours to see if the steroid is helping with the ESES. While we were there, we asked about having this done in Charlotte so we wouldn’t have to travel back up to Cleveland, but since we have been home we have talked this over a bit and since it seems that getting records from Charlotte to Cleveland was a bit of a problem, and we really need the Cleveland doctors to read the actual EEG, not just the report, we decided it would be better to go back and have it done there.  If the steroid appears to be reducing the ESES activity during sleep, then Daniel will remain on it for about six months.

Speaking of steroids … wow.  We hear things described as being “on steroids”.  I looked that up, and the Free Dictionary says the term “on steroids”  means “In a bigger or more intense form than normal.”  An example I saw was “They sell cinnamon rolls on steroids.” I imagine those cinnamon rolls are huge with loads of icing and lots of cinnamon. Well, let me tell you, Daniel on steroids is a force to be reckoned with, and not necessarily in a good way. He is feeling his emotions larger than life – the good, the bad and the ugly. He is talking faster than we have ever heard and repeating himself over many times when we haven’t had hardly a second to answer him the first time.  If something is a little sad, he has cried and cried and been hard to console. He is also struggling with sleeping, and waking up during the night at times with great fear. He is jumpy at the slightest unexpected sound. We are very hopeful that this will settle down after he has been on the steroid for a couple of weeks. If it doesn’t, we are not sure this is a viable long-term treatment, but we very much want to give it a chance to work. It is quite possible that the ESES is significantly affecting Daniel in his ability to learn and focus and if there is a way to calm it down, or stop it, it could help him a lot.

We are struggling with whether or not the anti-epileptic drug (AED) that Daniel came home on is the right one. He had another seizure on Monday, which makes two in the last week since he has been back on this drug. I have spent a number of hours since we returned home putting a spreadsheet together of Daniel’s seizure history and the different medications he has been on for seizures, and he has had a lot of seizures on this particular drug. We are wondering if it might be making things worse. We have made a request of the doctor in Cleveland about another medication Daniel used to be on which may have controlled seizures better and had fewer side effects. We are wondering if he can go back on it. That is not typically something that is done – when you move on from one AED, it is typically considered a “failed drug” – but the side effects of all the other ones have been impairing. The one we are asking for reconsideration also has side-effects and is most typically known for the rage associated with it, so it isn’t perfect either. We have also gone back and forth on the concept of taking him off the AEDs entirely and just treating his seizures with rescue medications when they happen, because we are having to do that anyway. If the AEDs aren’t really working, and may be causing more seizures (after all, he didn’t have any in the hospital when he was off all the drugs) and we have to give the rescue meds anyway, and the AEDs have impairing side effects then, why not JUST use rescue meds? It doesn’t seem like an unreasonable question to me, but the doctors don’t go for it. I would like a scientific explanation for that, not just a statement that they don’t do that, which leaves me wondering if it is more about liability. Anyway, we are waiting to hear back on that question.

We don’t feel that we left Cleveland Clinic with clear-cut answers, and there wasn’t an obvious path forward, but forward we must move because time carries us on. David and I hash things over at night after the kids are in bed, and it is an emotionally taxing time for us. Daniel’s situation is serious. Maintaining the status quo will leave him functioning at a kindergarten-first grade level for years to come, and everyone who meets Daniel assesses him as a smart boy, and we know him to be that, but the epilepsy is SO IMPAIRING! It is reaching a desperate level for us, because his education is at stake, and even his life is at stake to some degree, because of the risk of sudden death during a seizure which is most likely in night-time seizures, the kind he has most often. Daniel knows it is affecting him, and he has expressed more about wishing he didn’t have epilepsy or cerebral palsy. These are heart wrenching conversations. The other night as we put him to bed he said he hopes he goes to heaven soon so he can get a new body. This is terribly painful stuff for us as his parents. So, the answer to the question “what now?” is unfolding gradually, with little pieces that are certain, and a whole lot that is uncertain.

Thanks for caring about Daniel, and about our family. Please continue to pray for us and for him.

All Home

We are glad to all be together under one roof (our own) tonight. Daniel and I were safely delivered home around midnight last night by our dear friend, Kristi, who served us so beautifully flying up to Cleveland Wednesday afternoon and driving us all the way home on Thursday.  I picked Hannah up around lunch time today and David got home from his class in California just before dinner time tonight.

I just want to be sure to express our deep thanks and appreciation for all of the care and notes and prayers given for our family in these last couple of weeks. That Hannah came through this time so well is a testament to Dave’s mom’s love and care, and the love and care of two families in our church who kept her during the second week. We are so grateful.

We have a lot to process – information, medication adjustments, Daniel’s health, and a jumble of emotions, a lot of them not very sweet or pretty. I am exhausted physically and emotionally and I am feeling really sad and sometimes frustrated and quite bewildered. So, please know that if we seem negative or aren’t perked up by words of encouragment, it isn’t that we don’t appreciate them or aren’t grateful for all that so many people have done for us. We’re just really hurting and trying to figure out what to make of how things transpired.

Writing here has been a way for me to process what has been happening, and in some cases to try to remember information that was coming in quickly.  I appreciate those who have followed along and have shared that it has been helpful and especially that you have shared with others and have prayed for us together. It means a lot to me and many of your comments have brought me to tears by their kindness and thoughtfulness. Thank you.

There are several things I want to write about, and will hopefully have time tomorrow or the next day. For those of you who know and love Daniel, you will really enjoy reading some of it. For now, we need to sleep. Bless you, friends.

 

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.