Progress

Yesterday David had speech therapy and physical therapy. The speech therapist is quite a crackup--he's a "Dr" and a big man with a big voice and big laugh. Anyway, he pointed out that David is a lot more fluent than a week ago. His sentences had been coming out with a lot of pauses and that is much better now.

The physical therapist is a nice woman. She noticed that David is steadier on his feet than last week.

David needs to read and make notes on one of those good books that is not so fun to read: Locke's Second Treatise on Government. I found it on audio which he says is helpful. He's listened to a lot of it but is procrastinating making notes so it will be interesting to see how that goes. His first class where this is due is not till two weeks from tomorrow so he has time.

Photos

David and Aunt Farideh and cousins Kimia and Kiana.


These were taken two weeks ago. David doesn't wear the eye patch any more. His left eye is almost totally straightened out and he is seeing only one image. Yeah!! His left eyelid is still a bit droopy but better than in this photo.


He is much more normal. For a couple weeks after the "incident" he was content to just sit doing nothing. Now he is playing board games and using his computer and staying involved for most of the time. Yesterday after church he went to the singles lunch then played football in the heat, and felt fine. Today I asked him to take over counter-cleaning which is apparently a chore he does not like--next opportunity, he was doing his old chore of unloading the dishwasher. Tomorrow he is starting speech therapy. The plan is to have two sessions a week for three weeks.


Everything looks better to me this week. Thank you for the prayers.

Please keep praying for NO SEIZURES! He has had zero since being in the hospital. Yesterday for the first time he felt a slight aura. Wouldn't it be nice if....?

Boogie boy

Friday we went to San Diego and hit the beach in the late afternoon. David went full steam out to the surf and boogie boarded for nearly an hour with a HUGE smile on his face.

At one point I recalled that three days before we were pushing him in a wheelchair around the zoo and wondered if we were not being careful enough. Well, the zoo is not quite as interesting and I usually feel like I'd like a wheelchair when I am there, so maybe it was a mental attitude difference for David.

We hit the beach again for another hour on Saturday and David did it again. Sunday he looked a bit tired and took a nap and had a small headache, but otherwise, he got away with it!

David's eye is getting better and better though it is still not quite straight. He has been seeing a double image and the second one is at an angle. Today he said the angle is less than it was.

Apparently David's case didn't get discussed last Wednesday so I just requested that it will come up in the neurology doctors' conference on Wednesday Sept 10, and we have a doctor appointment on the Friday after to learn what they recommend next.

Please pray for me to keep trusting in God. I finally have time to process it all and have been discouraged at times. This morning I was encouraged by Isaiah: "When you pass through the waters, I will be with you; and through the rivers, they shall not overflow you. When you walk through the fire, you shall not be burned, nor shall the flame scorch you."

Please also pray with us for healing for David, however it happens. We need wisdom.

Pray for wisdom today

Yesterday David lasted for 2 hours at the zoo and 2 more hours at Costco. Both places supply wheelchairs. He looks better and better.

He starts physical therapy next week and will have it twice a week.

I am not sure how he will do with schoolwork as he will have homework start in 1 week. Reading seems hard for him at this point. Writing may also be on hold for a bit longer. Dr Ross does expect him to make a complete recovery in about 2 months, maybe even less since he is young.

"Trust in the Lord with all your heart and lean not on your own understanding. In all your ways acknowledge him and he shall direct your paths." I am very thankful for those words as they clear away stress and confusion.

This afternoon is the neurology doctors' conference where they go over the current cases. Please pray for God's blessing and wisdom if they are able to discuss David. We go to our follow-up appointment August 26 so we may not hear till then.

Fun at the surgeon's

Dann and Colleen Shubin came to the waiting room at Dr Ross' today for Dann's shunt checkup so we had a good time all together.

Dr Ross was very happy with how David is recovering. He wants David to wait 3-6 months before any more surgery. He also does not want to put in a grid ever again, but said there are other options, depending on what the medical doctors think should happen next. Another interesting detail he mentioned is that the seizures the grid picked up did not match very well with the info they got from the probes in the previous hospital stay in May.

We have had a delightful visit with Bijan's relatives. Rachel went with them to Bijan's brother's in San Diego and we will try to go down on the weekend for more visiting and to get her back. I need to post some photos.

Onward

Tomorrow (Monday) at 1:30 we see Dr Ross to get David's stitches out and hopefully get a bit of insight into what may be next. As the surgeon he will have an opinion on when David will be recovered enough to consider another surgery. He also may be able to assess how David's recovery is going.

In a couple weeks we go to the neurologist who by then may have assessed what this visit gave us as far as seeing where the seizures come from, and what they recommend for the next step.

David is doing quite well. He is getting stronger at walking well every day. He used the walker from Thursday noon till Friday noon and that's it! His eye is still a little askew and he has double vision where the second image is not only separate but also rotated a little. He is not very active and sits still a lot which is strange for him.

Yesterday we went to the Griffith Observatory and David was able to endure for over two hours. Part of the time he was willing to sit in a wheelchair. We went out for a late pizza dinner after that. I thought he would be wiped out but he was up in plenty of time this morning and wanted to go to church.

Footnote to Friday's post: The temperature feels downright cool outside! It's been only 85 or so.

We have had a lot of fun with Bijan's relatives here. They are all sympathy for David and give him lots of TLC. Rachel is getting a huge amount of attention from her two 18- and 20-year old girl cousins. They are taking her with them to San Diego for the week to visit Bijan's brother and his family. She is getting treated like a princess.

Count it all joy

God is giving us more joy. (I'm serious.) Our air conditioner is down for the weekend. "Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance."

After napping all morning David looks even better. His eye is a little straighter.

Walking well

David is definitely walking better and may not need help any more except for using the walker. He is resting a lot and is comfortable and content.

Slower progress

After a few days of getting better rapidly, David has leveled out a bit. He seems to be walking better but needs somebody with him still. He is wobbly but doesn't know it. Today he napped all morning and watched videos in the afternoon. It's about all he has strength for at this point.

This is a challenge for the rest of us to be patient and helpful more than we might feel like. We want to rise to the occasion. Plus it is a joy to have David home and to see his sweet, patient face. He is not demanding and is doing pretty well at waiting for people to help him. Plus God has sent us a Sean angel (on the wings of a Boxster!!) to help us at home today. Tomorrow Grandpa comes to visit.

He's Home!

David came home yesterday in the late afternoon!
His appetite is pretty good and he is doing well here at home once again.
But although he is fine and is not getting worse, he is recovering more slowly now.

So please keep David in your prayers - that he may recover very soon and that we as a family can help David.

Tuesday

David's eye looked more in line today and he seemed to see better but it hurt all day so he had a little pain medication, and an ice pack on it.
His speech is affected so he got evaluated for speech therapy.
His walking is affected so he will go home with a walker and may get physical therapy.
(Don't get a brain injury!)
He also looks a bit depressed though he doesn't think he is. He is on a really high dose of his usual med Keppra and is also taking Vicodin for pain and Decadron which is a steroid to reduce the fluid buildup in his head. So considering all the stuff he's on and what he went through, I shouldn't worry.
This is our prayer list. Thank you so much for supporting us. We'd love it if you'd sign the guest book if you haven't yet.

Wrapping up

Dr Ross this morning told the nurses that David can go home Tuesday. I'm not sure if he will be quite ready, but he must be getting close.

David walked to the bathroom today. He wavered around so he needed to be accompanied. But at this point he is almost completely free of tubes, wires, lines, etc. He is really weak from the whole experience. Making the trip to the bathroom tired him out.

He is not in much pain any more. Today he didn't need any pain med till dinner time. And dinner for him was a cheeseburger so he's doing well with food.

He is still seeing double with his eyes being out of whack. But they looked better to me today. It's a good source of jokes--"you get twice as many visitors"; "better wear your eye patch so you know which bathroom door to go through"; "you get to watch two videos at a time". He loves laughing.

Thanks to all who signed the guest book below. I need to read them to David when he has a bit more stamina. He will be blessed so much. He is blessed.

Sunday post from David

In this photo David is writing the message that appears two posts below this one. He needed some suggestions with ideas but had his own words. He spelled 'thanks' as 'thanges' at first, then looked at me frowning and pointing at it so I told him to use a 'k' instead of a 'g'.

Sunday night status of David

Last night David got moved back to a regular room. (It's the same one he had in May and June.)
He was talking a little. His throat is hoarse but also his brain seemed a bit slow too. He ate a big regular dinner of fish and rice. I wasn't there and was shocked because it was 3 pm when he was given permission to swallow anything at all and the surgeon recommended jello and pudding, not even liquids, because he might be uncoordinated and let them slip down the wrong pipe.
He looks weak and fatigued but he laughs at jokes a lot and seems comfortable and patient. He still needs to be able to walk but was not yet interested.
I'm off soon to go see him and will post more later. Also I need to post about the bits and pieces of how this turned out as a diagnostic.

Thanks for your for prayers

Hi,
I am awage again!
Thanks for your praying!
David

------------
postscript from Dad:

The above is David's first posting, made from the CCU, after being awake again and recovering. It has a few typo's but it's precious.

Patient David

David spent most of the afternoon off the sedative, alert, and wanting the breathing tube out. His hands were restrained which was not his favorite but I asked him to be patient and he was.

They took out the breathing tube around 5:30, after several tries earlier where he didn't breathe well enough on his own. Please pray for him to do well on his own in his sleep.

He was able to speak, sort of. The last few days his brain was not letting him speak but I think now it is his throat mainly, as well as needing to recover from all the drugs and the brain pressure.

He did really well at being patient and I am very proud of him. He had to let me suction his mouth, he could answer me with nods of his head only, and he had to put up with all the restraints and discomfort. When he was a baby and could start feeding himself he would take food I fed him out and put it in again, himself. So I think today was challenging as he hasn't changed much in spirit.

We also need to pray he doesn't get pneumonia. He has gotten pretty messed up with losing his ability to swallow yesterday and with fluid drainage from the first surgery, so he got fluid in his lungs. They are checking him carefully but apparently pneumonia can hit fast.

His low level seizure activity seems to have gone away. When they took the grid out we could no longer see the problematic pattern on the EEG. They put on external electrodes which showed nothing; of course those are of course not as sensitive, but the neurologists think he is ok. And he seems like he is not having seizure distress, just weak and needing to heal up.

This is a good day--did I say that before? It was so good to see David improved so much this morning, and also a great moment when Dr Ross said to stop worrying! Thanks for being with us.

P.S. Sorry to be slow in updating. I held David's hand and read to him all afternoon till I was finally exhausted, then came home and ate with the kids and watched a movie.

Happy doctor

Dr Ross (surgeon) is happy and said I can stop worrying. (Yesterday he said I should worry.) He wants the breathing tube to come out now.

Relatively minor complications: they are starting antibiotics and are a bit concerned about his lungs and pneumonia; his gastric fluids look like he might have an ulcer.

Life is good. God is good.

Good news, he is unhappy

David pulled on his breathing tube, tore off some tape covering his arterial insert, and was combative---all great news!! It means he is recovering quickly and feeling pain and discomfort. They had stopped sedating him for a few hours but had to restart when he did this stuff.

Better

It's 5 am and David has gotten a lot better through the night. He was very unresponsive on his right side (from the grid being on the left brain) and just slightly responsive on the left side. Now he has been able to look at me and nod when I ask him questions. He is tired and not in pain. He could feel the breathing tube that is down his throat so I explained that. His hands are restrained so I had to explain that too. I read him some bible verses and he liked that.

His nurse thinks he will recover slowly and be in the ICU for 3 or 4 more days. Thank God he is gradually but definitely getting better.

Diagnosis update: Dr Maleeva said that they still couldn't quite distinguish frontal vs temporal lobe from the seizure data the grid picked up, BUT she thinks she could have if she could have done the brain stimulation. (That is sending impulses through the wires to the brain to see what happens. He needed to be alert for that and never was.) She said this is not the end and we can keep on if we want to, to try for David to be cured.

We love the guestbook entries. Please sign if you haven't yet. I will read them to David.

Early morning cat scan

Really early tomorrow David will get a cat scan to see if the swelling has gone down. If it has they will try to wake him up and see how normal he is.
Dr Maleeva (neurologist) thinks he is not having any ongoing seizure activity so that is very positive.
This is the end of the fourth day.
God bless you, David.

Sedation

The plan is to keep David sedated for two days so he can recover. They will be able to wake him regularly to check him so I will post updates.

Out of Surgery

David is now out of surgery and back in the critical care room. Nurses told Beth that he 'looks good.' We are thankful that he went through the surgery well. Will keep you posted after we get to see him.

Emergency Surgery

David's condition took a turn for the worse this morning as he began to become very congested. The neurosurgeon just a few minutes ago told Beth that he is worried and is going to operate on David right away to remove the grid. They are putting a breathing tube in him as of this moment. Given his condition the past day or so, it is not for granted that this will necessarily restore him perfectly, so please pray that he recovers. He was very brave about this and did all that could be done, but it appears we have reached a stopping point for now. The Lord knows what he is doing. It is for us to trust and be patient. Thank you for staying with us through this.

Better but still not great

This morning David is much better. He now can open his eyes, respond to questions, and move his arms and legs. He still can't speak, but when he was asked to he thought about it and groaned as a way of saying 'no'.

Last night he was given some medicine to reduce the pressure which sounds like a kind of diuretic. We don't yet know what to expect with his condition for today. They do plan to move him back to the regular room. He had great care in the ICU with a nurse all to himself. Bijan said Nurse Sue was fantastic, very focused.

Thank God, David had no seizure. Dr Ross was concerned he would have a really bad generalized one which could spread the epilepsy in the brain as well as making the pressure and swelling worse.

His issue over the last 24 hours has been swelling which is blamed on having the grid inside his head. His brain seems to be reacting by producing a lot of fluid, which starts shutting it down as far as being alert and responsive and being able to speak and move. He doesn't have a problem with bleeding which would be very bad.

Please pray with us for wisdom today and for David to be safe. Dr Maleeva was going to do the stimulation testing today to see if the bad spot can be safely removed, but David needs to be responsive and able to speak for some parts of that. So it may be on hold for a while. Anyway it is not very important right now compared to what else is going on.