I will see if I can get everything updated right. We are still in the hospital and we'll probably be here a couple of more days. Parker is doing sooooooo much better. He is back to his normal sweet self. He is still wiggly, but much more focused and engaged. Today we pulled out the blankets and pillows and we are playing on the floor. There is nothing like getting out of bed. (He is on continuous video EEG monitoring.)
There is lots of both good news and bad. The great news is that all the craziness this week are not seizures!!!! Phew. What a HUGE massive relief. They actually have not captured any seizures on the EEG yet. This week was very likely due to a reaction to one of the medications.
The bad news is there is plenty of abnormal brain activity that is indicative of seizures, so whether they see one or not, they are likely to keep him on seizure meds for the next few years. (Just different ones, thank you)
They are weaning him off most of the seizure meds he is on in hopes to capture one of the episodes he was having before and at home- specifically where he moves his right arm and smiles with the right side of his mouth. Normally he cannot move his right side well, if at all. I am thankful for phones with video cameras. It is amazing how much help it has been to have videos of all the various episodes he has had. They have been changing and morphing so it was helpful to have both the early and recent variations.
Thankfully these current one are not seizures, but it is likely those early ones were. One neurologist said he was not surprised the seizures started now, as much as he has not had them all along. Don't get me wrong. I hope beyond hope these are not seizures. But with his brain injury and brain activity, they are very likely. And I have to come to terms with that, But... so far these are not!!! So all of the ones 1-2 minutes apart??? Those were NOT seizures!!!! What a HUGE massive relief. It is awful to see your kids get worse and worse, and wonderful to see him come back to himself.
And those have gone away. They were very likely a reaction to one of the seizure medications. The episodes were doubling daily as we titrated up that medication trying to get them to stop. I am so thankful for mother's intuition that said do NOT titrate up on that med any more. And I am so grateful we brought him in. And I am so grateful we did the EEG because a LOT of doctors, nurses and therapists saw those episodes and they looked just like seizures. But they were not! So they were able to stop giving him all of those awful strong meds that knocked him out.
So I am not sure what to hope and pray for. A huge part of me wants him to not have ANY seizures. Yep.
But... If he is going to have seizures, it would be extremely helpful for him to have one sooner than later because then we can be done with the video EEG and go home!!! And we would not have to do the 5 day video EEG in 1 1/2 weeks... They would rather just keep us an extra day or two and capture it now.
So I guess I hope and pray that he will have an episode raising his right hand, and that they can determine for sure if that is a seizure or not.
Parker is back in the ER. They were going to just change his meds and send us home tonight but just before they left he had a seven minute seizure. They admitted him. Darrell is at the hospital with him. It is midnight and they are just getting to a room. I feel so bad for them, but so so grateful Darrell offered to take him tonight.
It has been a rough week with the seizures increasing daily. Last week the neurologist called me and was so incredibly helpful. With the state his brain is in, Parker will most likely have seizures for the rest of his life, but we have to get them controlled. They will continue to try different med combinations until they find one or some that work. He also talked to me about other options such as the ketogenic diet. I do appreciate how proactive they are being. He said he knows the meds are just a bandaid and they would love to find a more permanent solution. He ordered a 5 day inpatient video EEG to pinpoint exactly where the seizures are and what is going on. That is scheduled for April 13th.
He also said that if he has 3 seizures in an hour to take him to the ER. I thought "whatever, they won't get that close." He was only having 4-6 a day. But then this week they started increasing. Tuesday they were every hour. Wed more. Today he had 2 clusters of 3 seizures in an hour, plus all the ones in between. By 3:00 this afternoon I had documented over 12 seizures- and those only include the ones I actually saw, verified and wrote down. He had sooooo many. One of which was 7 minutes long this morning. I had emailed the neurologist that he had 3 in the hour he woke up, but she misunderstood the email and thought it was an improvement to only have 3 in the day. I immediately called the nurse before they closed to clarify and she said to take him to the ER. Three in an hour is an emergency situation. Poor Darrell spent his day off work in the dentist office and ER.
They were just going to change up his meds (which is what I wanted) and send them home, but then Parker had a full 7 minute seizure. They admitted him. It looks like they are going to put him on some heavy duty meds to calm down his brain as they wean him off one drug and put him on another. It is one of the drugs they used to put him in an induced coma before. They are not inducing a coma this time, just calming down the brain. Please pray for my baby.
Darrell gave him a priesthood blessing before they left that had given me a lot of comfort. I am so grateful for the Gospel and priesthood in my home. And I sure love and appreciate my sweet husband that offered to take Parker tonight.
I am not sure what all to write. I keep saying I need to write in my journal, but then I don't and I really want a record of what has been going on with Parker. And ultimately I am keeping this blog for him, for me and for our family.
Parker has been having seizures. This scares me. For 14 years I have watched my nephew, sister and their family deal with the repercussions of seizures and the side effects of seizure meds. My nephew is amazing. He is sweet, kind, innocent and just delightful. That is his true self. But seizure meds can alter that. And that scares me.
Parker is so sweet. He is delightful. He tries hard, smiles easily and laughs when I tickle him or drop a ball. I cannot tell you the weight that was taken off my shoulders (that I didn't even know was there) when his therapist told me this is his personality that we get to keep. I had been so worried. There are stages in brain recovery. Parker's agitation phase (level 4) in the hospital was so hard, yet only lasted 4-5 days and I was subconsciously afraid he had not actually gone through that yet and I was just waiting for it. His therapist that day mentioned that she thought he was on level 6. Unless there is additional injury, he should not go backwards on the scale. REALLY??? What a relief!!!
But that does not include seizures. Or seizure meds. So rewind 3 weeks ago. Parker had surgery (cranioplasty) to put his bone back in on Feb 23rd. It went great! He came home the very next day. He had no complications and was even so alert and engaged. It was wonderful!!!
But then he was unresponsive during dinner one night. He was staring off to the left, smiling with his right side, (he only smiles with his left) then raising his right arm. This repeated. Over and over for several minutes. Then he came right back and was cooing, moving around and eating again. Maybe it was a seizure, maybe not? Hopefully??? I called my sister that night and said "Please tell me seizures are not the end of the world." She told me exactly what I needed to hear. "Seizures are not the end of the world." We had a wonderful conversation. Sometimes, often really, our prayers are answered and the spirit speaks directly through the words of another person.
He had 2 or 3 more episodes that week following the surgery. Then Wednesday (Mar 4), 1 1/2 weeks after surgery he had 4 in one day. Two were during therapy with multiple therapists looking on and they were 4-5 minutes long. I could no longer deny it or put anything off. I had been trying to get referred to a neurologist for a while and finally I just called them myself. I called one that had been highly recommended both by other hemiplegic moms and by my neurosurgeon. Great! He could see us on.... July 22nd??? That was the very earliest he could see us. I hung up the phone and cried.
Then I called the WONDERFUL Nurse Practitioner for my neurosugeon. She listened to my description of everything that was going on. She said she would call the neurologist and get right back to me. She called back within an hour to say she was sending an anti-seizure prescription to the CVS by our house. What a relief. He had one more that evening and I immediately left to get the prescription, so relieved to be doing something.
We followed the precise instructions so carefully, but he continued having 4-5 a day for the next week. The following Wed (Mar 11) I came home from therapy and spent several hours on the phone calling the neurosurgeon, rehab doctor and pediatrician. All three said "take him to the ER." I don't go to the ER lightly and it is really weird to make a premeditated trip. All 3 doctors said to not take him that night, but in the morning when it is less busy. I made some contingency plans for the kids, but I could not bring myself to pack an overnight bag, The next morning I got the kids off to school, was getting ready to go and at the last minute grabbed a toothbrush, contacts stuff and a change of clothes. Good thing. We arrived at the ER and explained what was going on. I felt a little silly having a fairly healthy child there, but then he had 2 seizures in the ER that the nurses and doctor witnessed. I felt a little more validated after that. They admitted us, but the hospital was very busy so we had to wait several hours for a bed. It is really amazing to me how time flies in the ER. Thank goodness for phones. I had so many wonderful friends that took my kids, brought dinner and just supported us. We made it to our new room, got to meet some doctors and even the neurologist came in for a couple minutes before we had to leave for the MRI. Parker had to be anesthetized again but thankfully he came out of it so much better this time!!! I couldn't hear him crying all the way down the hall. He was actually totally calm. I had been able to grab some dinner during the MRI as well. I will forever be grateful for the Ronald McDonald House.
He had another seizure as we were getting settled in for the night. Thankfully I did not have to work too hard to sleep deprive him for the EEG the next morning since he didn't sleep very well. He fell asleep late and woke up really early. They came in the next morning at 9:00 to prep him for the EEG and expected him to fall asleep in less than 1/2 an hour, We tried so hard. He did eventually fall asleep after 1/2 an hour, and the technician thankfully stayed late to capture some sleep waves.
(And it is hard to know where to put this in, but in fairness to my husband and the major stress he was going through-not to complain, but to document.) The Monday following Parker's surgery--so the week the seizures increased--Darrell was rear ended on the way to work and it totaled his car, so while we were trying to figure out the seizures, we were also trying to decide whether to take the salvage or the insurance money and replace the car. We decided to keep the salvage to buy us a few months so we didn't have to replace it until things settled down. While I was in the hospital doing the EEG with Parker, Darrell was at the DMV to change the title and found out it is illegal to drive a salvage in CA, it has to be rebuilt. What??? He spent the weekend car shopping when he was not at the hospital. Thankfully we divided and conquered. He handled the car for the most part, except when we sat at dinner at the Ronald McDonald House and we were able to finally talk about what kinds of cars he was looking at. We normally take months to find the right car at the right price. We have only bought 2 cars in 12 years of marriage and we still have both of them. Well, had...
Back to Parker
A bit later on Friday (I had no concept of time) they switched us rooms and several doctors came in. They kept asking if I had seen his MRI before. I had seen previous ones. Finally when the 3rd doctor asked, I was thinking something must be up. I asked the neurologist if she would go through it with me. She took so much time to explain everything.
It was sobering. The damage is extensive. I knew the left side was annihilated, but I did not understand how much damage there was on the right. That was hard. Really hard.
But I can't think about that. He is already outperforming what his scans say he should be able to do. I was talking to a sweet friend, who again, said exactly what I needed to hear. She reminded me of a song that says "God gave us families to help us become what he wants us to be. This is how he shares His love. For the family is of God." Parker will not become who I want him to be, or his scans, but who God wants him to be. God's hand has been in all of this. I will do the best I can to help him in whatever way I can, but ultimately he is a child of God. And that is all that matters.
Update:
We discharged Friday night. He still continues to have seizures 4-5 or even 6 times a day. They last 4-5 minutes or sometimes more. He is on 2 major anti seizure meds and they are not decreasing at all. These are not fall on the floor shaking seizures, they are focal which means they only affect parts of his body- the right side. But they are seizures none the less. I just want him to be able to move forward and progress. So far he is. He is doing well in therapy. He is making improvements in all three therapy areas. When he is with us, he is super engaged, happy and tries hard. Today I was changing his diaper and he said poo poo poo poo in the cutest little voice. Maybe it was a coincidence, but I was still super excited. He will also match our tone if we sing a long note. That has been fun to play with. He moves his feet and take steps when we hold onto his shoulders or even his hands now. He still needs lots of support, but that is still huge progress!!!
We found a new (to us) car on Saturday. I had a nice conversation with Heavenly Father, explained we were having a really tough, stressful time and could he please help the right car land in our lap. The accident was not our fault at all. We discharged Friday night, and drove our new car home Saturday night. It was the exact price Darrell and I had talked about down to the dollar. And we got to have a wonderful visit with wonderful cousins that happened to live close to the same neighborhood as the car in Meniffee, 45 minutes away from our house. God works in mysterious ways and I am so grateful for the many blessings and rays of sunshine he sends through the clouds.
