Continued from
Harrowing ordeal, part I post.
I followed the ambulance most of the way to the hospital, got there and met Thomas in the PICU waiting room. We knew Ryan, the critical care team and the attending physician were doing a CT scan. The CT scan was ordered to check his head to make sure there wasn't a major factor causing the seizure (think a tumor, brain bleed, etc.) After waiting a while, our nurse came to the waiting and got us and took us back to Ryan's room in the PICU. This was probably around 2 AM. Fortunately, the CT scan came back normal.
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| Shortly after arriving at Memorial |
While in the PICU, they continued sedating him with Propofol and had him hooked up to the ventilator to make sure that he was getting enough oxygen. The ventilator basically breathes for you. They told us that Ryan's left lung collapsed at the ER. The ER that we went to does not have a pediatric unit and they don't specialize in peds, so when they intubated him, they put the tube too far for a child, and it went into his right lung and essentially made his left lung collapse. They told us in the PICU though that they thought his left lung would get back to normal in a short period of time after they were able to adjust the tube.
There was once again a lot of stuff going on around Ryan. Most of the medical team on the PICU floor was at Ryan's bedside taking care of him - administering meds, checking stats, discussing plan of care, etc. It seemed overwhelming to have all these people around doing this and that.
They did a virus swab and when test results came back, they confirmed that he had Corona virus. This meant that he was considered infectious so any medical personnel that came in and out of his room had to put on gloves, a full body plastic apron thing and a mask, even if they just came in to press a button on his IV machine. They would put it all on, press the button, then throw it all away. The medical team felt like the seizure was a direct result of the virus. Remember in the
last post about how I took him to the pediatrician and she told me he had a virus a few days before Christmas? Well he had no fever and was acting just fine so I was not too worried, and then boom, this happened.
At some point in the middle of the night, the EEG tech came to our room and meticulously connected his EEG (this is why his head was in bandages in pictures below). They wanted to hook Ryan up to the EEG to confirm that he was no longer seizing. With all the Propofol and Ativan he was given, he clearly wasn't moving, but that did not mean that his brain was calm as well. By the time the EEG was set (around 4:45 AM), it confirmed that he was no longer seizing. The medical team wanted to keep him hooked up to read his brain activity for at least 24 hours, just to make sure they didn't see anything unusual.
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| A mom never wants to see her child like this |
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| My poor baby |
Ryan had spiked a fever so the nurses began giving him Tylenol to try to combat his temperature. They eventually decided to alternate between Tylenol and Motrin every 3 hours to really knock it out. Ryan's skin felt cool to the touch, and the room was cold, but he was only in a diaper and I wasn't allowed to cover him all the way up with a blanket or sheet because his temperature was too high. It was pitiful.
Sunday night was a long night. Thomas and I were up the whole time. To be honest, when the EEG tech was putting on the leads, Thomas and I were both struggling to stay awake. Monday morning rolled around and we were still functioning on fear and adrenaline. Over the course of the day, the lack of sleep definitely caught up with us both.
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| Utterly exhausted |
On Monday the EEG was not showing any seizure activity. They were still sedating Ryan, and his fever was still coming back when the meds would wear off. We got to meet with Dr. Morales, a neurologist that is in the same practice with our neurologist, Dr. Taft. Dr. Morales talked to us about anti-seizure meds and suggested that we begin adding Keppra to Ryan's daily med intake. Keppra is another med that will help to prevent seizures and it has relatively few side effects. We gratefully took his advice and Ryan's Keppra doses started that day. He will now take both Keppra and Topamax (the drug he has been on for quite a while). Dr. Morales said that we needed to have Ryan sleep in our room for the foreseeable future. Both seizures have happened around sleeping times and he felt like it would be a good idea for us to have a closer eye on Ryan during these times. He also said we needed to get a prescription for Diastat. Diastat is a drug that is administered whenever there is a seizure that lasts longer than 3 minutes. It's a bit of a game changer, since it will have to be with Ryan at all times, in case this were to happen again. Our orders, if we were to see another seizure that lasts longer that 3 minutes, are to administer the Diastat and immediately call the ambulance. He also said that we should not drive Ryan to the ER anymore. He said it's dangerous and parents will get in wrecks because they're so worried about their child and turning around to check on them. Also, a child that is having a seizure could potentially have a blocked airway in their car seat, and an ambulance is a much safer method of transportation. We have our marching orders and will abide without any hesitation. He said the EMS from the ambulance will be able to confirm for us whether the seizure has stopped or whether they need to rush him to the ER. Dr. Morales was very informative and helpful. We were so grateful to get a chance to talk to him.
Throughout the day, I just kept worrying about Ryan. It is so scary to see your baby hooked up to tubes and wires and totally out of it. I also kept wondering if this - the whole experience - is going to be our "new normal". Is Ryan going to have a major seizure event once a month that lands him in the hospital? This question remains to be seen, but my ongoing prayers are pleading for this not to be the case.
MaSha caught wind of everything that was going on and came back to Greenville on Monday. Although I felt terrible that she had to leave Charleston and wasn't going to be able to help Tara and Matt and keep to her original plan, I was really, really relieved and glad to have her in town with us.
Ryan began breathing over the vent on Monday. That meant that the respiratory therapists could tell that he was breathing well enough on his own and he no longer needed the ventilator to help him. The team agreed that he could get off the vent and be extubated on Monday afternoon. Around 2:30 pm, they turned off his Propofol drip so that the sedative would wear off and he would come to. It took around 15 minutes or so. It was so good to see my baby open his eyes again!!!! Around 3 pm they asked us to leave the room so that they could extubate him. They apparently don't want the parents in the room, in case something doesn't go well and they have to put the tube in again - that can be a terrifying and worrisome experience for parents. We waited in the PICU parents lounge until Ryan's nurse came and got us. She put our minds at ease by telling us that he did fine and was breathing OK. They did give him a nose cannula, just to help out in case he needed it. They were continuing to monitor his oxygen saturation as well.
This is what he looked like when we came back in after he was extubated. Still groggy, but at least he's awake and off the vent!!!
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| Done with the vent |
The nose cannula didn't have to stay on long when it was apparent that Ryan was breathing just fine. I think he had it only for a few hours.
Monday late afternoon and evening, Ryan seemed to be grumpy. That is totally understandable, but since he's usually the happiest and sweetest boy ever, I was wondering if it could be a side effect of the Keppra. Or it could be that his head hurt, his IVs hurt, he was tired, his fever was wearing on him, etc, etc, etc. There was no way to know, but I was hoping that it wasn't a side effect of the medicine, since he could be on it for an extended amount of time. I was hoping the bad mood was seizure and hospital induced.
Thomas spent the night at home on Monday night and when he came back on Tuesday morning, he was able to give me the report on Stokes and William. I was missing them so much! He said that they were calling for Mama and then when he was feeding them breakfast, Stokes pointed to Ryan's high chair and was saying, "Ry-Ry? Ry-Ry?" It was like he was asking where he was. This just about broke my heart. I needed to be in two places at once. I was longing to see, hug and kiss those two as well, but obviously needed to be with Ryan at this important and stressful time. As my friend Corey reminded me, Stokes and William have very little concept of time right now. They miss me, but aren't going to remember that I spent a few nights away from them. I, on the other hand, would always remember if Ryan was in the hospital and I wasn't right there with him. She's very wise and I agree 100%.
MaSha, by the way, stepped right in and was keeping Stokes and William in the evenings and mornings so that Thomas could be with Ryan and me at the hospital. I know we could have managed everything on our own, but it made a huge difference to have her there supporting and helping us. We had support from Carole, our families, and other people that offered to do anything and everything that we needed, and we felt the love. I was texting with Ryan's therapists because I had to cancel his appointments each day and they were checking in on him and asking what they could do to help. Our co-workers were concerned and touching base and offering their time or assistance for anything we needed. We were (and are) so appreciative. Having a good support system makes all the difference in the world.
By Tuesday, the medical team was willing to take the EEG off. Ryan's brain activity was normal (for him) and they hadn't seen any seizures. I happened to be at home when the tech came to take his EEG leads off on Tuesday afternoon. Thomas and MaSha were at the hospital and I came home to shower and see the other 2 boys. Ryan was feeling much, much better when his head could breathe again and Thomas was so happy and relieved, he FaceTimed with Stokes, William, Layla (nanny) and me so we could see Ryan. Look at how smiley and happy he was!
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The boys were all so excited to FaceTime
with each other |
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| "Hey Bro, where are you going?" |
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| Mama + Ryan = True Love |
As you can see, Ryan was beginning to act more like himself. The grumpiness was subsiding to a degree and he was being really, really sweet again. He was physically weak, however, and was having a hard time sitting up on his own in bed. I remember wondering whether we would see any sort of a regression in his skills. He had been working so hard with his therapists to make his "inchstones" of progress, I was concerned that he may not be able to do everything he did before the seizure. Of course, I would expect some weakness from him after having a major seizure, being sedated and lying in bed for several days, but I just wasn't sure if that was all it was, or if he had taken any steps backwards.
At this point, he was also getting a lot of fluids through his IV and we hadn't begun feeding him real food or trying to let him drink any liquids yet.
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| Sweet little grin |
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| Finally feeling better |
Later on Tuesday, they agreed that Ryan could leave the PICU to get transferred to "the floor" - that's what they call the rooms that are in the regular children's hospital (versus intensive care). We had to wait for a room to open up, but once it was available, we were ready to move on. The floor is a lot quieter because they don't have to check in on the patients quite as often. The rooms are bigger and have actual doors, instead of a glass sliding door that stayed open the whole time, like we had in the PICU. The rooms on the floor also have their own bathroom with shower. In the PICU, we had a toilet in our room, but it was only covered by a curtain and there was no shower.
They weren't ready to discharge Ryan from the hospital quite yet because he was still battling his fever and with all the fluids coming through his IV, he wasn't eating or drinking much. Both of those elements needed to be relatively normal before they would be able to comfortably discharge him.
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| Being transferred to the floor |
By the time Wednesday rolled around, I really wanted to give Ryan a bath. He hadn't had one since Sunday and his hair was so crusty from the EEG leads and all the stuff they use to attach it to his scalp. Since he still had an IV, I couldn't take him in the shower, so I had to give him a makeshift sponge bath in his bed. It was a total mess, but I was able to get a lot of the junk out of his hair and I feel certain that Ryan had to have felt better after getting cleaned up!
Also on Wednesday, Ryan's fever had subsided, he ate a decent breakfast and drank some milk and water from his cup. It was finally time to leave.
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| Bored of laying in bed and ready to GO HOME! |
He was clearly NOT a fan of getting his IV taken out. Poor little guy. Can you see his anguish?
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| Bless his heart! |
We finally got to put some real clothes on him. He's a tiger through and through.
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| Ryan loves Clemson |
A quick family selfie before we bolted out of there. We were relieved and feeling blessed to be leaving with Ryan!
My little man had several long days and nights. He was poked and prodded. He was sedated and had a machine breathing for him. He was woken up every hour for several days. His brain produced an extended seizure. It was a rough stretch. He was ready for some well deserved shut eye. It didn't take him long to be lulled into a nap in the car.
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| Sleeping on the ride home |
I was so glad to arrive at home with Ryan. Stokes and William were so happy to see both of us. I was ready to get back to our "normal".
This experience was eye opening. His last seizure in November was short and not quite as serious. I worried that I might actually lose Ryan at points during this experience. I also had questions about whether he had a serious lack of oxygen before they intubated him, and if so, whether there be lasting effects. After being home for a while, I found that it did not appear that he was going to have any major effects from the ordeal. He did not seem to have lost any of his skills and after a few days, he was acting 100% like himself. His therapists that he's seen this week have concurred and although he still needs to gain a little strength back, he's still the same old Ryan. Praise God!
We will continue this new medication regiment of Topamax and Keppra. I am more on-guard than before and will be watching him with an eagle eye. Although I can't prevent him from getting viruses, I can watch him more closely and I have a new found awareness of what can happen to him while he has a virus. I don't want to make him live in a bubble, but Thomas and I have agreed that we need to be more diligent with washing hands and keeping germs away when we can. We have a new sleeping arrangement (I will post a few pictures soon) and have a new monitor. We very much want to be the best version of ourselves and try to be the best parents that we can possibly be for Ryan and for his brothers. This whole experience taught us many things, and scared the dickens out of us, but it also gave us an appreciation for how lucky we are to have him.
I want to note that it's now been a week since we've been home from the hospital and about a week and a half since the seizure happened. I'm trying my best to remember all the events and details about this hospital stay, and I did take a few notes while in the hospital, but I am not totally sure that everything I've detailed out is 100% correct. I was so scared/nervous/in shock that a lot of it probably did not sink in, and I missed some medical terms and things that happened that I don't understand or didn't catch. I want to be as accurate as possible, and it would have helped if I'd gotten around to writing this during or right after our hospital stay. But regardless, this is my best recollection. The important thing is that Ryan is home and alright. Amen.
