The trip to the hospital was just like any other trip we have made from the ER to the hospital. They got Talen all strapped down on a gurney, loadedhim into the back of the ambulance, and drove across town to the old hospital. We got up to the room and went through all the normal check in stuff. The ativan was still working so while Talen was sleeping, I laid down and fell asleep for about 45 minutes. I woke up just a couple minutes before Talen did and when he woke up his body started to wiggle again. This was a bit strange because normally when we do the ER/hospital thing, once he gets knocked out he is out for quite a while. I was also surprised that he woke up wiggling again too because that was also not normal. They gave him Benadryl around 2:15 and that didn't do anything (Kaddu said it should make him drowsy and help him get some rest). They gave him another dose of ativan at 3 and that didn't do anything either. He wiggled for about an hour and we decided to call Kaddu to see when they could give him more. Kaddu said that he wanted to try giving him toradol (it is not a narcotic but is still strong). Around 3:50, they gave him the toradol and it took about 30 minutes to start working. It didn't stop him wiggling completely, but he would stop then start then stop then start again. I really thought that he was in pain somewhere. About 20 minutes later he finally stopped as long as I sat by him and held his hand. Since he was calm, we decided that it would be a good time to try to feed him. He took a full bottle, yay!! However, mid-feed he started to twitch and by the time he was done, he was in full wiggles again. I was really starting to get concerned. I didn't know why we couldn't get anything to get the wiggles to stop. Around this time I called and told Jay some of my concerns. He shared with me an experience that he had that day. He had been feeling a bit bummed because he felt like Talen should be getting better because he gave him a blessing. I told him that was silly because it doesn't always work that way, and he knows that, but it still doesn't stop you from feeling like you haven't done something right. Anyway, he had gotten a flat tire earlier that day so while he was at the tire place getting it fixed he picked up the Ensign that was sitting amid the magazines on the table in the waiting room. He opened it and started reading one of the articles. I think it was a talk from 2016 by Pres. Uchtdorf. Here are two of the statements in the article that spoke directly to him: "If the course of events had happened in the way
I had wanted them to, I wouldn't have learned to rely not only on the Lord's plan for me, but also on His timing." "I just had to trust in His timing. Blessings don't always come when
we think they will - sometimes not even in this life - but they do come." This was all that Jay needed to feel at peace with the way that things were going. We know that the Savior has a hand in all this and even though that knowledge doesn't help to stop us from worrying, we both know that things will work out the way that He needs them to. I am so thankful for the small miracles that have happened today to help us both to remember that the Lord is aware of us and what we are going through and that he hasn't left our sides, even for one second!
Kaddu finally made it to our room to discuss the plan for Talen. He said that we could try more ativan, but he also said he didn't really know what to do because he also wasn't sure why he wasn't stopping. He asked me at least 3 times what I thought or if I had any ideas on what we should do. I just love Kaddu! He is so unlike most doctors in that he is willing to admit when he doesn't know something. He really believes in a mothers intuition and will listen to everything I have to say. He never discounts me or my feelings and he is always the first to remind me that I know him better than he does so he values my opinion on matters that deal with my son. We are so blessed to have such a wonderful doctor!!
Dr. Kaddu had left the room momentarily and I wasn't really sure if he was going to get the ativan or if he had left to go to work. But when he came back 10 minutes later, I could tell that something was not good. He said that he would try giving him a dose of versed, but if that didn't work, then he didn't know what else to try. We discussed that having Talen continue in the wiggly state was very bad for him and could be life-threatening. He felt that the best thing to do would be to have him flown up north to Primary Childrens Medical Center. That hit me pretty hard! I'm not one that likes to cry in front of people but being strong at times like this can be difficult. I hurried and called Jay and told him what was going on. He asked me what he should do and I thought it would be best for him to come to the hospital in case we had to leave quickly. I really wanted to make sure that if things went bad that Jay didn't missing seeing him.
I'll admit, I've never been the best at saying my personal prayers in the normal "on-your-knees" way very consistently. Most of the time its a quick prayer in my head before I fall asleep. And it's times like this when I really regret that that is the way that I have been. Why would my Heavenly Father want to help when I only communicate with him in times of need? I'm sure that is so frustrating for Him. And even though I am terrible about it, I know that he still wants to help and will listen to me, but I felt so guilty about asking Him to help. But regardless of the guilt I felt inside, at that moment, I needed prayer more than I've ever needed it in my life. And, oh man, did I really pray. Please don't make us go up north! Please let the medicine work! Please let Talen's body stop! Please let me know what to do to help Talen! Please help him to feel peace! Please just help!
We decided to send out a text to our families to have them keep Talen in their prayers. Plus, up to this point, we hadn't really let anyone know that we were in the hospital, so we wanted to make sure they were all aware what was going on. They gave the versed and it slowed him down a bit. Without having to tell him, Kaddu knew that I really didn't want to have to go to Primary's so he decided that since the versed had helped, we would keep using that and see how he did throughout the night.
That night, he was still wiggly, but it wasn't terrible wiggles. He would doze off and sleep a little here and there, but then he would wake up and wiggle again. We were told that he could have a dose of the versed every 2 hours. After the first dose, Talen lasted 3.5 hours until he needed the second. He lasted 5 hours until he needed the third. We were beginning to think that the antibiotics were working and hoping that he would be able to make it even longer before the fourth dose.
Friday morning (the 12th) Kaddu came in just after 7 am. He said that Talen's white count was down to 12 (it was 24 in the ER) so that was really good. His ck level was still 294 (several days later I found out that this was not correct, Kaddu must have looked at the result from the ER, but the count was really 1247 so it was increasing.) We decided to keep watching him for the day then see if his regular meds would help calm him down he could possibly go home tomorrow. Kaddu said that he would stop by after work. Since things were looking good, I called Cathy to have her sit with Talen while I ran to the Elementary to watch Daxton in his Kindergarten Program. Before I left, he had started wiggling again We decided to give him another dose of versed (8:10 am) and an enema to help him poop (he was constipated in the ER so I figured we should probably try to get that out to see if that was cause for some of the wiggles). The versed worked pretty good, his arms were still twitching but his legs and stopped. I helped with the enema and left to head to the school.
When I got back to the hospital he was wiggly again. Cathy said he had a huge bm and it took a while before they could get him changed so we are thinking that may be the reason he started wiggling again. They had given him another dose of versed while I was gone (10:20 am), but apparently it hadn't worked very well. So as soon as they could they gave him another dose of versed. Kaddu decided to call the neurologists at Primary's to see if they would do anything differently and to get suggestions on what we can do. When they finally called back, they recommended that we start Talen on keppra (a seizure/muscle movement medication that Talen has been on before) and a new medication called trihexyphenidyl (an adult medication for movement disorders). If the combination of those two med don't start to help over the next couple days we will have to have him flown up to Primary's. We started both of those medications within the hour. On a side note, I did get Talen to giggle once and smile twice! I don't think that he is in pain anymore, he is just super agitated for some reason.
After the last dose of versed, he calmed down and went to sleep for about 2 hours but as soon as he woke up he started wiggling again. About an hour later he got another dose of versed (1:10 pm). It calmed him for a couple minutes, but then he started wiggling again. Another dose of versed (4:00 pm) calmed him for a minute then started wiggling again. This was pretty much the trend the rest of the day/evening. He finally fell asleep from 9pm-11pm, got another dose of versed (probably around midnight) and slept until 1:30 am (Saturday 13th). At 1:30 we both woke up because he started wiggling again and I noticed that he was poopy. As I sat up to change him, I noticed that the area by his IV was wet. I called the nurse (Jesus) and told him about the IV. He checked it and said that it looked good - it was still in. So we changed his diaper and gave another dose of versed (1:40 am). That did absolutely nothing!! Jesus checked the IV again. It was still in, but he decided to unwrap it and check even closer. They had wrapped and taped it up so good in the ER that it took a good 40 minutes to get it all unwrapped. We discovered that it was still in, but the port at the top had come undone. Jesus did his best to keep the IV in and re-tape it so that it was more accessible and easier to double check while still being secure. Since the port was undone, we assumed that none of the last dose of versed had gone in. But because we couldn't risk overdosing him, we had to wait until the two hour mark to be able to give him another dose. When that hit (3 am), we gave him another dose of versed. It took a little while to kick in but when it finally did, he slept for about 40 minutes. At 4 am they came in to give him his other medicines and the IV had gone bad. The nurse tried to do an IV on his other foot, but as soon as it was in, Talen jerked and it blew the vein. Our problem now was that we can't do it in his hands because his wrists are turned too much. We can't do it on the inside bend of his elbow because he is wiggly and it wouldn't stay there either. With the one foot bad, the only option was his other foot (that he just barely tried) and his neck (I did not want to do it in his neck!) So he checked the same foot again and tried for a much smaller vein. It was no surprise when it blew too. We called Dr. Merkley (Kaddu's partner) to see what he wanted us to do because with no IV, we couldn't give him the versed. He said to wait until shift change at 6:30 to give the veins some time to maybe be good again. He said to have the next nurse give it a try and if she can't do it then call NICU to see if they can do it. If they can't do it then call an anesthesiologist to do it. So we just had to wait to be able to do the IV before we could get any more versed. At 7:30, the next nurse on shift tried to do it on his forearm (they don't recommend doing it there because they could hit a tendon, but at this point, we just wanted an IV in so that we could give him some medicine to calm him down.) I thought for sure this one would work, but that vein blew as well. Call it inspiration or the Holy Ghost or mothers intuition or whatever, but I had that small thought come to my mind that said, "there is a reason why the IV's won't work, maybe he doesn't need anymore of this medicine." At the time, I just discounted that thought because my focus was 100% on getting him the medicine so he could stop wiggling. As we waited for Dr. Merkley to come in, I noticed that Talen was starting to calm. He had gone for 5 hrs now with no medicine and he was surprisingly calm. Dr. Merkley finally showed up and we decided to do the versed through the G-tube (don't ask me why we didn't think of doing this 5 hours ago). He said that through the G-tube it takes longer to take affect and we can only give it every 4 hours instead of every 2. I didn't care, I just wanted him to have some medicine so he could get some rest. They gave him the versed through the G-tube and we both slept for about an hour. When I woke up, I fed him, and the wiggles started back up. At 12:30 they finally got a hold of the anesthesiologist and he agreed to come and put the IV in. He did an awesome job! One try and he got it in the same foot that the nurse had tried twice. For the next several hours we went back to giving versed through the IV, it not working, him wiggling, wait two hours, do more versed, it not work, and on and on. However, while we held him and waited for time to pass, Cathy, Dacy, and I started talking. We discussed the new medication. We called my two cousins, Carrie and Trisha, and Nathan Owen from our ward (all pharmacists), to ask them questions about the new medicine. As we were talking, I was beginning to wonder if he was wiggling because he was so full of medication that he just didn't feel like himself. He might be agitated because the meds made him feel funny. Then I remembered the moment of calm he had after being off the versed for 5+ hours while we were having IV issues. I also recalled that small voice that told me that the IV's weren't working for a reason. Maybe he needed to be off the versed. The more we talked about it, the more it became clear to me that we needed to get him off the versed - it was not helping him. I wanted to make sure that Jay was ok with my plan, so as soon as he got back from Vegas (Kennedy had her last volleyball tournament so Jay and Vic took her down) I told him to come straight to the hospital. Jay and I took a walk around the temple and talked. We both felt peace about taking him off the versed. I knew that the next 6-8 hours would be very difficult but I really thought that this would be the best thing for him. It's funny that while we were discussing getting him completely off the versed, I recalled something that a member of the seventy had said at our most recent stake conference. He said that the Savior will guide you and give you inspiration. However, if you don't act on it, wouldn't He be more likely to send inspiration to someone else who He knows will ask on it. (the context was a little different because he was talking about reaching out to non or less active members, but I think the idea still applies.) If He sent me the feeling that Talen was not supposed to have the IV's because he didn't need the versed anymore, shouldn't I act on that inspiration? I knew this was going to be a big test of my faith, but I felt that it was the right thing to do. So we discussed it all with Dr. Merkley. He said he was fine with us taking Talen off the versed. He also agreed that I needed to follow my gut because we knew Talen better than he did. He supported us 100%. So that was that, Jay and I took turns holding Talen the rest of the night. He had some moments of super hard wiggles. There were time when I really thought that his heart would just burst because he was going so hard. And, I'm not going to lie, there were a couple times that I wondered if I had done the wrong thing and I really hadn't been inspired at all. But, Jay said that the feeling that kept coming to his mind was for us to "stay the course." So, that is what we did, all night long. After the first 5-6 hours we started to talk to the nurse to make sure that everything was ok. She called the pharmacist to see how long it takes versed to be completely out of your system. He looked it up and said that it takes 12 hours to be completely out. So, we at least had a time frame. We were now focused on 5 am, if we could just make it to 5 am. He did start to slow, never stopped completely, but had slowed down a considerable amount. Jay stayed until 5:30 then headed home to get a little rest before taking the kids to church. It was at that point that I noticed he had a fever - a big one! So I called the nurse in. She did the temp on his head and said he was fine. While she was out I grabbed her thermometer and checked it myself on his chest. It was way different that the one she had just taken. So I made her come back in and do it again. I was right, he was really high! We gave him some Tylenol but that didn't do anything. Around 6:30 she finally brought in some ice packs - we started with two. At 7 am (after shift change) our nurse came in and said that the labs they had taken about an hour earlier were back. I asked if he knew what they were and he said that Talen's sodium levels were high. I asked what that meant and he said, "your doctor will be in in a minute." Ya, that was not a good sign! The nurse then came back with 4 more ice packs. Then about 10 minutes later (after Talen had melted the first two) he brought back 4 more! Talen was covered!
Then Dr. Merkley came in and delivered the news. There was no way to
safely take care of Talen here anymore. He would need to be transported to Primary's. I called Jay and told him to come back to the hospital to tell Talen goodbye. Once the doctor got things arranged, he gave me 30 minutes to get home, get packed, and get back before they left. So Cathy and I sped home to pack my bag while Jay and Cory gave Talen a blessing. Cory later told me that Jay gave Talen a really amazing blessing and he wished I had been there to hear it. He said that Jay said that Talen belonged to Him and we were just here caring for him. This was between Talen and the Lord and they would need to work it out. I really wish I had been there to hear it too.
When we got back it was only a matter of about 20-30 minutes and the life-flight team was ready to go. Jay, Cathy, and Cory told us goodbye and we were off!
