May 17, 2016 If Only We Could Better Understand the Captain
I started getting a head cold over this past weekend. I was fine one minute and literally a minute later my throat was on fire and within a few hours every –part on my body hurt, even my hair. Thankfully the aches only lasted that one night, however by the end of each day it feels as though I can’t breathe through the swollen larynx of my laryngitis. If I speak in louder than a whisper, I cough. As a result I have not spent too much time in direct contact with Jonah. It has been such a blessing that we have had to wear masks, gloves and gowns or I wouldn’t even go into his room. By yesterday afternoon I had decided that I would not go back after dinner and then I got a call from my daughter telling me that Jonah was asking for me. I turned to Tom and told him I just couldn’t unless he gave me a blessing. I was feeling so weak and tired. In my blessing he commanded me to be healed and blessed me that I would have energy while I healed. We walked out of the house to get drive through food and head to the hospital. I forced myself to eat half of the sandwich and then headed to Jo’s room. Within just a few minutes of being in Jo’s room it occurred to me that I was no longer weak and exhausted, I felt energized and able to rub oils on Jo’s feet and massage his legs. I had been so worried that I would have yet one more difficult night sleeping and instead I laid my head on my pillow and didn’t awake until morning.
Tom was able to stay with Jo last night, which always gives me peace. Jo had said he would like to listen to music instead of having the TV on, so it was my goal to work that out today. (When I say, “Jo said” it is not as simple as him saying, “Hey, this is what I would like”. It is a process of asking 50 “yes” or “no” questions and waiting for him to squeeze my hand or raise his eyebrow for “yes” and close his eyes for “no”. Sometimes he is so restless and I feel his anxiety. He needs something or he is trying to say he is in pain. Then it is another 50 questions to find out what is hurting and how intensely it hurts in order to get the right medication to help. It is during these moments that I feel myself coming close to imploding from the intense anxiety I am feeling for and from him. I want, so badly, to understand his need or desire and do whatever it is and I just can’t understand what it is that he wants. It honestly hurts me to see his look of despair.) Back to Jo’s music. I had to find a device that could use the Internet for Pandora and decided an iPod would be the ticket. He has seemed pretty content listening to his music softly playing.
It took me longer to get to the hospital than usual and just before I got there Austin called to say that Jonah had thrown up his whole feeding. I flipped out! He hadn’t had a problem with nausea this whole time except that initial night. I thought there was really nothing different about his meds, in fact, I thought he was on far fewer now. He had started a new med a few days ago that helped regulate his heart rate and then they upped the dosage yesterday, I wondered if that could be it. Because I couldn’t find a good reason for his nausea my mind raced with all of the worst-case scenarios, which have been discussed with me throughout his time in the hospital. The most critical was that his shunt could have failed. I quickly reviewed what I could remember about those behaviors you would see with this issue, even though he didn’t appear to have more of the symptoms, I worried that maybe it was just the beginning of the brain swelling again.
As I got to the hospital his physical therapy doctor met me in the hall. He was just coming in to look at Jo. I told him my concern and he reassured me that if it were his shunt we would see some other signs as well. Dr. Physical Therapist then went on to his next important business and his reason for coming in. He felt I had misunderstood his comments about Jo’s reflex issues. (This has got to wear out The Brilliants to have to help us understand) He assured me that Jo has been making wonderful improvements, and he wanted to educate not only me, but also the nursing staff on what we were seeing with these primitive reflexes in Jo. They are significant because they are reflexes that are only seen in infants and people who have suffered a brain or spinal injury. These are symptoms that they don’t see very often and he wanted the staff to see what they looked like. He also helped me understand that just because Jo has these, it does not mean he will not progress or gain proficient skills if these reflexes remain present or diminish. Dang, I felt so much better after the explanation. As I worked with Jo today with his feet and legs, the reflex was barely visible!!! I am so happy about that.
We didn’t get to take Jo outside today because he had thrown up twice this morning. The nurses said that should he throw up and aspirate while we were outside, it could be scary. Jo was also extremely tired and not as responsive. He seemed bummed today. This all makes me feel like I am going to go crazy! I can’t stand that Jonah cannot communicate his thoughts, feelings, struggles, and pains. I can’t stand that he might be feeling tortured at being locked in a body that he can’t understand why it isn’t working the way he wants and needs it to. I have begged the Lord to help me interpret what Jo needs, to help me know what he is feeling. I have prayed to help me know how to succor him and for him to know how much he is loved. I don’t want him to suffer needlessly, it could absolutely make me go crazy!!!
May 18, 2016 WE NEED COURAGE
Sometimes the courage it takes me to get through my day, takes more emotional and physical energy than I possess on my own.
While I was sitting waiting and waiting at the Insta-Care trying to see a doctor about my throat and ears, I received a phone call from my dad telling me that he had been ushered out of Jonah’s room because they were putting a camera down Jonah’s throat. They didn’t give my dad any other explanation. I became instantly frustrated and mad! If Jonah can’t speak for himself, then they better dang well speak to me. You don’t get to just shove crap down someone’s throat, unless it is a life-threatening situation, without talking about it!!!! My dad had said that the speech therapists were in the room giving Jonah all kinds of stuff to swallow and drink. Oh my word I was livid!!! I have watched the therapists work. It’s, “Okay Jonah were going to do this now” and “Jonah were going to do this”. There is rarely a, “Jonah, do you understand? Or “Do you want to do this?” or “Are you nervous about this?” or how about, “Do you need a break for a minute?” I called the floor and asked what was going on. I was told that they needed to see if he was swallowing correctly. My next thought was, if he doesn’t understand what is going on and there is no one there to hold his hand or someone there that he knows and trusts to care for him . . . that is FREAKING SCARY for him!!!! Then, just as that team left, Jonah threw up again!!! This is day two of this crap. So, what is it? What medication has changed? What medications are they giving him? How much? Are they giving it to him on an empty tummy? On top of all of this, his bum and upper thighs are fried and burning him from the number of loose stools he’s had. He was also able to point to his catheter, which he signaled was hurting him. His nurse worked to make the catheter more comfortable and she showed me that she was using a barrier cream on his bum. It’s not working!!! It’s NOT working. So I wonder if he has a yeast or bacterial infection there.
In tears of absolute frustrated anger I asked for a list of his medications. His sweet nurse went to the computer and showed me the whole list. I was absolutely blown away with all of the drugs they are still giving him. He is on several blood pressure meds. He is on one for tachycardia (fast heart rate). The one thing that just fried me though was that he was being given THREE laxatives!!!! FREAKING THREE!!! He has been pooping like a river, his butt is raw and hurting, and they just blindly give him THREE laxatives. I wanted to punch someone!!! I wanted to punch me for not asking these questions sooner. His nurse and I came up with a plan concerning the laxatives. We also came up with a plan for the pain meds. I told her I wanted to be talked to about any new medication. I also said I wanted him to have an anti-nausea given before all of the meds and jiggling him around. She explained that they generally don’t medicate for the side effects of drugs – meaning, they don’t give anti-nausea because a drug causes nausea. I know that isn’t true because I am given anti-nausea meds when I have anesthesia because it makes me so sick! Again, our nurse went to bat for us and she said she wrote up a plan that asked that Jo get the anti-nausea before his other meds.
Jo didn’t get to go outside again today! I know he loved being able to do that on Monday, but he can’t until we feel it is safe that he won’t throw up and aspirate. I’m sad for him.
The speech therapists came by the room again this afternoon. Tom and I were there talking to Jo. Jo was trying to tell us he wanted a drink of water. The nurse asked the therapist if she would help him with a drink of water, (because that’s her job and specialty). She stated that she would, only, if Jo worked for it and let her put in the piece of his trach that allows him to speak and he tried to say words. This is a lot of work for Jo. We asked Jo if that was okay since it had been a terrible day for him and he was sooooo dang tired and felt sick!! Jo clearly said, “NO” to the trying to talk, but he wanted a drink. The therapist said she wouldn’t help him then. Jonah was hearing all of this. Even though I was talking softly to this woman to not fluster Jo, she was still being a LOUD talker and was being very exuberant about wanting Jo to work for his drink. She hadn’t gotten the clue that it was a very stressful situation for Tom and I, and that we were in a place of trying to soothe Jo and comfort him because he was clearly not doing well. I don’t think it even occurred to her that there was more going on because she was so caught up in herself and her job. This is when TomLOST it!!!! Among other things, he told her we didn’t want her anymore and to send a new speech therapist and then she stomped off down the hall. I then asked our nurse about just giving him water from the mouth sponges dipped in cold water. Our poor nurse was having to witness the whole ugly encounter with the therapist and then very calmly explained that she would feel terrible if Jonah aspirated on sucking fluid from the sponges, because she had been witness to that in the past. I guess I just don’t understand why I have watched the nurses do that in the past and they have given the mouth sponges to me to do it with Jo and now it is not okay. She stated that there was some kind of product that she would put in his mouth to moisten it, but that was all she could do. Jo opened his mouth to let her rub the gel all inside his mouth and then moved his tongue all around his mouth, as directed, to spread the gel more effectively. My heart was just breaking for Jo. I am just plain pooped!!! This is a roller coaster ride from HELL!!! I am so so so sorry to all of The Brilliants, but I can’t take it anymore.
May 19, 2016 A DAY OF MIRACLES AND FIRSTS FOR THE CAPTAIN!!!
Tom has been my buddy for the last two days. I have been so thankful!!! His heart is clearly divided between all of his responsibilities: making a living and meeting those obligations, his duties as a bishop, our children at home and Jonah. We have both felt so concerned and overwhelmed with Jonah’s condition that he has stayed by our sides.
This morning we were there for Jonah’s physical therapy. I was nervous to see if our plan for the medications was going to work for him or would he become sick with movement. Jo worked his buns off. He tried so hard to hold his head and his body up as the therapists set him on the edge of the bed. He tried to hold his body up with his own arms for longer moments today. Just when it looked like he was doing so well, he was hit with a coughing fit, which throws his body around. His legs begin to shake so badly that they are bouncing off the floor and he can’t hold them still. It takes quite a bit to calm him again. He only lasted for about 10 min. today. We laid him back down, and following our new plan, we left his room so he could get quality sleep and rest for the next go round of therapy. We tucked him in and went to lunch.
As I was sitting at lunch the thought came to me that I needed to ground myself by taking in the beautiful weather, the calm atmosphere, the warmth (I am constantly freezing in the hospital), and being alone with Tom. I needed to just FEEL the peace I was being given in that moment! It is incredible to me how a genuine good and wonderful moment is defined so different now. I was so thankful for the break and knew that the peace and beauty I was experiencing was a gift from my Father in Heaven. He was giving me rest, “peace beyond all understanding”. He’s got this right now! My phone rang, it was Jonah’s CNA. She was letting me know that Jonah had signaled that he wanted to go outside and they were just about ready to roll him out. I was so excited for him!! We raced over to spend time with him by the beautiful fountain and garden. Some of the boys from the rugby team showed up too and were able to talk with Jo. It was awesome!!! Jonah signaled to go back inside and again we knew he would need to sleep. Tom left for work and I went home to catch up on housework.
After dinner, with the little girls, we went to the hospital. Jo seemed to be in distress again. While Tom sat at his side, the girls and I went into the hall to pray. It was a simple prayer of asking for grace for Jo, that he would be able to be made comfortable and that we would see that he was okay and that we would be given the ability to better communicate with Jo. MIRACLES FOLLOWED OUR PRAYER IMMEDIATELY!! Within just a moment we heard Tom joking around with Jo. I walked back in the room to see a BIG smile on Jonah’s face!!!!!! He hasn’t been able to smile. He was mouthing words. He was able to use his hands and fingers to point to specific places on his body that were bothering him. He was arm-wrestling with Tom and had lots of strength and even brought his other hand over to use both arms to take Tom’s arm down. Up until then he hadn’t been able to get his hands and arms where he wanted them to go, despite being able to move them minimally. I told him that if he could wrestle with dad, he could hug his mom. I bent over the bed and laid my head on his chest. He brought his arms around me and even rubbed my arm. Then he hugged Brooklyn, Holland and Heather Saige. He showed emotion with tears. We kneelt beside his bed, held his hands and had family prayer with him and then Tom and Jonah’s nurse (Another great guy) gave him another blessing. As we were planning to leave Jo showed sadness and said he wanted Tom to come back and stay the night with him. HE WAS COMMUNICATING IN A WAY WE COULD BETTER UNDERSTAND!!!! IT CAME THAT QUICKLY!!!!! I am so thankful! The gift is so great that I feel inept in my ability give thanks equal to the magnitude of the answered prayer. I am so thankful for the reprieve! In the blink of an eye, everything can change. It is so amazing to me that if I will just hang on with integrity of faith, I am given joy, which is greater than my sorrow!! I love my Boy!! #JustWakeUpJonah