Tuesday, April 6, 2010

Has It Only Been a Day?

So I am back in Yuma and Jeremy is still at the Mayo Clinic. It feels so strange, I was a huge baby yesterday on the way home. Once Skyler fell asleep, I just couldn't stop crying. I don't know if it was the fact that I hadn't slept much all week or what but I was just so sad to come home. I was super excited to see Kenzie again, but the thought of taking the kids and going home to a house without Jeremy there was rough. It has seriously been 3 months since I have been in that house without Jeremy there all the time. I know it has been hard on him being pretty much confined to the house, and I hate that he had to be, but we have sure been able to spend a lot of time together these few months, lots of long talks, lots of long nights, but it was time we were able to spend together. When we got home Skyler asked if he could sleep in dad's spot on the bed, I told him yes, then he wanted to look at photo albums to find old pictures of him and his dad, it was sweet. I hope we can soon fill more photo albums with pictures of camp outs, fishing trips, hikes, and fun family times. Anyways, enough of that talk, it feels like I haven't seen Jeremy in a week. He is having an OK day, his sister Sarah went and sat with him for a couple hours today at the hospital, he said that it was nice getting to visit with her. I talked to him at about 10:30 this evening and he was hurting pretty bad, I don't know if it is his body having withdrawals from the medication or if he is going to have a rough night with the seizures. We are still both in shock that he has only had 3 seizures this week, that is just crazy, that is typically what he would have on a good day. So let me fill you in on our new trial. Kenzie's hearing aid has not been working well for her lately, I was able to borrow a loaner from the Cooperative that I work for, but we tried it on her today, and she still says she can't hear. The thought of her needing a 2nd implant is terrifying for me, but also I feel such a sense of urgency to get the process started before that ear forgets how to hear and function as well as it did. She has trouble hearing, especially in noise, with only her implant processor on. It is heartbreaking to think we may be starting this whole process again. She was nervous at first that she may possibly need another CI, but when I told her we would not have to worry about being able to ride roller coasters anymore, she was jumping all over the place and saying "whoo hoo!" She has wanted to ride roller coasters for the past couple years, but since learning she had Enlarged Vestibular Aqueducts, that has been out of the question, those changes in altitude can wipe the remaining hearing away for good. Another thing that can make her lose that hearing is if she bumps her head, she and Skyler were playing/fighting with sticks while I was up at Mayo and she ended up getting a pretty good whack to the head, at the time I was just worried and sad for her because it was bleeding and she was so sad, but later as I put two and two together, I realized that hit may have been what took the remaining hearing away. I know many may say, well she is deaf anyway, but she had some really good usable residual hearing in that ear and did very nicely with her hearing aid. I am still praying and holding out hope that it will come back, but I am also trying to be realistic and prepare myself for the next step if it doesn't. I am rambling on and on and on again. I don't know if I will get a chance to post for a couple days, I have a busy day tomorrow with work and meetings, and then Skyler and I are headed back up to Phoenix to get the growth under his eye removed, they have to put him under for it because it is so close to his eye. When his procedure is finished, my mom will bring him back to Yuma and I will stay with Jeremy, hopefully he will be released by this weekend. I am just so scared that they will not have any definite answers. I am so blessed because my bosses have told me I can work on several IEPs while I am gone so I don't have to go without being paid, that is such a blessing right now, not to mention the fact that I have those to do as well as all my college work has been really stressing me out, so if I can get a good portion of those finished, that will alleviate a bit of stress. OK well I am going to try to get some sleep.

Monday, April 5, 2010

Our Special Easter Visitor


Yesterday Jeremy was not feeling too hot, he has been having some withdrawals from all his seizure meds. Hopefully in another day or so his blood levels will show that the Dilantin is out of his system completely. We are still trying to figure out what is going on, there are several different possibilities, hopefully we can get all the data we need so we can go home. So at about 4:00pm Skyler rode up to Phoenix with a couple of super nice kids driving back up for college. Uncle Tim picked him up and brought him over to to us at the hospital at about 9pm. It was so great seeing him, we couldn't quit hugging him, it really made our night to be able to see at least one of our kiddos on Easter. Kenzie is still in Yuma at Grandma Devey's house; she is keeping Grandma on her toes. She was excited last night because Grandma painted her nails with shiny purple polish. After Skyler asked his dad lots of questions and got the video monitor guy to say hi to him when he waved to the camera, we left the hospital and headed to Buckeye where he was going to stay the night with Aunt Jeanie.While at Jeanie's, I took a bath which was so nice. The shower here has no water pressure and the door doesn't lock, so it is always a super fast nerve wracking experience. Oh, Jeremy had a sponge bath yesterday, that was quite the experience. I gave it to him, but we were both laughing as we were struggling to keep him nicely covered up with his blanket, so uncomfortable with that camera peering down. Needless to say we managed to get him cleaned up without even once giving the camera a show. I am sure the person watching the screen thought we were crazy, I don't even want to know the many things those techs have seen in their profession. Anyways after much maneuvering he was clean and felt much better and remained modest during the whole ordeal. Oh and I have to give nurses a lot of credit they do those things all the time. Anyways, I know I say this on a daily basis, but holy cow we have amazing family! We could never have gotten through without all the support from you guys these past few months. We love you all so much. I am getting ready to meet Skyler at Phoenix Children's hospital to hopefully get the growth under his eye removed, then I am taking him back to Yuma. I will be back here on Tuesday, my mom is going to come and stay with him part of the time while I am gone. Hope we can get all the answers we need before heading back home. The doctor thinks it will still be a few more days because he wants his blood to be free of his medicine. Obviously the meds were not helping, he has had less seizures here than at any time in the past 3 months.

Sunday, April 4, 2010

Happy Easter

So I didn't post about yesterday, I got busy working on an IEP for one of my students and a couple homework assignments. Yesterday was rough for Jeremy. He is having some stomach issues, the doctors say it could be from taking away his medication or from the special meds that they used to stop his seizures the other night. his oxygen has been horrible. The alarm goes off constantly because he is not getting enough oxygen in his blood. So he has the oxygen tube under his nose now most of the time. Tim Jeanie, Joe, and my mom all came and visited yesterday. The kids are both in Yuma now at grandmas and I am sure they are driving her crazy. Yesterday Kenzie got hit in the head with a stick and Priscilla said it was a little traumatic, she kept saying that she wished it was all just a nightmare. I guess it bled a lot as head wounds usually do, but she was OK. It is so hard having our family separated. I know the kids are in good hands, but it is hard on them too. They were happy to wake up to the goodies the "Easter Bunny" left for them. So I want to say a huge THANK YOU to the Bunny for taking care of our kids when we could not. The Dr. came in yesterday and said our stay here is going to need to be extended several days because those huge seizures he had the other night produced no EEGs. We were shocked, but the doctor said that does happen in patients whose problems are located deep in the frontal lobe of the brain. Now we are doing yet more testing, waiting for his seizure meds to be completely out of his system. It is funny, it seems like he is doing a little better with his meds being reduced so much. I told our old doctor in San Diego all the time that he was getting worse and worse on the med. he changed him too. Our doctor here is not sure his seizures are epilepsy at all, but he is doing his best to figure it out. We are definitely in good hands here. I don't even want to think what this hospital stay will cost. There is someone watching his every move Jeremy makes. He is on video every second of every day. I will tell you some common phrases we hear on the intercom through out our day.
"Jeremy don't touch your head please."
"Jeremy don't bite your finger nails."
"Jeremy you need to lower your book so we can see your whole face."
"Jeremy lift your head when you change positions so you don't rub the electrodes."
"Are you doing OK Jeremy?"
"Jeremy you can't lay face down, we need to see your face."
"Alison, remember you may not sit on the bed."
"Can you please open the bathroom door a little more."
They are super nice about it all, but they don't miss a thing!
Anyways, I am trying to decide what I will do now. I have two conflicting voices in my head right now. Kenzie is having issues with her hearing equipment right now, so I need to go back to Yuma and get her taken care of. My mom says she will come stay with Jeremy. I also need to be working again. My spring break is officially over. I know I will not function very well in Yuma with him being here so far away. Skyler is getting a ride up to Phoenix tonight because he has an appointment at Phoenix Children's Hospital tomorrow, I might take him back to Yuma afterwards, get things set up for my students,try to get a loaner hearing aid for Makenzie, and then work Tuesday and come back up after work. We shall see. Now back to Easter, I am sad I don't have pictures to post of my kiddos excitedly ransacking their Easter baskets, I am sure grandma took a lot of pictures for me. I am glad my kids understand that the eggs, candy, it is all just the icing on the cake. The real reason for this special day is our older brother Jesus Christ, that he came down to earth, he showed us the example of how we should live our lives. He loved each and everyone of us so much that he gave his life for us so we could also have the opportunity of rising again after this life and being able to return to live with him and our Father in Heaven. I am so grateful to know that this life doesn't end with death, that because our Savior died for us we have the opportunity, if we live our lives as we should, to be with our families forever in Heaven forever. I hope you all have a wonderful Easter, and take time to reflect on what it is really all about.

Saturday, April 3, 2010

What a Night


Jeremy settled back down for the night, diggin the new meds!


Mom. Nicky and I, Jeremy had the camera at an angle in the bed, so this pict is hillarious! It looks like mom's the tallest and I am the shortest, very strange...


My crazy buff sister! She is running marathons now, can you tell I am proud of her?

Jack, baby Chloee, and my little MaKenzie girl. She had so much fun with her cousins!


So I am doing another middle of the night post right now. It is 2:19am and we are settling back down for the night. I will give the highlights from day 4. Today I had to leave the hospital for a few hours to go pick up MaKenzie from Aunt Brigette's, she was such a good girl while she was there. She woke up, dressed herself, brushed her teeth, put her toupee tape and implant on by herself every morning. At night she would take it all off, put her batteries on the charger and read her chapter book until she fell asleep. Oh, one funny thing, she is reading Junie B. Jones books lately. The other day in the car on our way here, she says, "Mom, Junie B. Jones has very bad grammar." It cracked me up, I was hesitant to let her read Junie B. books for that very reason, since we busted our butts for four over five years helping her learn how to talk and use good grammar. Anyways, so Kenz had fun. Her little cousin Jack told his mom he was going to throw a toy at me because I came to take Kenzie away today, it was pretty funny. After picking up Kenz we went and got her some lunch, then I drove to ASU to drop her off with her Aunt Melissa who was driving back to Yuma today. On the way over we were talking about various aspects of college, dorm life, etc. So while we were waiting for Aunt Melissa to come get her from the parking lot, she said, "So since I am going to hang out with Melissa for a couple hours mom, does that mean it is kinda like I am in college now?" Another laughing moment, but also a little scary, I don't know if my over-tiredness and built up emotions got the best of me or what, but after driving away and leaving there behind, I bawled like a baby, I just kept thinking that one day I really will be dropping her off and driving away when she starts college. It was so nice getting a couple hours with her before going back to the hospital, but I was ready to be back with Jeremy, I was so worried about him while I was gone. He did fine though, he slept the whole time. Later in the afternoon my mom and sister Nicky came for a little visit, it was nice seeing them. After they left Jeremy and I watched "Mall Cop." The sleep study doctors came in to start him on another machine for his sleep study since he rarely gets enough oxygen when he sleeps. I finally drifted off to sleep around midnight. I knew I needed to get some because Jeremy was experiencing the Aura and we knew it might be a long night. So about 12:45 I heard the awful sound he makes when he starts having a seizure and as I jumped up the alarms were already going crazy in this wing of the hospital, he was having a very bad seizure. Last night he had a mild seizure, but this one was the kind we are used to at home. All I can say is that whole locking him in bed with the belt kept him from going over the guard rails of the bed. I had to jump back as the team of nurses and technicians gathered around his bed, trying to restrain him from hurting himself, one was trying to suction him during it. After it ended they did his blood pressure, asked a million questions, had him read a sentence, do a simple math calculation, and several other things. Most of which he couldn't do for a while until his brain stopped throbbing and he was able to focus. His blood pressure was 200/100, right after the seizure. I may have mixed the top and bottom number up, but he it is headed for 3 am, there will be a million typos in this post. So once they got their information, they covered him up and left the room. He told me he was feeling the aura again and was pretty sure another one would come before too long. He had barely said that when everything started tightening up and then BOOM, he was having another Gran Mal seizure, the alarm went off, it is so loud, it goes off on the whole floor so that all available nurses can run straight to the flashing room. They came in and did the same things as before, he was definitely unable to answer most of the questions after the seizure ended, but he could read and tell them where he was at. The nurses said he needed the medicine Adavan (I know I spelled that wrong) because he had just had two very severe seizures in a row, and that his body and brain couldn't take anymore tonight. I was so happy to hear they would give him med. to stop his seizures, usually at home he will have 5 or so in a row and it really messes him up for a while. SO when the doctors went to put the medicine in his IV they saw how bad his IV was, it was swollen, covered in blood, so they had to stick him a couple more times to get him another IV, then they were able to give him his medicine. I was a little embarrassed because when they went to take out the bad IV I held his hand and watched them clean and clean and clean it. Before they had finished all the way I had to go sit down and do some breathing to keep from passing out, or throwing up. I can't believe I got like that, that was a first for me, that arm looked really bad though, I guess when he was seizing so hard it just foced that tube and blood out and made his arm get all swollen. Anyways, just talking about it makes me feel nausious again. Now he is comfortably watching TV and all is well for tonight, so I am going to log off and try and get some sleep. Thanks for the prayers and support.

Friday, April 2, 2010

Urrgghhhh the Beeping is Driving Me Insane!

Ahhhh, so I should definitely be asleep right now, but it is impossible for me right now. Jeremy and I stayed up till after 1:00 am, per the Dr.s orders. He did not have another seizure last night, but he sure didn't feel too well. Then before we went to sleep they hooked him up to a monitor to do a sleep study on him. Since about 1:30, this machine has been going off every 2 minutes or so, it isn't just a small beeping sound, it is like the beep of a alarm clock, and it last for 20 or more seconds most times it goes off, Jeremy is lucky that he can sleep through anything. I finally got up like 5 minutes ago and asked them if an electrode was off or something and they said that is the sound it makes when a patients heart rate goes down too low and they need oxygen. I was like, wow, OK, so does he need to get oxygen and they said technically yes, but since we are doing a sleep study we just have to monitor and record these numbers all night for the Dr. to see tomorrow, so I will be interested to hear what the Dr. says. I have been watching the numbers on the machine now and basically his heart rate goes down to about 76-78 bpm and then the oxygen level goes down in the 80's, then both numbers will climb back up to the 90's and a few minutes later the same thing happens. At first it was keeping me awake because it was such an annoying sound, now it is keeping me awake simply because it freaks me out. Anyways, it was the middle of the night/morning like 3:00am and I didn't want to wake up my mom to talk to her, so this was my other option, hopefully the beeping will stop soon. I sincerely hope you are all sleeping peacefully out there, in the time I have written this the beeping has probably gone off 10 separate times, I seriously don't know how Jeremy or any one in the rooms around us can sleep through this. OK, yay, after I asked a nurse about the beeping I decided to leave our door cracked, that way they could hear how deafening the beeping sound was, they just came in and switched machines and turned the beeping sound off, it will definitely still be monitoring and recording his numbers, but the beeping has stopped, yay! I don't think the nurses liked the loud constant sound from the machine either.

Thursday, April 1, 2010

Mayo-Day Three


Let's see this is going to be a quick post because Jeremy just had a seizure, we definitely are wanting more of those during our stay here so they can get as much information as possible. He is doing alright though. Our day was brightened by our sweet sister Jeanie, her husband Joe, and their son Spencer. They were so kind and brought In and Out burger to the hospital for lunch. It was fun visiting with them, we just had to keep reminding them we were on video being watched like hawks 24/7, if Jeremy even goes to scratch his head, we hear an immediate beep and the tech tells him not to touch his head at all. It was great seeing them, and enjoying a few laughs. Well I think Jeremy is about to have another, so this will be the end of tonight's post, goodnight all.