Charlotte had a rough morning with Jude again yesterday, but finally in the afternoon he began to become his old self. I am very thankful because I was beginning to research other issues and we all know the Internet can be your enemy. Jude had started Artane which is a medication for his tone about two weeks ago. I was beginning to think this might be the issue: http://www.ninds.nih.gov/disorders/neuroleptic_syndrome/neuroleptic_syndrome.htm . Jude was fitting most every symptom. So I was very happy to see his smiley face when I got home last night. The only lasting issue we seem to have that is a common occurrence is extremely cold feet with bluish toenails. However, I have been reading this is common in CP patients so I will mention it to the doctor.
So this week has been full of debates from various people on my facebook and in life in general. One debate was been with a friend who is so nice that she has basically been railroaded in a divorce. A man who never once tended to his children before will now be awarded a 7/7 split because she wanted to believe the best in him. As I shook my head and wanted something different for her and her children I realized it's just not my choice. I also realized that being to "nice" is a quality I once possessed before the world took hold of me. Being nice is something we should all strive for. Yes, it can cause you to get ran over in life, but well.........there is a defined line between good and evil. I for one believe in the end good will always win no matter how long it takes.
Another debate has been of the equality of marriage issue. I am one that believes everyone should have the same rights. Would civil unions provide the same "rights" as a marriage does......yes, but the republican state of Texas will never allow the civil unions. As we were watching Lincoln last night they showed a scene in the Senate were a man bent down and said "Would you vote for something that goes directly against God?". These people believed God didn't want blacks to be equal. My husband looked over at me and said "reminds me of the Gay marriage topic today". It amazes me that he is so in touch with sensitive topics. No I am not comparing the topic of gay marriage to slavery, but I am comparing it to equality. I am showing a pattern that any times people don't agree with equality ie blacks voting, women voting, etc then they say it goes against God. I live by his rule that thou shalt not judge. It's just my personal preference, but it seems to me a whole lot of people are very judgemental these days. I haven't gotten into the debates on facebook and I don't plan to start on here. I was just expressing my opinion so no need to reply on the issue.
I guess sometimes I get over loaded with everyone's opinions on what they think is right. Sometimes it's just to much negativity. Gay marriage, non marriage, giving birth, hospitals, c sections, politics, non politics, voting, non voting, vegan, non vegan, pet lover, non pet lover. Just let everyone be themselves and think how they want. If they aren't committing crimes then it's within their rights.
Charlotte said Jude stayed about the same today. His fever didn't come back, but she had given him Motrin early in the day. About 6:15 she gave him Valium (diazepam) due to Jude being so uncomfortable. He slept until 9pm.
He woke up with a few coughs and like he wasn't sure what was going on. I noticed he felt very cold.......when I took his temp it was only 93.4 aux. I checked his toenails and they looked pretty blue. I would chalk this up to being cold, but he was under a blanket. So my next question is wondering if the medication could cause this issue.
I took him into his bedroom and changed his clothes, diaper, etc. This got his temp up to 96.4 which I could deal with. His pulse was 134 and his ox level was up to 98. He still cracked a few smiles for me so I am still hoping he is on the mend.
He isn't sleeping with me tonight like he did last night so I am sure I will be in there about every hour to check on him.
I am not sure what else would cause an issue with Jude not regulating his body temp, but it is a bit strange.
I thought I would give you a glimpse into the way my brain works when Jude is ill.
Wednesday Charlotte had to give Jude some Valium because he was so rigid and cranky. So I began to wonder if he was starting to get under the weather.
Saturday night Jude started running a fever and wanted me to hold him constantly. I informed our weekend nurse on Sunday morning that Jude was running a fever over night and we had gotten very little sleep. As I staggered back to bed and covered myself with my blankets the nurse came to my door in a panic.
Nurse: Jude's heart rate is at 219!!! Me: Ok well let's evaluate this Nurse: I just... I mean I know I need to call when it's that high (he was very worried) Me: This happens with Jude
So I start looking at the machine running things through my head.........pulse ox: 96, heart rate: (now at) 186. Fever: Axillary 102.2 (so 103.2). Cheeks are flushed and skin is dry/flaky, urine is dark. I immediately start rationalizing things in my head. I know you can't always trust the pulse/ox machine...especially with a seizure patient...but it's probably pretty accurate. So then I start wondering if the dark urine and chapped lips are due to dehydration from the fever or if we are dealing with a kidney issue. I noticed that his nasal area is swollen near his eyes and he winced when I touched his ear.....hmm possible sinus/ear infection? I took out a stethoscope and listened to his lungs.........hmmmmm clear up top for sure.........bottom lobes sound a little diminished........could be respiratory. I ask the nurse to draw up some Motrin. I feel if we get his fever down his vitals will stabilize better. I also asked him not to administer the abuterol because it wouldn't be a good combination with a high heart rate. I explain again that Jude does this sometimes and we have learned not to panic right away. Poor nurse.....he isn't used to this with Jude. Charlotte is a pro but she deals with Jude being ill about every 3 months.
So we give him the Motrin and I woke Mike up and sent him to the store for pedialyte. I turn Jude to the left side and then turn off the lights. I am patting him and his pulse ox goes up to 98 and his heart rate starts coming down. When Mike got home I put 3 ounces of pedialyte in his IV and Allen poured in his food, etc. I let the nurse know that Jude needs to sleep. The sweet concerned nurse said when Jude wakes up he would give him his breathing treatment if his heart rate is down and I agreed.
I went to lay back down for a little while. I knew Jude needed to go in but I also knew this probably didn't warrant a trip to the ER and Cook's Children's clinic in Southlake probably didn't open until 10am since it was a Sunday. I also figured Jude needed the rest and we needed to get everything stabilized on him before we stressed him out moving him. So about noon we took him to the clinic. The doctor drew blood and did a chest X ray. My poor boy is going to wind up glowing from his every 3 month chest X ray. She said the blood looked like he had a viral infection, but that she thought he might have a sinus infection too. So she did prescribe him an antibiotic and instructed us that if he wasn't feeling better in a few days to take him back in. I knew she was giving us her best guess..........but isn't that what we all do with Jude? So I am hoping that the antibiotic will cure whatever his ailment is.
So we went home and last night Jude would NOT let me put him down for any reason. If I laid him down to go to the bathroom by the time I got back he was in a full on raging fit. He was just miserable. So finally about 10pm we administered the Valium and I took Jude to my bed. I asked Mike to sleep on the couch so I could be next to Jude to assure him he was okay.......that as a good decision. Jude woke up several times throughout the night, but I would lay my hand on him and he would go back to sleep. About 3am he woke up with over 104 degree fever so I gave him more Motrin to bring it back down. He slept pretty soundly then until 5-6am and he woke up crying. I soothed him back to sleep until about 7:30. Then he got up seizing and throwing up, but then he mustered a little grin. The grin made me feel like he is doing okay just having a hard time. So we will watch him for the next few days. We have learned not to panic just evaluate the situation and take it a step at a time.
To be honest one of the reasons I haven't agreed to Mike's want of another child is because I am afraid something will go wrong. I know that sounds sad.........afraid that something will go wrong. I wasn't just afraid the pregnancy would go wrong, but that something would happen in the future and I wasn't sure if I could handle it. I never thought I would be one to live in fear....but I am. I was afraid of finally.......letting go and being very afraid.
So today when I got a call from a friend that her young niece was very ill my heart dropped. I felt that fear again. My friend had been updating me since her sister rushed her daughter to the hospital a few days ago. I suggested a few possible ailments, but never expected the one she came back with. She told me her niece possibly had west Nile encephalitis. Which basically means her brain was very swollen due to the virus. On top of that she had suffered a stroke..........damn strokes. So as usual when medicine is concerned.... it's a wait and see situation. However, I kept telling my friend that children are RESILIENT. Her niece was healthy prior to the onset of the infection and they caught this early so this gives her great odds. I also told her to be positive. One thing I insist on with Jude is that people are positive around him. I think kids can pick up on that.......they hear more than you think they can. My friend is always full of sunshine and positive thoughts so I know she will spread good thoughts.
So I stepped back and wondered if it's ever actually valid that we live in fear. Jude's situation well "it is what it is". We give him the best possible care with the hopes that he will be with us for a very long time. We love him with all our heart knowing he gives us the same in return. However, when you have a overall healthy child that is suddenly facing a struggle for life.......do you still allow fear in? No you don't. I remembered that you put on your boots, you dig in deep, and you accept nothing but a positive outcome!
So with that here is another thought. Life can change in a mere second. So let your worries go and just hug your kiddo's or family. Also, if you are a father and cannot take the time to care for your kids in an emergency situation you need to revaluate your life.......but I guess that's my own personal opinion.
Every now and then I just need to have a good meltdown...I feel much better now. I looked around and realized I have a really good life. Jude's situation can be challenging, but he is so worth it. Plus, we are very lucky that he doesn't require a trach or many other things he could possibly have. I have a GREAT job, Mike is working, Emily is thriving, and we are well. We are living very comfortably. Mike and I even have the luxury of meeting once or twice a week for lunch. It's our "us" time and our lunch meetings keep a closeness in our relationship.
So why the change of heart? Who knows. However it could be that I actually got some sleep last night! Jude was still awake due to the new Artane regiment, but the cat..........the cat was introduced to the new storm door! He didn't like it and couldn't scratch it. Mike's dog Spot didn't like it much either. I LOVE to walk during warm weather and generally walk 3 miles within 20 minutes on a spring/summer night. So I take our naughty, but cute Jack Rusell terrier Spot on my lenghty trek. Well I was getting his leash and he spied the new storm door. Right when Mike yelled "He is going to...................". Houdini (AKA Spot) tried to escape and ran smack dab into the storm door at full speed. All we heard was BANG and then ARRRRRRRRRRR and then .......... the terrorist hit the ground. I felt so bad for him, but I have to admit.........we were also laughing. Spot shook it off and came over wagging his tail to go for a walk. I walked him towards the storm door and he whimpered and let out a low growl. Once out the door he was dragging me behind the leash as usual. I am pretty convinced he will never try to escape again. The crazy thing is I think the animals have kept me up just as much as Jude. I could have had another newborn vs all these crazy animals. lol!
So Emily is wanting to try out for her upcoming high schools drill team. She is attending a drill camp to prepare her for her try outs. She started the camp today and text me from her class that she was in over her head. We all know that Emily is an amazing child, but she does have a tendency to try to back out of things when they get difficult. So I stuck to my guns and I assured her she can do this. She has to learn a full 1.30 minute dance routine with kicks, jumps, lunges, and full ballet moves within ohhhhhh 24 hours. If you saw the recorded routine you would say "no way". However Emily has vast experience doing this because of her dance/pageant upbringing. She is upstairs as I type rehearsing. I think it's good for her to remember that not everything comes easy and that most things require dedicated hard work. Tonight she asked me to research what it takes to become an infectious disease specialist. Once we researched the entire outline she said "that looks hard... do you think I can do it". I said "OF COURSE! but you need to follow in your cousin Jesse's footsteps. If this is what you truly want and dream of then you need to put boys and distractions aside and concentrate on it. It will mean lots of sacrifice and dedication". She sighed and laughed and said "Mom it's like 10 years of school". I said "Well Em you will be 18 when you graduate right?". She said "yes". I replied "Well you will be 28 at some point anyway so why not be 28 with a doctrate?". She said "good point mom".
I am a bit better. I got some sleep last night which is good. However, after we gave Jude his new medication last night about twenty minutes later he threw up. It's hard to know if it was due to the medication or if it was due to phlem.
Not much to update today, but wanted to assure everyone I have not jumped off the cliff. lol!
First let me state that I am REALLY irritated that mother nature didn't get the groundhogs note that Winter was suppose to end EARLY! I walked out the door this past Sunday with flip flops and a T shirt on...only to run back in and throw on a pair of boots and a sweat shirt. I was very irritated! I am so ready for warm weather that I could do a dorky Geico ad for it if it would insure the fact that the warm weather would arrive ASAP!
Second this may seem like one gripy blog.........I am tired again. I just am. I need a vacation. Then I feel guilty for saying I need a vacation because so many people don't have the means to take one but I am just TIRED. Sunday night Jude didn't sleep well at all so I drug myself to work (still sick) and propped my eyes open with toothpicks. So last night we introduced a new tone medication for Jude called Artane. Sweet little Jude was just laying there "dinked" out (as I would say) with his eyes open. He just could not fall asleep. So it was another rattled night.
Then I have dealt with a new case manager for Jude's medically dependent children's program and she is a handful. I loved his last case manager! She was so understanding and really worked with our situation, but this one seems to care two craps about the fact I work full time. Plus I have multiple agencies calling regarding various aspects of Jude's life and they all seem to need me to take a day off work. It's life. It's what I have to do, but ..........I am maxed out.
I tried to tell my family yesterday that I need to relax but they thought I was crazy. I don't know why I feel so overwhelmed lately ... I just do. It's to the point that if anyone even suggested I take something else on I just say "No" before they even start. So I have decided to try to de-stress some. I am just sending out Smile Boxes when requested not setting up any new parties right now. Then I am taking in the entries to Regal Princess, but not traveling for it right now. I don't have it in me to do much more. Em has a lot going on too and I know that has something to do with it. It's not her fault. She is a teen and just naturally has a lot going on.
I took a walk last night and when I got back Mike made dinner. I think he knew that even though we were joking and laughing I truly am a bit maxed out. It will get better........it always does. However, I am looking at taking a few days to get out of town and just relax. However, I am not sure it would be relaxing with all Jude's equipment, etc...but we can try!
Maybe I can win the lottery and then not worry and work so hard anymore.............lol! One can hope :)
I am blessed and grateful for my life just a little frazzled.
Well little mister Jude had an auxiliary temp this morning of 101.1 so add a degree and we have 102.1. As a special needs parent you quickly learn to NOT panic on any high fever even 105+. It's the body doing it's job and you learn to control it. However, this means Jude is battling something............again. So is it viral or bacterial? His pulse ox was at 92, respiratory 48 and heart rate was in the 160's when I left for work. Charlotte spent about an hour giving him his breathing treatments, bathing him, giving him Motrin etc. This brought his temp down to 97 aux, resp rate to 40 (still high) and heart rate to 130 (still high but tolerable). She also indicated she saw a seizure that was different than his normal ones. She said he was sitting in his wheelchair and he seems to lose oxygen, but his seizures only last 40 seconds so he was okay. The good thing is Jude is in good spirits and smiling which means if he is ill it's not that bad yet and hopefully won't be.
So we will continue to watch Jude to see if this is anything that warrants a trip in or not. His neurologist got his lab results back and they are good. However, he wants to see him since his tone has been off and seizures look different. His pulmo wants us to take him in if this situation gets worse and his school still wants a meeting about home bound school. Emily needs to go to the dentist Friday and she also needs to see a dermatologist so I need about 3 of me!
I am well but the allergies in TX are terrible today!!! I am sneezing my head off. Well I will update on Jude.
Last night while sleeping I heard a very odd noise that woke me up. It sounded like a mouse squeaking, but it was coming through the baby monitor we have set up to hear Jude. When I got to his room his breathing was very shallow and he just had a little squeak with each breath. I hooked up his pulse ox and it was at 86 and heart rate was 143. I rubbed on his chest and did some CPT to try to loosen any mechanical obstruction (Phlegm) that might be causing the issue. Mike suggested that I give Jude some Benadryl so I filled a syringe up and administered it through his button. After I felt he was comfortable in bed I went to lay back down, but I never could sleep right. I kept listening for Jude's breathing. If I heard him it kept me awake and if I didn't hear him I panicked.
In the morning Jude's pulse ox was much better. After his neb treatments Charlotte said it stayed around 97-100. She said he is in good spirits, but doesn't seem 100% himself. So we are keeping an eye on him.
Emily is doing well. She has all her high school courses picked out and is trying out for the drill team next month. She is also still getting ready for her Miss Dallas teen pageant. If you haven't liked her page please visit she would appreciate it.
The best way to find yourself is to lose yourself in the service of others - Ghandi
Isn't that the truth. Over the past few years I feel like I have been on an expedition to find myself. I have struggled with sorrow and grief due to our situation. Then I would find myself and be satisfied again. However, I never felt the peace and calm I do today. Maybe that is the "wise" that comes with turning 40.
Through Emily's charity and through her other endeavors I have found an outlet for my healing. Through watching others and their daily lives I found found an appreciation for my own life. Now I understand that things aren't easy and never will be, but I appreciate the struggle life brings and the accomplished feeling of riding the storm.
I can look at Jude while he sits on my lap and honestly say without a doubt he is the biggest blessing ever! He has taught me patience, compassion, and that there always is a silver lining. Emily has taught me that raising a teenager IS like nailing jello to the wall, but that they can teach you as much as you can teach them.
Most of all I have learned what I always preach. Everyone has a story.........it's what you do with your story that matters! Fate lays out the choice of paths you can take and it's up to you to choose the right one. You can spend your life blaming your past or you can move forward and embrace the future. It's up to you!
I am okay with growing older. At least I am alive, happy, and still capable of learning so much more.
