Jude did sleep last night! It was amazing...........until a large storm cell hit our area and it woke up our panicked dog. The poor dog was in our bed shaking, trembling, and crying for HOURS! I finally took my blanket bid my husband farewell and went to the living room to sleep on the couch next to Jude's futon. Jude woke up a few times but since I was so close to him I was able to quickly reposition him and he went back to sleep. I actually slept very well on the couch even though I was up several times with Jude. I think it's because I was so close to him versus running to his room when I heard him whimper in pain. So overall we all got more sleep than normal.
Jude napped from 6-7 tonight so I am hoping he sleeps overnight. I have to say that we are SO lucky to have an amazing sleep safe bed for Jude, a great futon, and two great nurses. We may not sleep all the time but we have great resources and people helping us.
Jude had a hard time tonight whenever I got home from work. He was restless, hurting, and very toned out. I gave him his 7:30 scheduled Valium and Baclofen. He was still having a hard time and was having a lot of congestion so I added some Benadryl to the medication. Soon Jude was OUT. He was just exhausted and was no longer coughing on a consistent basis so he went fast a sleep. Keep in mind we have all had days upon days without solid sleep. I looked at my husband and said, "I think Jude may sleep tonight...........we may just leave him here on the futon". I turned around and suddenly Mike grabbed me and wrapped his arms around me. It rather scared me! He said, "Omg do you think he will sleep?". LOL! Poor guy...........I was so tired that he has gotten up a lot more than he normally does this week. He is a great dad and is just worn out.
I love my little boy. It makes me so sad that the surgery we chose to make his life easier has caused so many continuous issues. I only hope that in the end that Jude realizes we elected this surgery to try to ease his pain and we did not mean to increase it. So tonight I will tuck him in on his futon and move his baby monitor to the living room. I hope he bundles up tight and sleeps so we can all regain our strength but especially him!
PS. I have been thinking a lot about my friend I lost awhile back. I want you to know I still think of you and in such a positive manner. I found some old pictures and was just giggling at the small baby chicks in our girls hands. I will always love you and always cherish our times. I hope you are well!!!
Jude is still not sleeping well..........at all! He does well during the day but at night he is up and down literally all night long. He moans, cries, grunts, and even vomits. I am not sure what is going on with him. I feel terrible because I got very frustrated this morning when I had to get up yet again to suction his vomit. I didn't tell Jude I was frustrated, but again I have to remind myself that if I am irritated he must really feel bad. I mean he is the one there in the bed throwing up I am just simply suctioning him .
I am really hoping he does okay next week on the drive to Houston.
Jude had a hard Friday night. He was literally up and down the entire night moaning, crying, and needing repositioning. We had no idea what was going on with him. Saturday night was better, but then last night he did the same thing. However it was more frequent when he was trying to go to sleep. I thought he was rebelling against going down for the night. I gave him his medications, repositioned him, and did everything I could. We even let Jude "cry it out" for a bit which broke my heart. Nothing..................NOTHING worked! Finally I walked in his room and tried to remove congestion but there wasn't any to remove so for peace I put on his oxygen meter. He was at 82......yikes. So I put 2 liters of oxygen on Jude and he settled in his pillow, got very quiet, and went to sleep. His oxygen went up to 87. So I had finally found the culprit.
Per the nurse Jude is clearing a lot of congestion today but his oxygen limits are within a normal range. Mike mentioned at lunch that he thinks Jude may be getting sick. I am not sure but Jude does have a habit of doing this prior to us going out of town. I think it may just be more of his new normal and it's a matter of having people around him that can narrow symptoms down to reach a solution.
Mike is starting to work at his friend Kevin's again for side money. This is the same place he put so many hours in before and wound up surprising me with earrings. This time he was suppose to be working towards items he needs and again came to me and said he had wanted to surprise me with a weekend trip to NYC. He wanted to take Emily and I while Emily would still really appreciate things like FAO Schwartz. It all sounded fabulous but I told him I just didn't feel comfortable being that far away from Jude and the above explanation of last night is exactly why. I know Mike and I need some time together and I am hoping we can get a night away locally very soon. Regardless he is very sweet to want to take us somewhere.
CHASA posted this article today and I think it's very well written. They deal with children that have partial paralysis. Since I deal with a child that has complete paralysis I thought I would add to this a bit. http://www.chasa.org/support-community/coping-with-holidays/
The holidays were difficult at first. Like the article states there are different levels of grieving for the child you thought you were going to have. In Jude's case we feel a responsibility to include him as much as possible in holiday traditions but there is now a realization that he isn't able to really participate. Transporting him for short periods of time on Thanksgiving became so overwhelming that we now just stay home. We have opted to follow Emily in her quest to become miss Teen during the Thanksgiving holiday. So we have a quiet dinner at home with just our family on Thursday. Then the next day we load our van to the brim and take a long trip to Houston. Jude must travel with all his medication, suction, supplies, oxygen and rescue aids. So to take him to someones house for a meal is draining and sucks the very fun out of the holiday. So we enjoy him at home while we eat our meal then head out the next day. The trip is worth it because we can position him in our hotel room with all his equipment for several days before heading home.
On Christmas my family normally comes to us which makes things so much easier. Over the years I decided to no longer stress about a perfectly clean house. My living room is laced with therapy equipment and therefore seating is limited but I don't stress about that either. I no longer worry about asking people to bring food with them because it helps with my time allotment. A plethora of food that everyone pitches in to bring provides lots of choices and makes everyone happy. I have learned to tell people ahead of time what Jude needs because they worry about his gifts and there are only certain things he uses. This year we are looking to obtain a positioning pillow for Jude and pajama's. So everyone normally pitches in and it's a wonderful system. I have worked to make Christmas Eve special and to include Jude in it. I will generally buy him Christmas pajamas and I put his little stocking out. My family comes over and we all watch "Elf" while Jude cuddles in my lap. They endure the suction machine, the vomit, and the other situations that are apart of Jude's lifestyle. No one really looks away or looks down anymore wondering what they should do. Some even get their hands dirty and help position, turn, and suction.
On Christmas morning Jude tends to have the least gifts under our tree. His stocking is more bare and sometimes it's hard to take. However I remind myself that the items Jude needs are more expensive and require more. He cannot play with the little slinky, the coloring book, or the other little items Santa places in some stockings. So we have adjusted, but it's still hard. He doesn't bound down the stairs like Emily still does to see what Santa left him. However he is here. Jude is content with being warm, being pain free, and being loved on. I guess it's an acceptance of non material possessions and endless love that we should all learn.
To touch on some other subjects the article listed. It's impossible to get the right amount of sleep when your child is up and down all night. So I have learned to freely admit "I am tired" so please accept me a little stressed out. It's a phrase my family and friends here on a consistent basis and therefore they understand my situation. Exercise is pretty non existent when you work all day and are up all night. So I embrace my fluffiness!! As for watching the food and alcohol consumption......that's probably true. However a few glasses of wine with dear friends and family makes life a little more grand in my eyes. A wonderful meal that others help cook is also pretty amazing.
Jude cannot help color pages or paint pictures but I have treasured possessions his therapists and teachers have helped create over the years. Little Christmas trees that include his fingerprints a teacher positioned on the paper accompanied by cute little poems and more. Each holiday with him is a blessing and I am grateful our family understands our situation.
Jude is proceeding along about the same way as he has been. He has good moments, bad moments, and some sleepless nights. I cherish every minute that I get little smiles from him and all his precious snuggles.
So I had an interesting Saturday night. We took Emily out to a lesson and when we got back I went to change clothes. I was looking at fixing a sign I made for Emily and went back into the kitchen. On my way around the corner my foot hit some water that has been splashed out of the dog bowl. It was a moment where you think "OH CRAP!". There I went down, crash......SPLAT! I landed on my arm and rammed my shoulder into the wall. My foot went into the other wall. I laid there for a bit in pain and taking in what just had happened. I laughed a bit and then I noticed I had really hurt my shoulder. This was the same shoulder I had injured in a car wreck and had surgery on. I then moped around the house the rest of the night and into Sunday. I am still hurting but luckily it's getting better. Just call me Grace!!!
So today I was trying to promote the insurance agency I work for and I found a review of our agency from 2011. They said the customer service at our agency was terrible and I was a tyrant that huffs and puffs when I am forced to answer the phone. At first this really hurt my feelings because I take pride in my job. I know I always pick up the phone unless I am working on something else. I may huff and puff when busy but never to customers, and I have so many long term clients that always compliment our agency. It's like everything I knew was right just came to a complete halt and it really hurt my feelings. Then I realized it really hadn't come to a halt. I know I do a good job. I may get frustrated just like any other normal human but I do my job well and I provide the best service I can. I took a deep breath and realized someone posting anonymously really doesn't matter. I also realized that 2010-2011 (when the comment was posted) wasn't the best year. Jude had just gotten his G button, Mike was still not working, and life was really really hard. So could I have been abrupt and probably should have been more patient with someone or even an employee? Yes. I probably should have. I probably still can sometimes. I am tired, over stressed, but I am a DAMN hard worker. So the next time I get frustrated with someone in a professional position I will take a step back and realize they may just have a lot going on and to look at their overall service. Next time I get frustrated on the phone I will take a deep breath and wrangle in my patience. Then provide the best service I know I can. So a few good lessons. I decided to shake this off and realize I do a really good job. I am well educated and provide the best service I can. I have to admit that I sometimes admire how my husband is so able to just blow things like this off.
We are at a bit of a standstill with Jude. Life has just taken a new shape and we will do all we can to keep him well.
When I got home yesterday Jude was sleeping. The nurse said Jude slept until 10am and then went back to sleep at 4:30. He slept until 6:30 or 7:30. I cannot remember the exact time. When he woke up he again wanted to be held. So we snuggled in and watched Maleficient, which was fabulous. After the movie I took Jude to bed and set everything up for his feed and medications. Brilliant mom spilled his seizure medication by not closing the port. The red dots went all over his sheets and I had to stop and clean them up.
Jude didn't have a good night. He would cry out several times through the night. When I would go into see him he wasn't ever full awake he was just crying with his eyes closed. So I would reposition him and then go back to bed. Once I repositioned him but he still kept crying and I couldn't figure out what was going on. I finally found that his feed had disconnected from his line (probably from being turned over) and it had flowed under him. Poor kid was drenched and probably cold. So I changed his shirt and wiped his back. Jude smiled really big and drifted off to sleep with the lights on and without his sheet changed. So I grabbed some towels and cleaned up the formula then laid dry towels down for him to lay on until the morning.
This morning from about 6:30am on he began waking up crying again. I would go in there and talk to him then pat his arm. He would quiet down and go back to sleep. I am not sure if it's the weather or anything significant but it was a tough night.
Jude is doing pretty well. I think we are just getting used to the new normal and what we have to do to help control his tone. This requires a new medication regiment, positioning, and more. Last night when I got home he wanted me to hold him and not set him down for any reason. If I sat him down he would get toned out and start sweating. If I picked him up he would smile and bat his big eyelashes.
So he was held until he went to sleep last night. He did wake up several times and at 5am vomiting, but again we are just getting used to it. He was happy this morning and I cannot wait to see him when I get home. We are going to snuggle up and watch Maleficent.
