Wednesday, October 1, 2014

Update

Mike took Jude to get his blood done this morning so now we just wait. I did do a little Yahoo reserach this morning. I discovered that bruising is a rare side effect of Clonidine which is the medication we nixed on Saturday. So I am hoping that is the situation here.

I will update more we I have information.


Tuesday, September 30, 2014

The bruises and the highway

So both of Jude's doctors I wrote contacted me after seeing the pictures and seemed fairly concerned. His neuro ordered a whole host of labs. I explained I didn't get off work today until after the lab closed. However I could take Jude to the pediatric urgent care center and I knew they had a lab there. They had done blood tests on Jude before. They acknowledged that was a good idea and sent me over a request for specific labs.

Skip to when I got home and loaded Jude in the car. It started with Jude throwing up on me prior to leaving. Once I got him cleaned up he coughed and choked the whole way to the facility.  Once there I covered his mouth with a mask so people would know he is immune deficient and that he is also sick. I know people are a little freaked out with all the viruses so I just put it out there...stay away. So the nurses get him back to triage and the doctor ended up coming in. I thought to myself, "this is new.......a doctor in triage!!"  She explained she heard Jude coughing and she looked up his history. I said "uh oh". She said that she was concerned they might not have the level of care he needed and then asked why I thought he might be anemic. I lifted his arm and she said "OH MY!". ugh that's not reassuring. I then handed her the labs the neurologist wants and she explained that their lab could not run coagulates. She said those would be very important in Jude's case. She then told me that his CBC probably hasn't changed much but that all the tests as a whole put together would be what he needs. They would all need to be reviewed. She then told me how concerned she was and that if Jude is bleeding under the skin he might be bleeding elsewhere. I promised we would either get him to the ER tonight or to a lab first thing in the am. We currently have him scheduled for an 8am lab. She knew Jude's history didn't have any issues with anemia or blood.

So I packed Jude back up and all HELL broke loose. Jude began coughing (left over from the virus), then choking, then vomiting, then I would pull over. It was an endless cycle. I used my hazard lights on the side of the highway so many times that I finally just sat there on 114 in the semi trucks glow crying my eyes out. I just lost it and screamed and screamed. Then I hugged Jude and imagined if I was frustrated how on Earth he must feel. After many frequent stops we finally made it home. Mike and Emily weren't home yet so I ran to open the door so I could carry Jude in. There in the porch light was a giant spider...of course. So I stepped on it and babies went everywhere. I chalked this up to a shitastic day and I am hoping tomorrow is much better. I am hoping these labs just say it's a fluke or a deficiency.




Ps. I will say that since taking Jude off his Clonidine he hasn't had .............. one single attack!!!

The bruises and the girl

Last week I blogged about a bruise Jude had on his arm that we attributed to his wheelchair. The nurse put pads on his chair so there wouldn't be any issues. This weekend Jude was kept only in his bed or on his futon. So he didn't have any hard surfaces. However yesterday these popped up on BOTH arms.

 


His left arm is the worst. So I started running through scenario's in my head and I know his nurse did too.

1. Just a fluke ~ Maybe but Jude has never bruised like this before for any reason except for the incident last week.

2. Anemia - Possibly. His Pediasure contains the right amount of iron but his nurse pointed out that his tone issue could be burning to many calories and robbing his body of certain nutrients.

3. Kidneys - Jude did have decreased urine output and continued to have a few issues with that this weekend. His urine has also been a bit dark.

4. Liver - Sigh this is my biggest fear and I am going to choose to believe this isn't the case. Jude takes Felbatol for his seizure disorder. It was a "last resort" medication and one that we had to understand prior to giving it to him. The doctor basically sat us down and explained the reward could outweigh the risk but there was risk. Felbatol is very hard on the liver. However Jude is seizure free because of his Depakene Felbatol cocktail. The doctor also explained that if it damages the liver there is no return from that. Therefore we have lab tests done every three months to watch his liver enzymes and his medication levels. He is really due for another one.

5. Other symptoms ~ pale, intermittent fever, whining in pain a bit. However Jude is also smiling and still communicating in his way with me.

So I sent a note last night to the neurologist and to the pediatrician with pictures to seek their advice. He does have a few spots on his legs but nothing like his arms. So if it was organ related would it be isolated to one area? We will most likely get labs drawn but I wanted to make sure we had the right orders and the right information prior to taking him in and if I can get someone to come to him it would be even better. With all the recent respiratory issues I hate to take Jude into any clinic or ER but we will if necessary. Hopefully this is something easily cured.  

On a good note Emily went to homecoming with her boyfriend this past weekend and had a great time. I am so proud of them so I had to share a few pictures. On Saturday morning they were both up super early! Her boyfriend came to pick her up by 7am and they went to finish building a home for a veteran.


 


Emily said she shoveled rock and help lay the grass. They then came home very tired and got ready for their dance.


It's been a struggle for me to allow Emily to date a senior, but I am glad he has good values!




Friday, September 26, 2014

Reflecting back on my teen years. Not a Jude update.

I had recorded several new shows tonight but I decided to watch one of my favorite movies "The Help". It's one of those movies that makes me sad but I think it's so important to watch. It also makes me reflect on my life with my grandparents because of all the props and scenery throughout the movie. I grew up with my grandparents from ages 14 -19. My grandmother was born in 1916 only two years after the Titanic sank (I used to give her a hard time about that ;) ). Have you ever seen the movie "Blast From The Past?" that was ME! It was like living in the modern era in a 1950's setting.

When you walked up to my grandparents one story house it was a beige color with brown shutters on the windows. There were large trees out front that lined the house and red rose bushes that lined the fences in the back. At Christmas time solid red Christmas lights laced around the outskirts of the roof and white lights lined the windows. Despite my grandfathers health he always got those red lights out.

The front door was so old it stuck a bit when you tried to open it and it squeaked a little as you pulled it back. The first room you saw was the living room. There was a leather "de-van" (as my grandmother called it) couch to the left. Then there were two recliners against the back wall that had a lamp in the middle of them. My grandparents would both sit there and watch TV together the majority of the day. My grandfather would go for a 2-3 mile walk a day, but other than that the only time they consistently moved around was Thursdays. Thursday was cleaning and shopping day. Thursday the house was stocked full of items that were SO unhealthy but made everyone very happy! Everyday when I came home from school my grandparents would be sitting in their recliners and they seemed so excited to see me. I was a huge handful as a teenager and I have always beat myself up for giving them a hard time. Now that I am older I reflect back and realize that I probably gave them a little extra life. I would crawl up in the living room in front of the TV as they sat in their recliners. I watched the very beginning of ER, Friends, The Cosby Show and more with my grandparents. My grandfather even got into 90210 with me and was VERY upset when Dylan was in his accident (ha). We all had long talks and I would always joke with my grandmother about how dusty her couch pillows were. I would beat them and dust would fly out and I would fall to the floor like death had taken over. We had many laughs, many long talks, and many tears. I will forever be grateful to them.

Their kitchen still had an old gas stove that you had to turn on and use a match to light. Picture me turning on the burning and hearing the three clicks of the lighter then throw the match and running. My grandfather was the professional lighter.......I was the scardy cat. So he was in charge of starting the stove. There was no dishwasher so we had to help wash everything by hand. The washing machine was inside the corner of the kitchen but the dryer was in the garage. So my grandparents scooped the wet laundry out of the washer and hauled it down the steps to the garage. There was a long wire line outside in case anything had to be air dried. I would tell my grandparents about the new modern day electronic devices, but they felt more comfortable with their old routine. So I followed along. Looking back I realize I experienced the 50's without living in them. I still remember walking through the kitchen and looking at the old yellow rotary dial phone that hung on the dark panel wall. The orange vinyl kitchen flooring that flowed into the shag carpet that lined the dining room and living room. You can get a picture of my description in an old high school photo of mine.



I had my own room and it was actually pretty large compared to today's standards however the total square footage of the house was fairly small. It was amazing that we lived in a very small house but it felt so big looking back. I had green shag carpet in my room and green paisley wallpaper. I loved it! In the bathroom everything was pink..........even the tile on the walls. We had a gas lighting furnace in the wall that I'm sure was discontinued in other homes due to a possible fire hazard! However my grandfather would light that little furnace every night prior to my bath time. I would walk in that bathroom and it felt as cozy as an electric blanket. I would spend hours soaking in the old deep tub they had. They would knock on the door to see if I was okay and I assured them I was.

I am so lucky. I got to listen to the viewpoint of people that actually lived through WW2, Vietnam, JFK, and so much more. I sat in the floor nestled into that shag carpet and listened to every single word of the captivating historical stories my grandparents told me but I never knew what a treasure those stories were.

My grandparents held my hand even if metaphorically through every part of my life. I had many tragedies that they were a part of and they tried to shelter me from. I guess the best depiction of them would be telling you about a dark and stormy night in Hurst Texas. As a child I was so afraid of storms. I happened to be staying with my grandparents when an awful storm hit when I was very little. They both sat on the couch and grabbed me and put me between me. They each put their arms around me and I gasped a little because I felt so loved. My grandmother said "Don't worry child it's just God reminding us we need a little rain". My grandfather hugged me tight and I felt so very loved. What a great feeling..........I will forever be grateful for it!

Thursday, September 25, 2014

A quick update

Jude seems to be doing better! He is such a little fighter. He is still coughing but not as bad as he was. He is also still having some issues holding his oxygen level at night. We have submitted everything through that Jude is now on a 24/7 continous feed in addition to all his new orders but we still haven't gotten a letter in the mail approving the nursing. So I am guessing we will have to go forward with the full hearing. Rather ridiculous in my eyes but we will follow through the steps. I sometimes picture how a personal care attendant would react if you brought them in to care for Jude. I am sure I would have issues the very first day.

I just wanted to update that he seems to be doing better. It's been a long healing process and we are hoping he only continues to improve.


Monday, September 22, 2014

A big bruise and a great weekend

The Emily's Smile Box Day featuring the Pediatric stroke walk/run went amazing. I was so impressed with the amount of small children that came out to participate in the event. All the little kids put on their little white T shirt and on the back it read "I did it for Jude". They all set off on the 3.1 mile journey and their parents encouraged them the whole way. Their moms told them about a little boy who cannot walk and how they were doing this for him. Every single person crossed the finish line. It was a very emotional moment. The little kids were so proud of their medals and they seemed to truly understand that they had accomplished a big task.





After the race they put together 250 Emily's Smile Boxes to benefit local pediatric hospitals! We had amazing volunteers who packed up all the boxes and took them to different facilities.

Jude is still home but he is coughing literally constantly. I cannot get him to QUIT coughing. When I got home tonight Jude was upright in his wheelchair eating from his G button and enjoying the TV. He seemed a bit uncomfortable so I got him out and put him on his futon, but he was still angry. So I picked him up and put him on my lap as we watched TV. He was happy for about 45 minutes and then he was angry again. So I went to lay him down and I saw a HUGE bruise on his arm. I gasped and I felt so bad for him. I know everyone in his life is good to him so I started searching for answers and I settled on the wheelchair. I think Jude was so toned out he was burying his elbows into the arm rests. However I was still very concerned about the bruise that surfaced within hours. If he has anymore I may have his Liver enzymes tested.


I decided to delete the rest of this blog because it didn't really matter. Only thing that matters is Jude and his health. :).

Saturday, September 20, 2014

THE update

Okay quick run down! After my last post Jude had a horrific night so going home was a NO GO on Friday! He was up to 8 liters of oxygen and was having a terrible time. He literally coughed all night long and it was a cycle. He would cough, I would have to make him gag, I would suction the secretions, and his oxygen would lift. A few minutes later it was the same situation. Eventually mom gave out so they masked Jude again to keep his oxygen up. I mean Nurses do have other patients they can't stay beside one bed with suction in hand.

So the next day I asked to increase Jude's breathing treatments to 4 times a day with CPT. Honestly I think hospitals are amazing and do wonderful things, but sometimes I feel I am the one giving the orders and diagnosing. I caught that one of Jude's seizure medications wasn't being given, that they had given to much Miralax (omg I won't even go into it), requested more breathing treatments, asked for the CPT, and ripped the cannula out when it sent him into an autonomic attack. I truly think nurses are underpaid and understaffed. Poor things.

So during the day Jude actually experience a horrible full on Autonomic Dysreflexia attack. The nurses were stunned and were asking "what IS this??". I explained that Jude used to have 5-7 of these a day when the Baclofen was flowing into his Central Nervous System. That now we are down to 1 or 2. They had never seen one and relayed the information to the doctor. There isn't much that can be done from the witness of the attack but it was reassuring that someone else besides our immediate core people saw it. I hated Jude went through it but now we have it on record.

Skip to last night. After his increased breathing treatments and suctioning Jude went to sleep. I was laying there watching TV and I heard him stirring. I tried to be very quiet because I knew if Jude woke up he would cough and if he coughed after waking up he would vomit. However suddenly I heard ma............ma. I thought I had fallen asleep and was dreaming so I waited and I heard a little softer.........mom..............ma. OMG! I said "I'm here Jude. I am right over here baby!" Then he went back to sleep. The only thing I can figure is that Jude woke up and was scared in unfamiliar surroundings and somehow he found a way to call out to me. I don't know the explanation but I can die happy he said my name twice in a row!

 So today Jude started the morning at 4am! Hi ho a dairyo the farmer is so tired! You heard me sing that didn't you? We spent from 4 am - 6:30 am trying to get Jude to breathe correctly. We suctioned, we gagged, he vomited.....it was lovely. So when that ended I curled back into my ball and suddenly I heard "ahem" and woke up very startled to a doctor standing over my bed. It had been an hour and the neurologist wanted to talk to me about Jude. I wiped my blurry eyes as he handed me a prescription and I tried to interpret his words. I got the gist that the Clonidine patch is a no go, the Oral Clonidine is a go, and to follow up when the Virus is gone to further explore the Baclofen pump mystery.

I laid there a bit longer and then Jude started coughing. So I got up, got ready, and armed myself with the suction. Overall I thought Jude looked better! Was he well really...........NO!!! However he looked better! So when the floor pediatrician came in he noticed I had taken Jude's oxygen off and put him on room air. Jude was holding at 93 oxygen levels. The doctor didn't seem to impressed, but I pointed out that Jude has his own issues and this virus is just causing additional issues. That a 93 o2 state isn't that bad. I told him I was concerned about Jude's urine output but that the only thing we cannot do at home is IV'S! Just then Jude decided to have a massive storming episode. He coughed and coughed, I suctioned, his oxygen went to 80 and wouldn't come back up, and then.......he vomited. Well crap! So the doctor said he would be back later to consider releasing him. He said, "If this was a normally healthy child there is no way I would release him. I understand you basically have a mini hospital at your house but you have to know that if in anyway he shows that he is worsening you have to bring him back immediatley. I mean 911 immediate". I assured him I understood. Then Mike walked in.

At that point I left to get Emily ready for homecoming next week. We went to ONE MILLION places (lol). Then we went to the facility that is hosting her Emily's Smile Box charity event tomorrow to get everything set up. Then we came home and greeted Mike and Jude. Yes, they let Jude go. We might be second guessing ourselves tonight because Jude has had a tough night, but I know he is more comfortable here. Mike is in Jude's room now suctioning him as he coughs, gags, and vomits. It seems to be a never ending cycle. I feel so horrible for Jude.

Tomorrow we have everyone strap on their running and walking shoes. They will wear shirts that display they are walking for Pediatric Stroke Awareness and on the back of the shirts it says, "I did it for Jude!!".  AMEN!