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!

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!

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.

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. :).

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!

Jude's update

I'm on my phone at the hospital so writing this blog should be interesting. Jude's coughing consistently, running a fever, and just not a happy camper. He is having problems regulating his o2 which seems to be the norm lately. Good news is he has wet diapers again!! Also since putting him on a continuous slow running feed the vomiting has subsided. 

My favorite neurologist of Jude's just came in. He said he thinks we should keep Jude on the oral dose of Baclofen but remove the Clonidine patch. We are going to take things  step at a time and see how Jude reacts. He explained there are really only four doctors in the area that deal with the baclofen pump and if we wanted another opinion he had a guy. However we may want to see them
In the office vs here. He wants Jude home ASAP because there are so many germs up here and Jude's immune system isn't stable. So if Jude keeps his food down and stays stable overnight they will send us home. However they did just have to mask Jude vs the cannula for oxygen. 

The neurologist said what we already know, that Jude is not textbook. He asked if the other doctors have explained why his oxygen levels have given us issues since the surgery but I explained they had no explanation. I told him I fear Jude may never return to the condition he was prior to the pump placement. He then asked about taking the pump out and I explained they said they wanted to wait and he replied "of course get him stable".  

So their plan of actionis  is focusing on his illness right now. They believe it's viral but will have the test back soon.  Once he gets passed this illness they will move in to treating the issues from the surgery. Either that or at least get us to someone who might have an idea what happened. The neurologist did agree that the pump pushing the Baclofen in just obviously didn't work for Jude. His case is so complicated and they have to take baby steps. 

Looking back to raising Emily it still amazes me that we take such a sick child home. One that needs oxygen and so many other interventions but I'm thankful we can. I'm thankful we have the modern technology of having our own little hospital at our house. 

So Jude's still a mystery. I'm still praying he hangs out with us a lot longer and that this pain decreases for him.  I think we have to adapt to Jude's new condition  and learn how to better manage it out of the hospital. 

Thursday morning update

Not much to update this morning. Jude had a decent night. His GI came to see him and believes the Baclofen pump doesn't work for him and needs to come out. However again he isn't strong enough for surgery yet. They are thinking Jude caught a viral respiratory illness on top of these other issues and that's why he is admitted. However I still think there is a lot of guesswork and I am hoping they do bring in the Baclofen pump specialist. I will be going to the hospital later today and staying tonight. I am not sure if I will be at work tomorrow or if I will have someone sit with him.

The Palliative care team from the first hospital did call the other day but there still isn't much they can do until they see Jude. We also requested one at the current hospital but we haven't seen them yet. I am sure that will be later today.

In addition the doctor said the Dallas hospital is overflowing with pediatric respiratory cases. So wash your hands and keep your kids at HOME if they are sick please.

Thanks!

Wed night update

Jude's x rays and blood still look normal so he is still a mystery. It's possible he has a virus on top of the other issues he has been fighting. We just don't know the difference between the mild illness and the serious one anymore. Mike said they are talking about bringing in a specialist regarding the pump and I think that's a wise idea! Jude seems to cycle throughout the day through phases of being alright and then having issues with his o2, tone, temperature, urine output, lethargic, pale, etc. Jude has been admitted so I am sure we will find out more tomorrow. As hard as it is being away from him I am at home tonight. I will sleep tonight and then switch off tomorrow night. I guess we have learned how to conserve our energy in hospital settings.

Mike called me earlier and was pretty upset which is understandable. I think we are both so exhausted that you start playing every scenario in your head. You play them all even the worst ones. Whether those scenarios are valid or not when your mental state isn't stable you cannot help put think of them. So forgive us if we cry on you or say things that might not come to pass.

I have mentioned I wonder about taking Jude into the hospital. Today Charlotte called with reason and said Jude needed to be seen. Sometimes I wonder if the doctors aren't at a loss and just done with us. I wonder as much as I hate the word if Hospice could be helpful for Jude. If maybe their understanding of chronically ill patients could benefit him in some way. I don't know. Not sure what I know anymore. Not sure if it's good for Jude to be in the hospital and not sure anything would ever change bringing him home.

We appreciate everyones prayers and concerns. Mike and I are both pretty public and our emotions play out like a play on the set of a stage. We appreciate everyone bearing with us and all your sweet messages. We will get back to them as soon as we can and will update when we know more.

At a loss

Jude is going back to the hospital. This time he is going to Dallas.

I don't even know what to say or post anymore. He is coughing, not urinating, running a fever, is toned out. Among other things. I am not sure if this is something new, Baclofen withdrawal (still), side effects of oral Baclofen, or what.

I hate Baclofen. I hate the Medtronic pump.

I want our lives back.

Jude's saga continues

Jude had a horrible night last night. I was up most of the night holding a suction to his mouth because he was coughing so hard he was vomiting. Then he started running a fever. So then I started running down the list of what this could be
Baclofen withdrawal?
Aspiration pneumonia from the vomit during the attacks?
Viral infection?
A pump infection?
I knew Jude needed to go in to get check out since something minor can quickly escalate. My plan was to go into work and get everything I could caught up. Then I would head home and take him the the pediatric ER at the hospital we had the pump placed at.

My plan worked until Charlotte and I put Jude in the van to head to the hospital and Jude started violently throwing up. I expressed my concern driving with him in that condition. I ended up stopping at Roanoke fire dept and they helped me transport Jude. They were SO nice. They gave Jude oxygen, fluids, and Zofran in the ambulance. Once at the ER they ran dozens of tests and looked at his history over the last few months. The doctors were stumped and felt so bad for Jude. He would not stop vomiting and had an episode so violent in X Ray that even the men we calling Jude, "poor baby".

His chest X ray looked good however they pointed out aspiration pneumonia can show up on an X ray 72 hours after a fever. We know that because it's happened before. The abdominal X ray was negative, his urine was negative, and his stomach was soft. His blood work did show elevated white blood cells. That could be anything. There were two doctors in the ER and we were dealing with both of them. The first one wanted to admit Jude because of the vomiting and because she felt more tests needed to be run. She also ordered some more IV fluids. Soon the other doctor came in and explained some more test results. I explained that I would like to make sure Jude got his IV's but then I was considering taking him home. I explained that Jude hasn't been the same since the Baclofen surgery and even if this isn't related it just seems to be another complication. I pointed out that there entire waiting room is FULL of respiratory patients and I didn't want Jude catching something else on top of all his issues. I told him we know how to monitor Jude and just like earlier today when we transported we know how to make the right decisions. I then said "Jude isn't the same. I'm not sure if this is the start to aspiration pneumonia, if it's a stomach virus, if it's baclofen withdrawal, spinal meningitis, or if this surgery was to much. Sometimes I wonder if all this is just because the surgery was to traumatic for him and I wonder if he will ever be the same again." I told him I wanted to take Jude home and if he continued to get worse to take him to Dallas Medical City where they helped find the solution to the complication after his surgery.  He replied that it IS possible the surgery was just to much for Jude. Then he said I seemed very medically educated and everything I said made sense. He said Jude is just a sick little boy.  I requested some Zofran and some Erythrimiason. My reasoning was to stop his nausea and that if we are having another issue with his bowels slowing that the antibiotic would stimulate them. The doctor agreed and gave us a prescription for each.

The drive home was NOT easy! Jude retched the entire way home. However Jude gave me a BIG smile when we got home so I knew he was in the right place. I am trying to feed him Pedialyte but it's not going so well. If Jude doesn't continue to improve then we will head to Dallas, but let's hope he does.

Sometimes I wonder if I should just keep Jude as comfortable as possible here but then I panic and realize he isn't doing well and rush him in. I am just torn.

Because I believe in him!

Dear Doctors and Staff,

I know you get tired of hearing my voice whenever I call you. I can hear the tension when I announce  "Hi this is Jennifer Ortiz..........Jude's mom". I know you are tired of hearing how Jude isn't responding properly since the surgery. I know you are sick of hearing about Jude's nursing issues and I know you get tired of Jude's ever changing medical conditions.

I make these calls and I work so hard for him because to me he is worth it.  When all you see is an improperly functioning brain, I see a little boy. Sometimes when I am in a hospital setting and I listen to your words I begin to see Jude how you do. I see how extreme measures are being taken to keep Jude with us. Without the organ damaging seizure medication he is on Jude would probably not be here. This was proven when we had to remove all the seizure medications after the surgery complication. I saw how Jude's body and brain responded. I see how his feet turn in from lack of use, how his skin grows pale from lack of sun and medications. I see the monitors and how they tell us that Jude's body is tired and it just doesn't function like ours does. Yet that hospital sight only lasts a few minutes and then I see my Jude again.

So as annoying as I may be to you... Jude is more important to me. He is my only little boy. So while you see a body that will eventually give out I see a struggle worth fighting for. I treasure those little smiles I get every night when I get home from work. I see the brightest eyes of a child that will forever be young and curious. I see a boy who knows way more than you give him credit for. A child that may not be able to voice his thoughts but can communicate to you if you let him. I see a brave little soul that has fought harder than any adult I know. He has done more in his young life than I will ever accomplish in mine.
 
I see someone that deserves your attention, someone that deserves your respect, and someone that will care for you if you care for him.

I see a little hero.

Sincerely,

Proud mom to Jude

A few video's for you. Looking better but a few breathing issues.

Jude looks more like himself. I am getting responses, no huge attacks, and he is laughing

However he is really struggling with breathing well tonight. I am not sure if it's withdrawals or if it's the oral Baclofen causing his throat to relax. We have him hooked up to the Pulse Ox machine and we have oxygen ready to go if needed.

So baby steps forward...........we will take them.

The nursing debacle explanation

I thought I would explain a little on the nursing issue. I forget that not everyone talks "special needs" language.

Many of you remember that when Jude was three months old we took him into Cook's and received his diagnosis. When you find out your child is having continuous seizures you have to make rapid decisions. You cannot drop a child in that condition in daycare. That means someone has to quit their job and immediately. Since I held the primary insurance Mike had to quit. He spent two years taking care of Jude. Two years of medications, trying to feed Jude by mouth, doctor's appointments, throw up, sickness, and more. When Jude was two years old he presented with aspiration pneumonia and that's when we found out Jude couldn't take anything by mouth. We went home scared and afraid with a feeding pump.

During the above time period Jude qualified for the medically dependent children's program. He had to stay a night in a nursing home with Mike and this amazing program was in place. It took a long time to qualify but a friend helped us through the system. Part of this program is that Jude qualifies for medicaid based on his condition. Due to his illness and his feeding tube Jude then qualified for nursing through our primary insurance and through Medicaid. When Jude was little we had a small battle with both offices about the need for nursing but with letters of medical necessity we won. So Mike went back to work and Jude found two amazing nurses who lovingly care for him when we are away.
 
Fast forward to 2014. Prior to Jude's surgery Medicaid requested fifteen days of nursing notes on Jude. He was actually doing well then. The seizure medications were controlling his seizures and he was in moderately good health. This is really attributed to the care he receives from his nurses when we are away. They took those notes and said they saw reason to decrease Jude's nursing hours from 70 a week to 28 a week. They believe a private care attendant can do what the nurse is doing. Keep in mind a PCA cannot deliver controlled substances (like Valium), are not trained to listen for aspiration into lungs, etc. I do not believe Jude was ever well enough to not have a skilled nurse. However since that time period Jude's health has rapidly deteriorated. I obtained five letters of medical necessity. I had our nursing agency fax in thirty eight pages of nursing notes showing controlled substance use, rescue methods, and oxygen. They also showed continuous feeds with caution due to aspiration, the autonomic dysreflexia attacks which are life threatening, and more. I had requested a fair hearing in regards to Jude's nursing. I went into the hearing confident and truly believed they would see why Jude needs his nurses. However, what I got was that the state assigned doctor had not even seen all the information I sent them. They apologized. They said they had the information but it had not been properly uploaded. So they promised to upload it and have the case reviewed.

I have called several times since asking if the doctor has reviewed the case and if a decision has been rendered. I wanted to avoid the hearing if possible. It's extremely stressful and coupled with Jude's recent health issues it becomes very overwhelming. I keep being told that nothing has been reviewed and a decision hasn't been made. Finally today I received a call that there is no new update and to be at the hearing Monday 9/15 at 9am. I just lost it! Then I took action. I called Mike and asked him to take a loan against his 401k. I then contacted our attorney and retained him on Jude's behalf. I then contacted the Palliative care team at Cook's who got social services involved. They reviewed Jude's case and were astonished that we are going through this. They contacted the neurology team about possibly having one of their members in the hearing but that may be hard to accomplish. Then they called the hearing officers office and asked if there was anymore the hospital could do. Then I called Jude's nursing agency to get a copy of the thirty eight page nursing notes myself so I could give them to the attorney. I asked them, "Have you ever had someone in Jude's condition turned down for nursing or go through this". She replied, "no..........I just haven't".

I understand people take advantage of the system but we don't. We don't ask for SSI for Jude although I know others need it. We both work, we carry private insurance, and we do the best we can to contribute to society. So it's very frustrating to me that Jude is being subjected to this. He is just a sick little boy who needs his nurses and his parents. I plan to fight this with all my might but sometimes it really just becomes to much.

Charlotte said Jude hasn't had attacks today but he has had apnea. That's a bit scary to me.

The Baclofen was removed.

Jude had all the remaining Baclofen removed from his pump yesterday and they inserted saline in it's place. There is Baclofen that remained in his catheter and it should be gone today. So I will start with the good news that Jude was great last night! He still wanted to be held but he didn't have any autonomic attacks. He was very sweet, loving, talkative, and back to his oldself. He did have an attack earlier in the day with Charlotte, but last night was great.

Now the not so great news is that the doctor said the next four days will probably be very difficult. He said Baclofen withdrawal can be really hard to get through. We are staying on top of giving Jude 4ml's of Baclofen every four hours so I am hoping this is an easy transition for him. I plan on checking in with Charlotte soon to see how he is doing.

I am still calling checking on the nursing and I am still being told the doctor hasn't reviewed the case. I am holding out hope I don't have to attend this hearing on Monday.

We are having a GREAT day...........oh wait nevermind...........

We started off the day with a tad bit of excitement. I had given Jude oral Baclofen at 3am and he had done very well throughout the night. He woke up all smiles and seemed more like himself! He was urinating again and just seemed to be pretty content.

Then all hell broke loose again. Jude had multiple attacks, his oxygen level would not stabilize, and his heart rate was out of control. It's the first time the weekend nurse has really seen what we have been dealing with each night and he actually broke down in tears. He said there is no way we don't need a nurse and that if we have been dealing with this everyday he feels so bad for Jude, us, and Charlotte. He is very upset with the doctors.

It's hard gaging if it's an actual emergency with a child in Jude's condition. I am sure other special needs parents can relate. He is pale but that could be medicine. His urine is very decreased but that could be from the attacks and he eventually ends up urinating. His heart rate and oxygen are all over the place but they eventually stabilize. He is VERY rattled (congestion) but it's mostly mechanical. He is miserable but that could be Baclofen withdrawal. It's my best educated guess and I am just always hoping I am making the right one. We are about 30 minutes out from another oral Baclofen dose and Jude is moaning and very upset. He is getting to the point that he is miserable for hours but maxed out on medications.
 

I know I am tired of all this so Jude has to be exhausted. I also wish that the hearing officer and doctor that has been assigned to Jude's case would actually come in our home and witness what Jude is going through. I actually believe this should be mandatory for anyone to receive or lose nursing hours. A doctor won't prescribe medication over the phone without seeing you in person so why make such an educated decision without seeing the patient in question?

Jude had a doctor appointment Tuesday. If he gets worse we will definitely take him in. Hoping he gets some relief soon. Ps. I hate Baclofen!! I know it's been great for some people but I personally cannot stand it.

Withdrawals and the attacks

Jude did not have an easy night yesterday. He had a very bad autonomic attack about 6pm. Mike's poor mom was here and she was very distressed over it. We got him calmed down and when we put him to bed I noticed his temp was elevated. It was 99.8 axillary which is nothing to be to concerned about but I still took a mental note. About 2:30am Jude woke me up moaning and when I touched his arm he was burning up. His axillary temp was 102.8 which means Jude was actually almost 104. I put a call into the on call doctor to see is that constituted an emergency. She said it did sound like Jude was going through Baclofen withdrawal and advised to bump the oral Baclofen up and keep it in him around the clock. She said it can be hard to gage when and how much Baclofen to give him. In addition to the Baclofen I gave him some Motrin to relieve pain and bring the fever down. This worked but his breathing becomes so erratic after the oral Baclofen because his respiratory gets so relaxed. I kept getting up and repositioning him so he would breathe easier.

Today Jude was spastic but the good news is his attacks looked........better. He still had them but he didn't get red in the face, his neck wasn't hyper extended, and he wasn't sweating. However the nurse still treated him around the clock with Baclofen and Valium due to his tone, heart rate, and pain.

Tonight Jude just started wailing and it was so sad. Jude is always a happy little boy. We believe this is either the Baclofen withdrawal or a uti/kindey issue. It could also be a combination of the two. His urine output is not the best and it's a bit dark. I increased his fluids again. My fear is all the medications are becoming to taxing on his kidneys.

Watching your child go through withdrawals from a drug is terrible. I just feel awful for him. The pump is programmed to go down again tomorrow but I am wondering if it already went down today which created his symptoms. The doctor seemed a bit unsure when he was programming it. I hope that's not the case because that means on Monday it will go right back to what it was when it was flowing. We are going to set our alarms and stay on top of the baclofen. It really worries me that this can cause organ failure and other serious issues. Hopefully Jude can get through this.

A whole LOT of information, another procedure, and a new care team for Jude.

So we met with the PA today at the doctor office who talked to us about removing the Baclofen from the pump and inserting saline. She then measured the amount of baclofen in the pump and went to go talk with the doctor. The actual doctor came back in and told us that the Baclofen was higher than he thought in the pump and that they would need the simply turn the pump down at this session. Then he programmed the pump to go down again on Sunday. Finally he scheduled another appointment on Tuesday to perform the procedure to insert the saline.

He answered all my questions but the encounter didn't start off fabulous. I explained I wanted to find out what was going on with Jude. He responded Jude didn't have a normal brain and that's what's going on. That Jude's system doesn't respond like ours. You can picture my face right now can't you? I have cocked my head to one side and thinking "Oh no you didn't". So I told him, "I know Jude's brain is not normal and let me reiterate that Jude didn't have these issues prior to the surgery therefore it leads me to believe it's either the medication, the surgery itself, or the hardware". After that we were both very kind to each other and worked together to try to find the best possible solution for Jude. We talked about my conversation with the neurosurgeon and I was impressed that he said it's just not a good time to put Jude under anesthesia to remove the pump. He knows Jude isn't in the condition for that. He explained that removing the Baclofen from Jude's Central Nervous System will give us a place to start. If Jude gets better and the attacks weaken then our answer is found! If they don't then at least we know it's not the Baclofen itself. So then we ask if it's because we need more Baclofen, if something happened in surgery, or if it's the hardware. So to rule out one measure of the hardware they are going to take a sample during the procedure Tuesday to see if there is an infection has developed around the pump. The doctor assured me that if there is and infection then Jude can go awhile prior to removing the pump. I felt relieved that we finally have a plan of action.

I also asked the doctor if Jude's attacks that drive his heart rate so high could result in cardiac arrest. He said generally he sees that from the heart beating to slowly but it is a rare possibility. I know doctors think us moms overreact so then he asked, "just how high is high?". I replied 210 or more at times. He said "Oh that is high". He said if he recovers then not to worry and gave us some tips on getting Jude's heart rate lower including rubbing the side of his neck and ice water on his face. I told him that Jude looks much better to me the last two days but at times during this situation I have been scared for his life. I explained that I didn't want to lose Jude because of a decision we made to try to alleviate his pain. He was very sweet. He explained that we cannot look at the surgery that way. That Jude's situation wasn't "good" before the surgery and we were just trying to help him. He said children in Jude's situation (and he paused) die very easily (ugh). He then recommended a Palliative care team for Jude. He mentioned end of life care, but I know he didn't mean it that way. He meant a team of specialists to make sure Jude is getting the best care possible and the best service possible. It's to relieve stress on us and on him. It's generally put in place for children with chronic illnesses. I took the liberty of looking it up (of course) https://www.cookchildrens.org/SpecialtyServices/PalliativeCare/Pages/default.aspx

I think that term "palliative" upset Mike and I can understand his sadness. However I truly believe the doctor was telling us about the team just to help our situation and Jude's. So let's pray that the next week leads to some answers.

Poor Jude came home from the doctors. Laid down on his Futon smiling really big, threw up, and went to sleep.

hi ho hi ho to the doctor we go

We go back to the doctor today. They are going to take the Baclofen out and put Saline in it's place. We will see if this stops the attacks. They will put Jude on oral Baclofen and I will ask if we need to add Artane to that as well. I have lots of questions for the doctor regarding how long it will take to see results.

Jude did have a massive attack last night. However he did look good overall when I got home last night. I think it's because we increased his fluid intake. I think he was getting a little dehydrated.

Hopefully this will be out resolution for Jude.

The pump debacle

I received a call from the neurosurgeon's nurse this morning checking on Jude. I explained to her that Jude had several attacks this weekend. She said she was going to talk to the actual neurosurgeon and call me back.

It was in fact the doctor that called back (yay). He said that at this point he would suggest taking the pump out. Insert major curse words. He was very nice and understood how frustrated we are for Jude to be going through this. I explained that his therapist again stated she would have Jude hospitalized until they found a solution. I asked the doctor if in his years of placing the pump if he had ever seen someone have this reaction. He said "no". I also stated that I understand that they are grasping at diagnosis with the newest being the autonomic dysreflexia. He said he had a few issues with that diagnosis because he just didn't think the surgery would affect that portion of Jude's body. However the Baclofen flowing through the CNS could. He also believes this is not a reaction to the actual materials of the pump itself. I told him the neurologist stated we could turn the pump off. He responded that you cannot actually turn it off but you could remove all the Baclofen and replace it with saline. Then if the saline makes a difference we know it was the response of the central nervous system and the baclofen. So I think that will be our first action. If that doesn't help then we will go from there. If it does then we will discuss removal.

Happy Birthday Jude..........sorry it has to be so hard.

Happy Sixth Birthday Jude! 9/2/14

When you were a baby I would sit closely next to your crib and look at your sweet little face. I would watch your chest raise and lower with each breath and with each breath I would relax a little.

The doctors told us your life expectancy was five. However an amazing doctor stepped in and told us that no one could put an expiration tag on you, but you. I watched you grow and I watched how you and your sister connected even though you had no voice to harass or annoy her with. She has learned so much from you and I truly believe you have learned a lot from her. When Emily speaks I watch your eyes search the room for the source of her voice. I watch your eyes light up when she mentions your name. I see Emily truly believe in her charity because she believes in her heart she did it solely for you. I watch your connection and it's amazingly special. I don't think it could ever be replaced.

 

You go through so much. So many medications, painful afflictions, and battles for you life. Yet through every single step you constantly do your best to put on a smile.

Lately I have watched you suffer more than you ever should. I watch your breathing become erratic, your heart rate sky rocket, and oxygen strapped to your nose on a regular basis. I get so angry that you are in this situation and that the doctors seem to think that since your "special" you should just adapt. However you constantly remind me that you are a fighter and that you will give this everything you have.

 

 

In my mind you are truly a super hero. You have done more in your short lifetime than most of us will ever accomplish. I am so proud to be your mother. I couldn't ask for a more amazingly perfect little person in my life. Thank you for teaching me what's important and for being the best son!

Happy Birthday Jude. I love you more than words.