Wednesday, September 17, 2014

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.


Monday, September 15, 2014

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.

Friday, September 12, 2014

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

Wednesday, September 10, 2014

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.




Sunday, September 7, 2014

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.