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Joshua's Story
"My ex wife, Nicole, and I found out in July 1999 that she was pregnant with our 1st child..."
Naturally, since it was a planned pregnancy, we were elated at the news. We were given March 6, 2000 as the due date. Everything was going along smoothly and in November we went in for an ultra sound in hopes of determining the sex of our child.
As luck would have it, the baby didn't cooperate so we were not able to determine the sex. What the ultra sound did revealed that Nicole had very little amniotic fluid. She was placed on complete bed rest and her care was transferred from the clinic in Everett WA (where we lived, about 30 miles North) to the University of Washington Medical Center in Seattle.
The very next day (the day before Thanksgiving) at UWMC, Nicole underwent numerous tests and ultra sounds in an effort to find the cause of the low amniotic fluid. After spending the day in Seattle, we were told that Nicole would be hospitalized until she had the baby and the longer she was hospitalized the better.
After a very long stressful day in Seattle, I returned home that evening to pack up the things Nicole would need for an extended hospital stay, cancel our Thanksgiving Day plans (it was the 1st we were going to host and Nicole was going to make), call family and friends to give them the news and try to get a good night's rest before returning to the Hospital to spend Thanksgiving with Nicole.
About 9pm that night, I was called and asked to return to the hospital and if possible have someone bring me, which I was able to do. In the short time I was home, Nicole had undergone more testing. Another ultra sound had revealed a problem with our baby's brain. What they were able to determine was that our child had Dandy Walker Syndrome. Dandy-Walker Syndrome is a congenital brain malformation involving the cerebellum and the fluid filled spaces around it.
Obviously Nicole and I were devastated by learning our child had Dandy Walker Syndrome. While neither of us had ever heard of it, we knew a brain malformation wasn't going to be a good thing. The silver lining in the Dandy Walker news was they thought they has discovered the reason for the low amniotic fluid and released Nicole from the hospital on Thanksgiving Day. The same friends who took me back to the hospital were kind enough to have Nicole and I over to celebrate Thanksgiving, even though neither was us were feeling particularly thankful.
A few days after Thanksgiving, we returned to UWMC to get the results of many of the tests that were done while searching for the cause of the low amniotic fluid. Her OB at UW, Dr. Zane Brown, had an interest in virology so he did tests that normally are not done. Cytomegalovirus (CMV) was found in Nicole's blood, urine, and amniotic fluid. Having never heard of CMV and still reeling from the DWS diagnosis, we asked what CMV was.
It was explained to us that CMV is the leading cause of birth defects in the US and the leading cause of deafness worldwide and it is not normally tested for because it is so common and only causes a problem if a pregnant woman gets an initial infection during the pregnancy. CMV is a common virus that approximately 50% to 80% of adults in America have by the time they are 40 years old. It is often asymptomatic. CMV is a virus in the herpes simplex family. When CMV is contracted as a child or an adult, it is essentially harmless. A person will subsequently build immunity to the virus once they have contracted it.
Dr. Brown then told us that there was a 95% chance our child would be a still born due to complication from the early CMV infection. Feb 20, 2000, Joshua David was born alive and checked into this world at 4 lbs 8 oz and 18 inches long. I will never forget that miraculous day. Knowing that UWMC is a training facility and expecting a still birth, Nicole and I were asked if we would allow extra people in the delivery room. We agreed knowing that even if our child was a still birth, the birth would serve as a learning opportunity for lots of people.
In addition to Nicole, her mother, and I, in the delivery room we had the delivering doctor and his students, the anestheologist and her students, the nurses and their students, the NICU team and students, and the grief counselors with their students. In all, there were probably 75 people crammed into the delivery room. When Joshua took his first breath and started to cry, Nicole simply said "he is crying". With that, there wasn't a dry eye in the room.
Because of his low birth weight, he had to spend one week in NICU at UWMC. Since birth, he has continued to beat all the odds and everything thrown his way.
In utero, the CMV primarily attacked Joshua's brain. All of his many disabilities are the direct result of his prebrith brain injury. There is more to this list, but I am just going to cover the primary issues.
He is legally deaf (he hears about 50% with a hearing aide in his right ear, his left ear is profoundly deaf and even a hearing aide won't help).
He is legally blind. His vision was measured at 20/2000. They tell us he can see color and shape but no detail. Thanks to a recent eye surgery (in Nov 2008) they are telling us he is seeing in 3-D for the 1st time.
He has Epilepsy. Thanks to a very highly specialized ketogenic diet, his seizures have been very well controlled for the past 3 years. The downside of the diet is that 1/3 of the people on it bruise for no reason. Joshua gets finger tip bruises from diaper changes and has actually bruised the back of his legs by arching while sitting in his wheel chair.
He has Cerebral Palsy and almost no purposeful movement at all. He is 100% dependant on someone to do everything for him. He cannot even sit up on his own.
He is fed by tube. His neck muscles never developed so most of what he tried to swallow never made it to his stomach but most of it made it to his lungs and caused chronic lung disease and almost constant pneumonia.
The thing that bothers me the most about Joshua is, after Nicole and I had divorced in 2006, against my wishes, she had tracheotomy breathing tube placed in Joshua. Nicole convinced the Dr's to place the trach to give her and Joshua's home health nurses an easy and safe way to clear his secretions. My opinion has always been and always will be, remove the KNOWN allergens from his environment and the secretions decrease to the point where the medication would work and the trach would not be needed. The known allergen I am talking about here is the 3 cats that she let sleep with Joshua after she found out he was allergic to pet dander.
After a lengthy battle, I was made the custodial parent in Jan 2008. My two immediate goals became get the meds under control and get rid of the trach.
In Feb 2008, Joshua had a follow up appointment with the doctor that placed the trach. Nicole met us at the appointment and told the doctor that Joshua was happier and healthier in just 1 month after living with me. The doctor agreed that she had never seen Joshua look as good as he did or his lungs sound as clear as they did in the 3 years she had been seeing Joshua. The doctor's exact words were "if the climate is that much better over there, maybe we should all live in Bremerton". The climate from Seattle to Bremerton didn't change all that much, just the fact I didn't have 3 cats sleeping with him!
When Josh came to live with me, he was on over 40 different medications. I think that Nicole's belief was everything could be solved with medication. It got out of hand to the point where Joshua's team of doctors were not communicating and no one had a clue what medication was working and what wasn't because it was counteracted by something else.
In addition to the diet to control his seizures he was on 3 different seizure medications. I asked if the diet was working, why he needed 3 seizure meds that he was on prior to the diet. Starting in April of 2008, we started weaning him off Depakote, the worst of the 3 (of course he was also getting the most (750 mg per day) of this one!). His last dose of Depakote was in September 2008 and he has remained seizure free without it. We have also managed to get him completely off of Topamax (300 mg per day) and and are working on weaning him off of the zonagram (down to 50 mg a day)! He should be completely off all seizure meds come January 2010!
Currently Joshua is getting Prilosec, L-Carnitine, Zonagram, and QVAR as prescribed meds. He gets scheduled doses of Calcimix, Vitamin D, Selenium, and a multi-vitamin once a day. He gets meds once a day instead of the 3 times a day he was getting them when I became the custodial parent.
That gives you a general idea of Joshua in the "early years". Now for the roller coaster ride of being a cCMV parent.
2009 started off so well that it looked like my goal of getting rid of the trach would become a reality. On Jan 13, the doctor who placed the trach gave me trach caps with the goal of having it out by August. I left that appointment so happy I was crying when I called my mom to tell her. From that point on the roller coaster crashed.
Jan 14 2009 I got a call from the GI clinic (feeding tube) telling me that the biopsy they did in Nov 08 (on Joshua's stomach ulcers) showed that Joshua had Celiac disease. Over the phone I was basically told that the options were to change Joshua's keto diet to a gluten free diet or Joshua would become malnourished. Taking him off the keto diet would leave the seizures uncontrolled again. Basically, Nourishment = Seizures and Malnourishment = No seizures. How does a parent make that choice??
Jan 15, 2009 Joshua got off the school bus with a 102 fever. We (the nurses and I) gave him Tylenol and the fever went away.
Jan 16, his temp was 98.3 when I left for work, so we decided to send him to school. School called at 9:30 and said he had a 101 fever and to come get him. I took him to the pediatrician's office and had to see a doctor that he normally doesn't see. He was diagnosed with Pneumonia. The doctor called in a prescription for antibiotics and sent him home. Got him home (1.5 hour drive) and went to get the antibiotics. IDIOT called in for liquid which is loaded with sugar that Joshua can't have because of the diet. It was now 9 pm on Friday night and Joshua needed something, so we went ahead and gave it to him.
Jan 17, he struggled throughout the day but was no worse so we stuck with the doctor's plan. About 9 pm he had a full blown tonic clonic seizure (1st seizure in about 3 years since the diet was started). We blame that seizure on a lowered seizure threshold from the illness and the sugar in the antibiotic.
Jan 18, he woke up at about 5:30 and his heart rate was over 190. We called 911 and he was taken to Silverdale Harrison hospital in Bremerton. They stabilized him there and then airlifted him to Children's in Seattle where we spent the next 10 days.
A few things we learned from that hospitalization. The pneumonia that was diagnosed on January 16 was really RSV!!!! Joshua's keto diet was already gluten free so now they are back to square one trying to figure out what the biopsy results from November 08 are really showing. Good news is we didn't have to change his diet or medications at all!!! Bad news is in December 2010 they still haven't decided anything from the 2008 biopsy. Frustrating!
In August 2009 Joshua was at his mom's for his 5 week summer visitation as per our parenting plan. She had him out at the horse track and claims he had a seizure. She can't say what kind of seizure just that it went "from one to another to another and lasted an hour". Joshua was airlifted (2 helicopter rides in a year!) from the race track to Children's in Seattle.
Some mutual friends met us at the ER. These were friends I had maintained contact with but hadn't seen in about 4 yrs (since Nicole and I divorced and I moved to Bremerton). To give you an idea of how close we were to these friends, they are the same one who took me back to Seattle the day we learned about the Dandy Walker and the same friends that had us over for Thanksgiving dinner the day Nicole was released after the DWS diagnosis. While visiting with them and them observing Nicole's interactions with Joshua and the doctors, one of them (who is a mandatory reporter) decided something wasn't right and called in a CPS referral against Nicole.
The concern that led to the call was a fractured femur that Joshua likely suffered from a fall out of bed that happened when he was with his mother in July 2009. To my knowledge Nicole still has not sat down with the CPS case worker to get that case closed. She did however make a retaliatory CPS referral and my life has been hell ever since.
Her CPS referral against me was based on a black eye that Joshua suffered at school. It was documented by his 1 on 1 nurse at school how she "suspected" it happened. The injury happened on a Tuesday and no less that 15 medical professionals (including Nicole who is now a medical assistant) saw it and questioned it on Thursday of the same week. The majority of these medical professionals were doctors at Seattle Children's hospital who saw him at his appointment that day. They all asked about the eye, looked at the documentation, and had no problem with it.
I dropped Joshua off the next night for his weekend visitation with his mom. That Sunday, the nursing supervisor from the Seattle Maxim office "advised" Nicole to take Joshua to Seattle children's ER to have him seen for the black eye and notified CPS with a physical abuse allegation against me. She did this without EVER seeing the documentation on the injury or the injury itself!
Since the injury happened at school, CPS investigated there and reminded them that they are mandatory reports and should have reported the incident the day it happened. School has taken that to a whole new level now. Remember the easy bruising side effect of the diet??? Well now anytime Joshua gets a scratch, cut, or bruise, school calls CPS and there is a school nurse who actually believes Joshua is being physically abused and/or neglected.
We are now up to 4 CPS referrals against me. Number 5 the state sends a board of people in to decide whether Joshua stays in the home or gets moved to foster care.
#1 was the result of the black eye that happened at school.
#2 was a fractured arm that happened as a result of his range of motion exercises in Nov 2009. We do not know when this injury happened. We know that he got his H1N1 shot in his left arm on a Thursday. Friday he winced when our night nurse did range of motion on that shoulder. He seemed fine all day Saturday and woke up Sunday morning with his entire arm swollen. Because of the swelling we took him in and the fracture was discovered. If it broke Friday night, he only winced and didn't cry. He didn't cry and was happy and laughing all day Saturday. If not for the swelling on Sunday, he may very well still have a broken arm and we not know it.
Because of his previous hip fracture and this broken humerus (the large bone in the upper arm), Joshua was diagnosed with Osteopenia. His bones are very brittle and thin because he is non weight bearing. At almost 10 yrs old (Feb 2010), his humerus is about the diameter of my little finger. This medical condition is similar to osteoporosis that older folks get.
#3 was lacerations in his genital area. These were discovered during a diaper change on a Sunday night as soon as we got home from picking Joshua up from his weekend visitation with his mom. As always the 1st thing we do when we get him home is a full body check and diaper change. I called our CPS case worker to let he know 1st thing Monday morning what we found and when we found it. As I suspected would happen, school called it in as a referral against me.
Unfortunately due to some bad timing when school called it in our case worker was in court so her supervisor, who hadn't talked to her, took the call and had Joshua placed in protective custody because this was possible "sexual" abuse. I got a phone call at 3 PM and was told that Joshua was being transported via ambulance from School to the hospital. Knowing that he needed fed at 4 (seizure control) I questioned that decision and they told me I could meet Joshua at the hospital.
While there, the Dr in ER decided the lacerations were due to skin break down caused by a fungal infection and not sexual abuse. Our case worker got pulled out of court and met me at the hospital. She was livid and had Joshua taken out of protective custody. She believes that placing Joshua in protective custody is actually child endangerment because there is not a foster home in the state that has the medical equipment, knowledge, or ability to manage his diet (seizure control) and provide the level of care Joshua requires.
#4 was the result of a reoccurrence of the exact same laceration opening back up and bleeding, a scratch on his chin caused by the HME that covers his trach, and a bruise on his thigh caused by holding that leg down while cleaning the laceration up.
Good news is that CPS is actually on my side. They are highly impressed with the skill and level of care Joshua receives from me and amount and quality of documentation that we have to back up all his "injuries" and diagnosis. We actually had a care conference and included all the school staff, the CPS case worker (and her supervisor), home nursing staffs from both the Seattle office (they provide the nursing when he is there for visitation), and my home health nursing staff. That conference seems to have helped a lot as we have so far avoided that 5th CPS referral. Sadly I do have to call CPS for just about every scrape or bruise Joshua gets and give them a heads up so that another case is not opened against me for them.
Thankfully 2010 was a much quieter and calmer year for us. The biggest issues we have had to deal with are a 28 hour power outage just before Thanksgiving, a reoccurrence of the broken left humerus (though in a different location) and a fractured right clavicle. We discovered the clavicle issue when we noticed a lump in his right chest area. Initially we though his port-a-cath had moved. X-rays showed that the cath was still in place and the lump was actually new bone growth from a healing fracture. The good news is since the clavicle is the 4th fracture, orthopedic clinic has FINALLY referred us to the metabolic bone clinic and an endocrinologist for bone density scans and seeing if there is something medically we can do.
- Shared by his father, Christopher