Here we are a month later, back in NYC and I cannot sleep. I haven't slept well in days, racking my brain trying to put Zachs puzzle together in my head to no prevail. To update everyone, we had a summer full of answers... still some more to follow I hope.
Obstructive Sleep Apnea and Elevated INR/Clotting Issues and Neurology
In July, we found out that Zach has moderate to severe Obstructive Sleep Apnea (OSA) and he has been put on a CPAP machine to help him sleep. We were unable to have his tonsils and adenoids out because his blood is not clotting enough and he could bleed out during or after surgery... the surgeon wanted us to get through diagnosis phase and then see hematology for a full work up to determine his clotting issues. The CPAP has made a huge difference in Zachs behavior and focus and should be helpful to him during the school day as well. He is still fatigued but was not falling asleep everyday in the afternoon and on every car ride. However, the CPAP mask has caused Zachs morphea lesions on his head to become active again and we are trying to figure out how to prevent this. We then visited hematology and they determined that Zach's Factor 7 is bottom line on normal with no room to play around but is safe to have surgery as long as they prep fresh frozen plasma for a possible transfusion in case it is needed if his Factor 7 becomes deficient. Normal range is 51-171 and Zach is borderline at 50. The hematologist felt that this is what caused Zach's INR to elevate. We have now scheduled surgery for December 8th, Brian's birthday, and pray that all will be successful and transfusion free.
Also, 3rd night on the CPAP, Zach experienced what appeared to be the first of 6 seizures... all overnight. There could have been more and this could have happened before, we just may have been unaware. We went back to neurology for another consultation and they scheduled Zach for another EEG... I have to attempt to wake Zach during one of these episodes. If he wakes, we are dealing with a different kind of sleep disorder, if he doesn't wake, we are dealing with seizures.
I mentioned this to the Sleep Medicine Doctors when I went to his Titration Sleep Study results the next day and they noted that Zach's OSA is 100% under control with the CPAP, however, his arousals during sleep have almost tripled up to 289 arousals in a 10 hour sleep period. The number of arousals was quite alarming without the breathing issues. They have now contacted a different Neurologist who specializes in Sleep Disorders and Nocturnal Epilepsy. We are awaiting the call from this specialist for further instructions. Zach is still not getting the quality sleep he needs, even though the CPAP is doing its job. I will update when we find out what the 2nd Neurologist determines the route we will take.
Exercise Induced & Nocturnal Asthma/Allergist
In mid-July, we also visited the Allergist/Immunologist where we found out that Zachs chest pain was due to untreated Asthma-exercise -induced/nocturnal asthma to be exact! He is now on 2 inhalers, one he does twice per day and the other we use for emergency when the chest pain hits. It appeared to be helping and I was confident this would help at school that I will receieve less phone calls to pick him up since he will have his inhaler there for his chest pain...until recent events this week. He began severe chest pain on Monday that would not subside with inhalers and nebulizer treatments. The pediatrician was convinced at that time that being his lungs were clear, we were dealing with joint inflammation issues in his chest. No way to comfort him. I now question the Asthma diagnosis with the recent events. Prior to the Allergist, we headed into the Cardiologist the first week in July for an EKG and an Echocardiogram. We received a beautiful picture of Zach's perfect heart and he was proud to share with everyone. To have his heart ruled out as nothing to do with his chest pain made me very happy.
GI
We visited with GI this week as well and they put Zach on Prilosec, not for GERD, but for preventitive measures... to protect his stomach from ulcers from his pain meds. They also incerased his Miralax again and could not give us any other answers about his constant stomach pain. Though, GI and the pediatrician agrees that the chest and stomach pain go hand in hand.
Rheumatology/ Arthritis and Arthralgias
In June, we visited Dr. Lehman, a renowned Rheumatologist, in NYC. Dr. Lehman weaned Zach off of all of his meds over the summer to "peel the onion" and see what was side effects vs. symptoms to properly diagnose Zach. We returned at the end of August to find out that he believed Zach has some form of Arthritis but wanted to keep Zach off of treatment until he got through surgery and he encouraged us to head in to hematology to get to the bottom of Zachs elevated INR and get Zachs surgery scheduled ASAP.
Here we are, a month later, and I am sitting in a hotel room in NYC watching my son peacefully sleeping while I listen to the rhythm of his breathing from his CPAP. I watch my twin daughters passed out next to him and I pray to God that Dr. Lehman can help our son tomorrow. I know treatment is questionable due to surgery scheduled but there are options and there is always the possibility of postponing his surgery since we seem to have success with his CPAP. But treatment will take a while to kick in... I pray that he can provide immediate relief to his pain. His mobic isn't even touching this.
His pain began last Sunday early evening and has barely let up... we have gone through periods of him being able to hop and skip and having low pain levels of 3/4 and look like he is fine to hopping on one leg, limping and crying in pain. The pain began in the right foot... by Monday, it spread up to the middle of the right knee and down to the toes and into his chest (right side and then base). He woke me up in the middle of the night mid-week with a throbbing pain in his arm on the left side and tonight at dinner, he began to experience pain in his left leg and Brian had to carry him to the van and then up to our hotel room. He has shared with me that he always hurts and wants it to stop... when I asked him how often the pain stops, he shared that it never goes away. So now, we have the left and the right legs bothering him. His hands are like putty and he can barely grasp my hand. The few days of school he attended this week, he made it through 2 hours max!
It is hard to explain Zach to the outside world... school, friends, extended family... he looks like a normal kid running around and smiling. What people don't see is his pain episodes, his dark moments that we see. Zach is very good at concealing his pain to the outside world due to his embarassment of it! I have learned so much from this journey with Zach. I will never judge someone again, I will never question someone who hurts or shares they are sick but looks like you and me- the overweight lady who may be blown up due to a medical condition or from medical steroid shots for pain, the co-worker who may call out sick and always seem fatigued, someone who is home on disability but looks fine enough to be out there in the workforce. So many people say..."But he doesn't look sick"- this is the worst thing to say to a sick person. Ask yourself, What does a sick person look like? Is it someone who is in a wheelchair? Missing a limb? Someone with a noticeable deformity? Someone who has to use medical devices? The next time you ask yourself that, take a look at Zach's picture... that is what a sick person looks like, a sick person with an illness that is invisible to you and me... what can make it tangible to us?
