Logan has never been "described" before… or have they? *Please read

I need your help. My son died February 19th. He was seven months old.
I’m very bitter because we have no diagnosis and nothing has ever been described like Logan before… until I read about GBS! Now I’m not a doctor and have only a fraction of their knowledge. I have mentioned GBS to a neonatologist before and it was blown off. I could be onto something or I might not?
Here are is a small amount of information:

Discharge diagnoses:

Term newborn now day of life 193 with a PCA of 66 weeks
Chronic hyponatremia, etiology unknown (Chronic SIADH)
Failure to thrive
Hypotonia
Abnormal magnetic resonance imaging and spectroscopy
Intermittent urinary retention, unknown etiology
Right ventricular hypertrophy (likely from being ventilated too long)
Hypertension
Minimal posterior subluxation of hips (Probably from being low tone)
Gastric dysmotility
Scoliosis (Like due to low tone)
Elevated liver function tests
Eczema
Rule out mitochondrial disorder (which from my understand has been ruled out since the discharge)

from my delivery, I had prolonged ruptured membranes. I was admitted at term with a fever. As soon as they hooked me to the monitor Logan’s heart-rate was in distress. He stabilized and they delivered me via c-section the following morning. Once he was delivered he went into respiratory distress and was dx w/ PPHN. Everything went downhill after that.

He has an abnormal MRI. He’s had four and the last MRI showed white matter volume loss. Could be degenerative or could of been the 10 minute code he had the month prior. Now I am merely speculating.
He never got better in fact he got worse. But so much of his picture fits this disease. If its not GBS is there a known gene that causes GBS? are there known mutations? Are there chronic cases where the patient does not recover? No one has seen chronic SIADH in a newborn before. I’ve searched far and wide.
We never had an EMG done. No doctor was willing to perform the procedure on a baby as small as Logan.
Do you have any suggestions? Does any of this sound familiar? Should I contact my geneticist? (which is in itself an act of god, bless his heart)
Please go to his blog: logansworld.blog.com you can see further details from his discharge summary and hundreds of pictures.

I will list my notes of our whole ordeal:
0-1 Month: Went into respiratory distress shortly after birth, requiring 5 days of incubation. Dx PPHN

No urination after birth, required catheter. Once catheter was removed Logan was able to urinate on his own.

Once extubated, Logan was examined, noted as hypotonic. Wrists also were bent in and left foot extended down. Severe hyponatrimia began. He was loaded his tons of sodium in his IV fluid. At this time we were trying breastfeeding only and was unsuccessful. Temperature unstable, Hyperthermia, sweating the bed. Lots of sweat. Tastes salty. Weird rash? Possible yeast? Cleared up with ointment. Diarrhea and bowel distention when feeds were fortified. Weird twitching episodes followed by cries of pain. I highly suspect seizure’s, however it was never confirmed thru EEG. BP was on the rise but did not require meds.

HR and RR was always high. Logan was O2 dependant and was on NC 1/4 liter.

Month 1-2: Logan was trans to ACH NICU to be seen by special doctors. There progress was slow.Logan developed a blood infection from his PICC line. Requiring 10 days of ventilation. He was loaded of pehnobarb for possible seizure’s. This seemed to sedate him a lot. Bottle feeds began with success. Sometimes had some problems but overall looked good. Most were shocked Logan had enough energy to eat since he was so hypotonic and non-interactive.

Logan was seen by a dozen different Dr’s. All had idea’s but everything was a dead end. We began to worry about his vacant expression and rolling eyes. His BP was so high during his intubation he required about 10 days of a NiPride drip. Then he required constant BP meds. Hyperthermia continued. Tastes salty.

Month 2-3: Logan was still being loaded with excess sodium. Twitchy movements started to come more often. In fact almost all of the time. He over reacted to sounds,especially that of the slamming trash can lid. I began to worry that it is too late and the process of degeneration has begun. Hyperthermia continued. Tongue thrusting was noticed. Could be because of chronic thrush? Smelly Urine.

Month 3-4: Logan’s hair started to fall out by the slightest touch. He developed scaly yellow skin on his scalp. When I tried to remove it the hair came with it. He was treated for thrush however, it never went away. The twitching seemed to of had a peek and is now becoming less noticeable. He also does not respond to sound as dramatically as he used to. Bottle feeding was not going as well. Logan also was not urinating like he should. Lasiks was started to normalize his sodium however his bladder did not handle the load it had to carry. Massage and sometimes catheters were used to help him void.

Low gut motility was a big problem. Logan was not gaining weight. Logan had not met any milestones. Hyperthermia continued. Urine is very smelly.
Possible UTI?

Month 4-5: We used to be able to hold Logan in any position. Now Logan can no longer maintain his airway with his head midline. This requires us to keep his head turned to the left and in an upward angle. We got his Mic-key button for tube feeds, however removing him from the vent turned out to be a long process. He was intubated off and on for a month. Though the reasons were not quite clear. Hair was still falling out leaving obvious traces on his bed. note: his nails also grew at an abnormally slow rate

Logan seems to be showing interest in certain toys and certain people. He had begun to smile a little. (very little) Hyperthermia continued. Logan was showing less interests in adjusting himself into comfortable positions. However, I discovered Logan can very briefly maintain eye contact with simple pictures. Smelly Urine cont.

Month 5-6: We spent this time working out his feeds and a plan for home. Logan was able to handle breastmilk w/ pregestimil to 28 cal. Constant diarrhea a w/ boweldistention.

He was extubated and doing well. However he had some desats when he would get upset and have jerky movements. His heart rate did not change during those episodes. Hyperthermia continued. Massage was almost always necessary for urination. He had hand and foot splints, by this point they helped tremendously. He no longer clutched his wrists but would sometimes bend themin. Smelly urine cont.

Month 6-7: Logan came home. Oral feedings were stopped due to possible aspiration. Continued NNBFing with some success. Constant diarrhea. During the time he was home he went from some hair to almost NO hair and the hair he had was very blonde. He reached the12lb mark. (started from 7.10 at birth) His airway became increasingly sensitive. He was extremely hard to hold. He started to sleep most of the time and his breaths were diminished. His gut motility seemed to slow. The twitching movements came back but did not look involuntary rather looked more seizure like. Hyperthermia continued. I took Logan to the ER and the doctor trying to find a reason why he wasn’t breathing like normal. They had no answers,as they did not understand what Normal was for us. I feared the worse,knowing the likely outcome. Logan coded on the morning of 2/12 and he died on 2/19.

Thank you so much for your time.