That's the song by Tenth Ave North that was playing on the radio at 5:15 am as Mason and I headed to the hospital for his repeat MRI, (mainly to determine the status of his tethered spinal cord so the neurosurgeons could schedule his surgery sometime in August). It felt like God was whispering those words straight to my heart, and I prayed that it could be true for our guy ... I can just imagine the sparks flying as His grace comes crashing in :)
Mason was cheerful all the way to the OR by 7:30 am, giggling his cute little way down the hall with the nurses. The rest of the day was long and hard...the best part of it all is that they were able to sedate him with gas before they tried to get an IV going, and intubation. They put in a catheter too to do a test when he woke up to see how his nerve function/spinal cord was performing. When he came back (3 hours later) to recovery, at first glance he was doing well...
But then it became clear that he was getting another roaring case of stridor from the intubation, so he was wheezing and honking like an awful case of croup. He really started crying in distress after about 15 minutes in recovery. (We told them in advance - several days actually - that he was a tough intubation and they promised to use a special device to make it less traumatic but clearly it was still pretty rough for his lungs.) They tried 2 albuterol treatments with no help and he was so miserable with sore throat and lungs that he was mostly inconsolable the rest of the day. Finally a dose of Decadron (sp?) steroids and Tylenol brought him to a more comfortable level and he was able to get a little sleep before his test.
The IV on his arm was really bugging him too...the one that took no less than 15 (should I spell that..FIFTEEN holes all over his body to get in him???) His ankles and arms look like he got into hornets :( I had also asked the anesthesiologist to use the ultrasound guide to find a spot faster like last time...clearly he ignored that bit and chose instead to use Mason as a pincushion. Sigh. So note to self....(a note that has already been added to his Plan of Care at the hospital since it apparently carries more weight than mom's pleading) ...ALWAYS use ultrasound guidance for Mason getting IVs and labs...and ALWAYS use preventive Decadron/and or Tylenol when he's still in the OR to try to head off the stridor (takes a good five days to resolve once it hits). Anyway, the stridor so bad they wouldn't let us leave and kept having the doc come in to re-check him before he was allowed to be discharged for his test. That took another very distressing hour and we had to go back to the surgery area to be checked again. We were double rooming with a poor little guy getting his tonsils out and he was in bad shape too...couldn't stop throwing up :( Finally around 4 pm we got the all-clear and finally were able to get a proper meal in him around 5:30 that night. The next day Mason started feeling even worse, but his stridor was a little improved...seemed like another UTI with soaked diapers/bed, not sleeping, fever, diarrhea, etc. The catheter probably helped it along :( The test at the ped's office came back positive but they weren't convinced it was "real" vs. contamination so we are waiting for the full culture results before having to add another antibiotic to the regime. That is a current prayer request...antibiotics just make the UTI trouble worse in the future, and his eating/tummy issues worse while he's on them. We're hoping he gets better without all that!
In the meantime we didn't have to wait long for the MRI results...which were a HUGE and WONDERFUL suprise!!
The next day we found out his tethered spinal cord is... NOT TETHERED ANYMORE!! Meaning, where the cord was originally adhered to his spinal column as a newborn and they were worried it was stretching/pulling as he grew and would need to be freed surgically to avoid nerve damage - it wasn't just
not tethered, they said it now appears NORMAL!!! :D (previously it was also too long and had an abnormal fatty area at the bottom. SO NO SURGERY!! And no laying on his tummy 96 hrs sedated with a ventilator!!! No repeat cath test after the surgery because there will be NO surgery!! WHOOO HOOO!! Hmm... I wonder Who could've had a hand in all that? There's that music again... "This is where the healing starts..." !!
It gets better :) As for his brain, he does NOT have a Chiari Malformation. :) So no decompression surgery either!! DOUBLE YAY! He does still have Dandy-Walker Variant. No action to take there. He does have new lateral ventricle swelling in his brain but the neuro assured us, it's NOT fluid :D So no shunt surgery needed!! TRIPLE YAY!!! And his brain growth is slowed which we kind of expected. And the missing/undeveloped area of his brain is the part controlling, in part, his trunk and that's the reason for his profound hypotonia especially upper body. She thinks with good PT he'll be able to overcome it, in his own time :D QUADRUPLE YAY!!
The only thing we're still unclear on is if he has "Molar Tooth Sign" (a symptom of one group of syndromes, COACH/Joubert-related syndromes) - we sent a question to the radiologist about it through the anesthesiologist since genetics had wanted us to ask them to rule that out, but I guess he didn't pass that on.
In other good news, Mason is getting glasses! He won't get a huge benefit from them visually but it should help some nearsightedness/astigmatism and anything is better than nothing when it comes to sight :) It should also help protect his good eye since it's the only one he has really any vision in. And he gets some transition lenses with them too since he is so photosensitive outside... I can hardly stand how cute he is in them!
It will take about a week for them to be ready to pick up...then there will be more pics of course :D Anyway all we can say is PRAISE GOD...HE IS GOOD, ALL THE TIME :D
