Preparing for P.J's Second Resection
Since moving to Washington we have seen a couple of different specialists for P.J. In January we switched to Dr.Novotny and Seattle Children's Hospital. Once meeting him in February we were very pleased that he began scheduling Paul's appointments to try and see what was going on as his physical seizures had been increasing in amount and intensity. It was a great relief to have the support from him! We underwent a three day EMU (Epilepsy Monitoring Unit) stay, where he was thought to only have a two seizures at the time. He underwent an MRI, PET scan, and FMRI all within about two and a half to three months.
After all the tests were completed we met Dr.Ojemann. He explained things to us and showed us what he saw on PJ's images. There was an obvious blur on a bulk of the right side. He believed that to be the problem. He told us that it is a 50% chance it will/won't work and explained that if things started up again they would evaluate areas further back and remove if possible, but for now he was taking what he could tell was abnormal. I could tell upon meeting him that he was a very skilled and compassionate surgeon...I felt completely comfortable (or as comfortable as any parent could be) leaving my sons life in his hands and the hands of his team.
P.J's tonic clonic episodes began happening up to nine times a day each episode lasting up to four minutes. We were absolutely relieved to here that they surgery was being done sooner rather then later....
May 16, 2013
Surgery day. Something was so much more difficult this time around. I wanted to take him and run. He was in such good spirits for being hungry and tired...he had NO idea what was going on and in a strange way I envied him with his inability to understand it all. We had to scrub PJ with some special wipes and dress him in some hospital garb they marked his head, repeated a few times what they were going to do and handed us a pager for updates. We then went back with him for the sedation and that was the only time he got cranky---It made us pretty upset to see him that way.
Once they took him back we began our wait. We were told it would take around eight hours. My husband and I set in silence for most of the time. We found a spot in the sun and set outside calling family every once in a while and trying to find things to smile about...both of us deeply worried at how our little boy was going to come out.
While walking around the hospital, about four to five hours after the surgery began we ran into Dr. Novotny he told us they were wrapping things up and that he had done very well. He told us they took more then they planned but it was totally obvious what was not functioning for PJ. We were so relieved. He also let us know he had a clean read on the ECOG after they removed the areas in question. We met Dr.Ojemann right before meeting up with our son and he let us know that P.J was constantly firing off deep within his brain. He said that they got enough information in 5 seconds of having him monitored. This was exciting and traumatizing for us to hear. How could we not have known? How could it go this long without anyone picking up on it? Reality hit on how easily we could have lost him....and how miserable he must have been being in a constant seizing mess. We were told there was a chance that walking may be difficult as a result of the area that needed to be removed which we totally accepted.
Seeing him for the first time this time around was a little easier then the first. We were already aware of the blood transfusion and were prepared to see his wound. Thankfully his surgeon had the same spot used as before--one less scar for P.J! While being set up in the PICU he woke up and said "Owwieee" and the nurse asked if his head hurt and he said "Yeah" we missed hearing this but it put a huge smile on our faces and tears in our eyes to know he had done that.
The next three days were horrible for Paul. He threw up over and over and over. He couldn't hold food or liquids down and even when he had thrown up all his liquids he would dry heave. He would not interact with us or try to move. He would just lay in our arms. Thankfully we were both able to be there so we would switch off on holding him throughout the day and night.
Finally we had enough of him laying around. It sounds bad but seeing a two year old lay quiet and motionless was way scary for us and we wanted him moving. They had a patio on the Surgical General Care area and we found that was the key to getting Paul motivated this got him a little perkier and he started drinking and eating a bit without vomiting.
Around this time at night Paul had a "possible" seizure. It did not look like his typical seizure and we were told that he could have seizures up to a couple of weeks after surgery due to healing and not necessarily relating to the dysplasia. Still scary though....we were constantly on watch after that but had not seen any more "episodes". Paul still lacked motivation even with the little perk ups from being outside. He would not move unless we pretty much forced him up. He had very little head support and could not set up very well unassisted. This was about five days post surgery and they expected him to be doing a little more then he was. The rehab unit came in to evaluate him and the agreed that he should spend some time over there.
Once we got admitted into the rehab unit P.J decided it was time to start trying to move a bit....funny how that worked out! My husband was a little excited because the Seattle Seahawks frequently visit the rehab unit on Tuesdays but it was like P.J picked up on his excitement and was like "Yeah right Dad, I'm getting us outta here!" Of course! Haha.
We had his brother and sister over for a visit the next day and he did a complete turn around. He was back to the way he was before the surgery except you could see so much more focus in his eyes! We spent a total of eight days in the hospital before we were given the go ahead to resume life back at home. On the day we left PJ decided he was going to sleep until nine in the morning. He was seeming to be more and more himself! We were so thrilled to get back to life at home with all of us together again!
Things We've Noticed....
Since surgery we have seen a drastic increase in PJ's speech both expressively and cognitively. He is far far far more focused and together. Paul has began putting two words together and correlating sign language with a couple of words. He understands the difference between his nose and daddy's nose (for example). He is beginning to understand animals and sounds...For example he pointed at a snake in his animal book and said "Ssssss" he also has started pointing at dogs (not just Boo, his dog) and saying "woof woof". Really really cool for PJ :) We truely thought his balance issues were due to his first surgery and his weak leg. Since the surgery his balance has increased substantially. He is now able to walk straight and point at things more accurately. Now that we know he was living with a constant disruption of seizures it is thought that could have been the cause of a lot of those problems. The only deficit that we can see is weakness in his face on the left side and some right sided dominance...he sometimes "forgets" that he has a left arm. They did notice his Apraxia seemed to be pretty bad in the beginning...I think it has gotten a little better but only time will really tell with that. We were told to go ahead and get an orthotic for his left ankle for times where we are doing a lot of physical activity with people around (like outings to the zoo or fairs---places like that). He left the hospital on all the same medications that he went with---they did not tack Dilantin back on...thank Goodness....that med did a number on his teeth! P.J is also now in a research study to try and figure out more about these abnormalities. We are hoping to learn as much as we can about P.J's disorder, especially since one day we would love to make Paul a big brother if we are able.
Now is the real hard part----waiting and hoping that we don't have to send our little boy in for a third time around. In a few months he will have an EEG--we are crossing our fingers that he will have his first clean reading!!