Everyone keeps asking me if I am sleeping because Braeden has had some quiet days back to back...the problem is that they have been too quiet and I get nervous. It is the quiet before the storm with him, always.
Braeden had a busy morning yesterday with tests and assessments and such so I didn't get a chance to hold him till after noon. I hadn't held him the day before because he took a really long time to settle after a short (hour long) hold on Tues. I was singing 'Silent Night' to him because it was the only song that came to mind (not surprising given the time of year) and I heard singing in the back ground. Now the NICU is supposed to be a quiet, sanctuary place so it was certainly out of place. The NICU however is attached (all one ward) with the PICU (paediatrics) and they had a choir come through and sing three songs. It was actually quite peaceful and beautiful and I sang along to B whilst (yep, whilst) the tears ran down my face. I struggle with this time of year every year, it is just too much crammed into such a short space (especially with Mike, Mine and T's Birthdays on top of each other), and it is always seemingly a let down in January. It's gotten 'better' with kids because you thrive off their energy but it is still seemingly a downer. It will be a 'different' Christmas this year but I think that the fact that Braeden is with us is what makes it special.
I digress, back to the holding. It was while I was holding Braeden that I started playing with his toes on his right foot looking for a reaction. He hasn't been very reactionary to me the last few days so I was looking to see if he would open an eye. I got very little response from him, not really a twitch of toes that one would expect when one tickles one foot. I switched back and forth from the right to the left and certainly got a better response on the left than the right. It was then I noticed that Braeden's left arm was moving a bit. I didn't pay it too much mind right away till it happened again and it triggered my brain that he was in fact having a seizure. It was the exact 'pumping' movement the the Neurologist had shown me. I called for a Dr and the Resident came in just as he started it again. She put her hand over his to stop the movement and sure enough she could still feel it pulsing under her hand (you can't stop a seizure by holding someone). So again the tears started running because this is when he decided to desat (which means his oxygen and pressures drop dramatically) and turn blue in my lap. It is not easy to get a baby back into his bed to work on him when he is attached to many wires and a ventilator...The RT got things back on track by pumping up his oxygen as I held my breath. We got him back into bed and his sats came back up slowly. They gave him a secondary medication that is supposed to stop seizures (as he is already on the phenol barb which should be doing just that) and he passed out essentially. He was having to work a great deal to breathe (even on the vent) and they figured since they were trying to wean down his settings that they had also partially collapsed a lung again...great.
An EEG was ordered STAT and an Xray to check for vent tube placement. The Cardiologist (our lovely Dr. Fruitman) walked in the midst of this and I panicked a bit more as he'd just had an echocardiogram done as well. She, Dr. Fruitman, wasn't the scheduled Cardio on but saw his echo and came down to tell me personally that the heart looked good. Phew! Good timing on her part (as usual), she and the Neonatologist stayed and made me laugh a bit while they hooked him up. Did I mention we've got GREAT Dr's?? The EEG takes a looong time to set up an then an hour to run the test after getting all of those electrodes attached. I stepped out for a breath of air (and to stop shaking) and went for a walk. I was sitting in the other end of the hospital when I ran into his Neurologist and she stopped to talk with me. I explained the seizures (which she already knew of course, it is a hospital after all) and she listened to my concerns with the left foot. She agreed that it was concerning and would come see me directly after reading the EEG. She explained that yes, the foot reaction (or lack thereof) could have been the start to the seizure. She also explained that it is concerning to have a few quiet days and then to start with the seizures again, especially when he is already medicated for them. I asked her if we could please up the MRI date as it was scheduled for next week and she responded about concern for the kidneys and I explained that they had been consistently out putting.
When she came to see me in B's room she explained that the EEG looked good, and showed that he was prone to seizures, not surprise there. She did say the lovely thing is that his maturity of the brain looks good for his age, that was a piece of good news. It doesn't guarantee anything but it certainly helps my mental health!! She agreed that we should move up the MRI to recheck the stroke areas and to see if there has been more activity. We opted to use the contrast dye this time so we can have a good look at the major artery and vein in the brain. She said if she was seriously concerned she would have ordered a CT last night but she was concerned enough to want to view the slides today, not Monday.
So that is where we are at, waiting (not so patiently) for the MRI to happen, be interpreted and relayed. It is a huge ordeal to get them into an MRI as well so I am certainly glad it is happening today, not after the weekend. I am so concerned about the results that I have a non-stop sick feeling in my stomach, but am trying to remain positive (?) that we'll only see the 'old' strokes.
Merry Christmas? We'll see.