Arrival – 0935
We got an early start to our morning due to expected travel time to Children’s in Washington from the Ronald McDonald House in Northern Virginia west of Falls Church. We wanted to give Alexander his medicines and a drink of water or apple juice. Alexander seemed OK with that plan…that is until he figured out that his milk tasted just a little bit funny and a lot like water! He wasn’t thrilled with the offering but he did drink a fair amount of liquid.
We left the house at 0820 and decided on an approach from the northwest through Rock Creek Park. We were expected at the hospital for the first of what would be many instances of hurry up and wait at 0930 and we made it into the parking deck on time. We lucked out that it was a holiday weekend and most of Washington seemed to be somewhere else.
Vitals/briefings – 1030
If you spend any amount of time round a hospital, you learn very quickly that they thrive on paper. One can imagine huge swathes of Amazonian rain forest that are cut to feed the voracious appetite of the modern American healthcare system. Goodness knows that the copy of his charts from his last stay at Children’s weighed at least five pounds…of which only two or three pages were deemed relevant by the pediatrician. 🙂 You get shuffled from window to booth and back again for more contributions to the pile but it is what it is.
Alexander decided to make his own political statement about what he thought about having to wait in his unique aromatic way. Now imagine this…we’re in a hospital that is (theoretically) devoted to the care of children. You would think that every wash room would be child-friendly with a changing area. You could think that but in point of fact you would actually be quite wrong. The wash room with an actual changing table is a bit of a hike and amazingly, the table doesn’t actually have any safety straps.
Anywho, the biological emergency was taken care of and we got to the room where they took his vitals at 1030. His vitals and labs seemed to be OK so after another hour of mostly waiting (and another biological situation but at least we had the biohazard bin in this room…I feel for the janitor that finds the other one!), we were ushered into a secured play room to wait some more. (Can you tell we love waiting?) Fortunately, this wait was pretty short as the anaesthesia team and Dr Bruce came by pretty quickly to get the process rolling.
Anaesthesia – 1200 (+00:00)
Induction with the gas mask started right about noon and he was quickly under in about two or three minutes. That was rather surprising (at least to Daddy who had never seen this in real life). I mean, on TV you see them go under pretty much instantaneously so as not to take away from advertisement time. But it was amazing to see him go from one moment of being bright-eyed and bushy-tailed to completely out and ready to roll to the operating room. At this point, you don’t get much time to say goodbye.
Note for the future: take care of that before they start passing gas!
IVs/arterial lines in, first incision – 1313 (+01:13)
We got our first update at 1313 hours (+01:13) indicating that all of the IV and arterial lines were in place on the left side (so he can still use his right hand, something we were very insistent upon because to expect the poor boy to have no use of hands for two weeks is just not very nice at all). At this point, the surgery has actually begun and the first incision made and all signs are looking good right now. Once the update was had, it was time to run for one of Mommy’s special coffee and what do we have over here in the library but network access…so a couple of updates went out that way as well.
Still cutting to affected area (all is well) – 1515 (+03:15)
Our second update at 1515 hours (+03:15) reported Alexander doing very well and Dr Bruce is proceeding slowly and carefully to the affected area. None of the grids have been laid as of this update. The next update is expected at 1730 hours (+05:30).
First mapping complete, hot area identified for resection then second mapping to determine feasibility of additional monitoring (transfusion given) – 1635 (+04:35)
We actually got an interim update from Dr Gaillard at 1635 hours (+04:35). He’s the neurologist assigned to Alexander’s case and he indicated that the first mapping of the brain was completed and had indicated an electrically hot area in the frontal lobe to the side and down in the area that was resected (removed) in the first surgery. Dr Bruce has decided to go ahead and resect that area straightaway which should take an hour or so and then a second mapping will be made to help make the decision as to whether the grids will stay in for further monitoring or if they’ll declare victory and pull the grids out, seal him up, and then send him home next week. We expect that they will err on the side of caution but if the right decision long-term is to go ahead and just do the one surgery, then we’re perfectly fine with that. He is still doing very well and has received one transfusion for blood loss (as explained to us, because of the previous surgery and the need to be careful, blood loss was expected and we had already consented to the transfusion. Another piece of welcome news: the posterior area near the motor strips is showing to be clear of electrical activity so he should not lose any additional motor function due to this surgery.
Second mapping complete and pretty clean, decision to pull the grids and just do the one surgery, approximately ninety minutes to seeing Dr Bruce. Some temporary additional weakness on the left side can be expected but it’s expected to resolve fairly quickly after the surgery. – 1825 (+06:25)
We just got another update from Dr Gaillard at 1825 (+06:25) and he indicated that the second mapping was complete and was looking very clean. The decision has been made to remove the grids and close him up which will take another hour to a hour-and-a-half before Dr Bruce comes out to talk with us about the surgery. Both Dr Gaillard and Dr Bruce feel that pulling the grids is the best and least risky decision for Alexander as they had removed the very active tissue and nothing else was indicating a need for further monitoring. He will be going to PICU until probably Sunday when he is expected to be transferred out to the floor. The expectation is for swelling and potentially some additional weakness on the left side (particularly in the facial area) which should be temporary and should resolve quickly when the left side of the brain takes over the function (I think the term that Dr Gaillard used was that the brain was very well differentiated in this area). All-in-all, Alexander is doing quite well and both Dr Gaillard and Dr Bruce are very pleased with how the surgery has gone so far.
Surgery complete – 1958 (+07:58:58)
Dr Bruce came out to talk to us after the surgery was complete at 1958 hours. Overall, he was very pleased with how the surgery went and was very happy that he saw exactly what he was hoping to see. He took out a fair amount of obviously dysplastic tissue in the area of the insula (sp?) on the frontal lobe to the side and down from the original site. He also took another strip of dysplastic tissue along the top edge. What took this surgery longer than the other was that the tissue was more sticky (for lack of a better term) than the first time and the need to be very careful. Alexander did receive 200cc in the operating room as a result of fluid loss (and we would find out later that he is blood type B-positive (B+) which was a bit of a surprise to us).
The expectations going forward are that he will have temporary weakness on the left side (particularly in the facial area) but that it should resolve over the next couple of weeks and that hopefully we shouldn’t have to do any additional surgery.
Recovery in the PICU – 2030
We then took off for the third floor PICU in order to catch him before he went into the PICU and would be unavailable while they set up his area with the ventilator and IV pumps. This was an appointment we did not want to miss because the PICU has long lock-out periods and we had no intention of sitting in the waiting room for a couple of more hours without seeing him for ourselves. That has nothing to do with trust and everything to do with getting relief from an extremely stressful day that he looks OK.
I mean, let’s think about that for a minute. This morning before we left Virginia, we had a very beautiful baby with a wonderful smile who was flirting with every female he could see and at the end of the day, Alexander had someone who had cut into his brain and removed a fair bit of it and was laid out like someone had poleaxed the poor boy with all sorts of tubes poking out of him and a manual ventilator bag! That’s a heck of a day by anyone’s standard, I should think! And whilst he’s going through all of that, you’re on the sidelines knowing that it is the right decision to take for the surgery and that there really isn’t anything else to do but wait anxiously for any word that your boy is doing well and will be fine at the end of the day. All sorts of conflicting emotions are going on in your head…trust in Dr Bruce and his team’s skills, faith and hope that all will go well, anxiety at when the next update from the operating room comes and what it will have to say, to finally being so keyed up waiting for the end of the surgery so that you can release the tension.
Honestly, I wouldn’t wish that on my worst enemy. And we’ve done it twice…
Anyway…his gurney came off the elevator and we did make a successful interception before he was wheeled into PICU (with his ventilator and IV pumps coming in right on his heels). He was on a ventilator after surgery and the plan was that the tube would be removed either later tonight or early tomorrow depending on how well he responded to breathing on his own. Overall, he looked very pale (almost as pale as Very Pale Dan from this season’s Survivor) and that spoke to his counts being low due to the fluid loss in surgery. But he looked pretty clean and strong and it was good to see him before we had to sit on our hands some more.
Thirty anxious minutes later, we were by his side in the PICU. Overall, he was still doing pretty well and was starting to wake up from the sedatives. He was obviously in some pain (one might well say he easily had a splitting headache!) which was perfectly understandable. Alexander was also contending with six teeth coming at the same time as well as the surgery. The fact that he wasn’t climbing the walls was a miracle!
A word about that pain, if I may. Watching him dealing with both the after-effects of the surgery and the teething is the sort of pain that you honestly wish you could do anything to save him from feeling. And I mean anything because it just kills you to see him endure it for such an extended time. It just seems monstrously unfair that such a beautiful boy has had to endure such awful things in his fourteen months. And it is!!! But you can either let that beat the heck out of you mentally or you can realize that there is a flip side to that coin… that you’re looking at the closest thing to pure courage that you can ever find in this life. Granted, there really wasn’t much of a choice on his part…it was either have the surgery or have seizures for the rest of his life and that was a pretty easy call for us to make. But it’s a tough thing to realize that this beautiful fourteen month-old boy lying there in such pain probably more knows more of what it means to be courageous than any of the rest of us ever will.
He was breathing well enough on his own that they started the extubation process by dropping the oxygen content of his ventilator down to room air to see how he would handle it. He did so well that all he was getting was a slight bit of oxygen (1L for all of you medical types out there) but he was doing most of the work on his own.
Ventilator tube removed – 2255
After about ninety minutes at bedside, it was time to head out for some gourmet food from Chez McDonald’s. Frankly, it could have been mud and we wouldn’t have cared at that point. During dinner, we were informed that the tube came out at 2255 hours and that he only had the nasal canula with the 1L of oxygen (we wouldn’t have been allowed at bedside when the tube came out so it was just as well it happened then).
Another hour of so at bedside to see him get comfortable and then it was time for two very exhausted parents to head back to the Ronald McDonald House for some very needed sleep. And even flying on autopilot, Daddy managed to take the correct turn to give the Memorial Bridge and Abe’s Place a bit of a miss. The third time is indeed the charm!
