Feb. 5 - Filling in Some Gaps - Part I

Yesterday was the day I originally planned to come back from maternity leave. I returned a month early, but in some ways it feels like it's been a lot longer.

While talking with some friends at work, though, I realized I never explained what all transpired the afternoon and evening that Garrett passed away. I went right from a post about waiting for him to come out from his procedure to sharing the news that he had left us -- and although there weren't many hours in between, those were probably the longest hours of my life. So for those who haven't heard the full story already, here goes. (I should qualify this with a disclaimer that I'm relaying the way I remember it. I might be off with exact sequence and medical details, but my mind was lost in trying to comprehend the reality we were facing, so some ambiguity is probably to be expected.)

So on the morning of December 11th, after shifting a sleeping Garrett from my arms to those of a blond anesthesiologist (who smiled and said he'd hang onto him, versus let his female colleague carry him, because he likes babies), Chris and I headed to the cafeteria to eat a quick breakfast before venturing back to the control desk to join other families waiting for their loved ones. Signs were scattered throughout the waiting area that food and beverages were not allowed, out of respect for patients -- presumably who were fasting before their procedures.

We knew Garrett would be heading to the PICU afterward, and thought his room would be assigned early enough that we could wait there (where we could later eat lunch and where a room was available for me to pump), but it wasn't. So I updated the blog, Chris played a few games of spider solitaire, we thumbed through some National Geographic magazines and read about the fall of Mayan civilization possibly being attributed to climate change, and eventually even tried to sleep. I wouldn't say we were at ease, but for some reason, we didn't feel nearly as anxious as we had with Garrett's first two procedures. Maybe that was simply because he'd made it through those two already. Maybe it was because he'd been improving so much. Given his track record, it hardly seemed logical that he'd run into problems at this point.

So waiting this time was quite the contrast to waiting through Garrett's first round of embolizations at just four days old. At that time, we were still reeling from the shock of facing both a high-mortality condition and treatment. After all, we had only learned about them a few hours before. As we followed the team pushing his little bed through the halls to the room where they would prepare him, it felt like we were already saying goodbye. I'm sure my face was a flushed, contorted mess as I kept myself from sobbing openly. I remember passing a few women who laughed as they talked, and thinking how strange it seemed that life would be going on as normal for other people when our world had just shattered into dust and rubble around our feet.

The team transporting Garrett also had to cart along the tanks of various gases being mixed for his breathing concoction. In his room, a machine had been responsible for his breathing, but while we were en route, one of the staff had to manually squeeze an anesthesia bag instead. It seemed so wrong to watch my son's tiny chest rise and fall obediently to this stranger slowly pumping a black bag. On the trip, there were a few times that man let go of the bag to push a button to open a door or hold the elevator just long enough to get his end of the bed through. Although I knew that these were professionals and Garrett was fine (the interruptions probably lasted no more than a few seconds, after all), I couldn't help but shout mentally, "Hey, buddy, my son's life is literally in your hands! Keep your paws on that bag!"

During that first procedure, we had gone back to Garrett's PICU room to wait. Some of Chris' family began to show up, though, so we moved to join them in the waiting area. (Mayo had implemented visitor restrictions during our PICU stay to avoid the spread of the H1N1 flu virus, so only parents were allowed in pediatric patients' rooms.) A part of me didn't want to be around anyone at first, but it didn't take long at all for me to appreciate the distraction.

When Garrett's procedure was over, I was a little surprised that Dr. Cloft and Dr. Lanzino came to tell us how it went while we were still in the waiting area. But I was glad they did, so our family could hear first hand about the success. With Garrett's second procedure, we again sat with some of Chris' family in the PICU waiting area, and Drs. Cloft and Lanzino again came out to give us good news.

With Garrett's third procedure, we didn't have family waiting with us, but as I said, for some reason we weren't quite as stressed about it. Although, since Dr. Cloft had indicated it might take three or four hours, we expected to hear some news by 12:30 at the latest, so we did start wondering whether something was wrong as 1 p.m. approached. I don't think Dr. Cloft showed up until about 1:30. He explained that the procedure seemed to have gone well. As with the first two, the hardest part was getting into the femoral vein. On an adult, that step would normally take five minutes, but with Garrett it took an hour this time. He said they had to call in another doctor who had more experience, and even he had trouble.

But, like before, once they were into the vein, it was relatively easy to get up to the brain. From what they could tell, the coils had clotted over as expected and the excess blood flow had been stopped. Dr. Cloft said Garrett would have a CAT scan on the way back to the PICU to check for any bleeding, but overall, things seemed to be looking good.

The folks at the control desk said Garrett still hadn't been assigned a room, but we could head over to the PICU and probably find out where he'd be once we got there. We did just that and eagerly waited to see our little guy again. I had last nursed Garrett at 3:45 that morning, and desperately needed to pump, but I didn't want to miss his arrival.

Dr. Lanzino caught me in the hall when I was on my way back from the ladies room and explained calmly that the scan had shown some bleeding into the ventricles, so a shunt was going to be placed to relieve the pressure. He didn't seem very concerned about it, so I didn't think it was a very big deal at the time. It was a drawback, certainly, but our little guy was a fighter and had made it through so much already ... Surely this wouldn't be any different. I had wished Chris would have heard it right from Dr. Lanzino, so he could have be reassured by his demeanor, too, but Dr. Lanzino was off again.

I don't remember whether I told Chris the news when I got back to the room or whether another doctor was already there letting him know. In any case, Garrett arrived not long after that, and we were asked to leave while they took care of the shunt. It's interesting that they could do that right in the room, but given that he was in his room, it felt like he was getting settled in for recovery. Chris and I stayed by the doors in the waiting area so they'd find us quickly to let us know when we could go back in.

Eventually Dr. Lanzino came out and told us the shunt was in place. I asked whether we could go back yet, and he said we'd better wait until they were done cleaning up ... maybe twenty minutes. He had seemed as calm as he was before, so I still had the impression everything was being managed just fine.

I took advantage of those twenty minutes to finally go pump -- although I'm sure it actually took a half hour or more because I had waited so long. When I came out, I was surprised to find Chris waiting outside Garrett's room (which still had the curtain pulled closed) while quite a few people were hurrying in and out and others stood nearby, ready to act. I was deciding how to maneuver through the crowd to get to Chris when a woman asked if I was doing all right or if I needed anything. Thinking back on it now, her tone had hinted at an expectation that I wouldn't be okay, but I was still under the impression that things were going as planned. I told her I was fine -- just trying to get over to my husband.

Although I was confused as to what was taking so long, I still wasn't worried yet. Chris probably was, but I misread his silence as simply being tired of waiting all day. I don't remember whether we were told what exactly was happening at that point, but Dr. Arteaga asked us to wait in the waiting area. She'd come get us later. I think at that point I called my mom to let her know that the procedure had gone well, but they were working on a shunt to address some bleeding that followed.

I was probably rather matter-of-fact about it. Between my expectation that everything would go well and the cues I took from Dr. Lanzino, I was pitifully slow at realizing there was a real problem. When I got off the phone, Chris solemnly pointed out that it probably wasn't just a matter of there being some blood in the ventricles. With all those people rushing in and out of Garrett's room, it was clear something wasn't right. He had witnessed more of it than I had, and obviously wasn't as blinded by optimism to miss the meaning.

Eventually, Dr. Arteaga came out and asked us to step inside the doors to the PICU. We knew right then that, whatever she had to say, it wouldn't be good. The doctors had always spoken with us wherever we were, regardless of who was around. The only reason to move someplace more private would be to share some bad news.

She explained that they were having trouble getting the bleeding under control, and that if it continued on that course, Garrett would get as sick as he was when we first brought him in to the PICU. We still couldn't go back to see him, but were instructed to stay close by. I needed to call my sister to rally some more urgent prayer support, though. It's funny that cell phones are to be turned off in the PICU, where there is good reception, but in the waiting area, where you're permitted to use them, you have to lean into a window to maybe get a signal. It wasn't working for me then, so I had to walk halfway to the Joseph Building and cozy up to a window there.

I think I got as far as, "Hey, Shelli," before my throat closed up. She probably thought the call had dropped. When I had spoken with her earlier to let her know Garrett's procedure was over, those calls were lost several times. "Mindi? Are you there?" she asked. I eventually squeaked out a "Yeah." She knew I was upset and told me to take my time.

That's one thing I love about Shelli. I'll be lost in my emotional turmoil, not having a clue how to say what needs to be said ... In fact, being physically unable to say anything because my entire chest becomes a block of concrete. Have I even forgotten how to breathe? But she remains calm and collected. Rational. And that's just what I need to help me pull it together long enough to get a few words out.

I managed to share what Dr. Arteaga had told us. "They're having trouble controlling the bleeding, and if they don't get it under control (huge sigh), he could be as bad as he was when he first came here." Now just look at that sentence. That's a lot to shake out of uncooperative vocal cords. I don't know how anyone can understand me when I'm so emotional, but Shelli did. She asked if I wanted her to call Grandma and the rest of the family and get people praying. It's a good thing she understood that's ultimately why I was calling, or we both would have been subjected to my voice rising to an even more unpleasant pitch if any additional words were needed. I was able to let out a relieved "Yeah" in response and we said goodbye so I could get back to Chris.

I think we were allowed into Garrett's room then. There was still some blood on his scalp, which kind of jarred me, and the shunt was draining to a bag by his bed, versus being concealed under his skin and draining to his abdomen as I expected. Initially, Garrett's blood wasn't clotting, so they had to give him something for his coagulation. I don't know whether that over-corrected the problem, but they seemed concerned that his blood was then clotting in the shunt and plugging it. I think they did something to flush the shunt a few times to let the fluid drain, but it wasn't draining very quickly, and it wasn't clear cerebrospinal fluid like it was supposed to be. It remained bloody, so it was hard to tell (for me, anyway) whether the hemorrhage was still bleeding into the ventricle or if it was just a matter of the blood not clearing because the shunt was getting clogged.

Ugh. I'm going to have to break this into two posts. It's getting pretty long already, and I really should try to get some sleep. (And now I'll need to do some reading before heading to bed so I'm not thinking about this.)