Hospitalization #6, Day 3

We're back. Did I mention that we left the hospital? We went home July 17, last Saturday, at about 11 pm. On Wednesday I went back to work. I had clinic in the morning (a new clinic I'm just starting for breastfeeding support, yay!) and in the afternoon I had a hysterectomy scheduled. Fortunately, there were 2 very capable senior residents operating with me, because half-way through the case, I had to run out of the OR and throw up in the garbage can. Also fortunately, one of my colleagues was available to come down and supervise the rest of the case. (My patient did really well, no problems, thanks a million to everyone who helped!)

I went home, and Pete was in bed, moaning. I crawled in next to him and whimpered a little myself. Pete's sister Penny and her husband Frank were staying with us to help with Annie and Lively, so while Lively napped, Annie enjoyed some aunt and uncle adventures. Well, she did for a few hours, until she started throwing up. And then Penny started feeling sick. And then Frank. And then our babysitter texted us to say both her kids were throwing up.

Twelve hours later, Annie was good as new, although the rest of us were gulping ginger ale and dragging ourselves from bed to the TV, where Annie happily enjoyed a day of videos. I slept most of the day, because I had been the least sick of all the adults and so had been up all night with Annie the night before. By 24 hours, we had all mostly recovered.

Pete and I assumed that Lively was the source of this. We thought that he had probably picked up something at the hospital or at a doctor appointment, and he had vomited quite a bit more than usual Tuesday night, and was better on Wednesday, so it seemed to fit. We all recovered enough to have a birthday party for Annie and Lively on Saturday July 24. Lively seemed a little tired and fussy during the party, but he took a long nap and was OK when he woke up.

Sunday morning around 5 am, I woke up to Lively throwing up. This isn't terribly unusual. However, this time he didn't settle down, but just kept emptying his stomach. His feeds were going into his intestine, and he seemed only to be losing stomach acid, so I didn't worry too much about dehydration. Two hours later, however, when there was no sign of the vomiting subsiding, we decided, reluctantly, to take him to the emergency room. I hated to do it, because I knew they would admit him, and I still thought we could keep him hydrated at home. We switched his feeds to Pedialyte, and Pete packed a bag while I cleaned up Lively.

By the time Pete was ready to leave with him, just a short time later, I considered calling an ambulance. Lively didn't look well at all. He was whimpering, gagging, and no longer opening his eyes or looking alert. He responded to us stimulating him, but sluggishly. Pete rushed him to the hospital, and only after getting quite a lot of IV fluid, Lively woke up and smiled at us. When we got there, he looked like this:

Lively is doing much better now. He's well-hydrated and feeling OK. He's not vomiting any more, but he's still having a lot of diarrhea, so we're still in the hospital. His feeds haven't been restarted yet (maybe today?), so my chubby little boy is shrinking before my eyes. Perhaps he'll get so hungry, he'll eat a sandwich!

Here's Lively today, feeling more like himself:

Perhaps later I'll write about how I feel like everything that happens to Lively is a side effect of some other intervention, and how I wonder if he would be a walking, talking, eating boy at home right now if we'd just left him alone. I also want to write about how I just found out that a little girl whose blog I've been following who also had infantile spasms died very unexpectedly a few days ago. I don't know this girl or her family, and her story is quite different from Lively's, but obviously, they have quite a bit in common. I found out about Samantha through hopefulparents.org, and her mother's blog is here. I am devastated for her family. I'm going to go hold my baby close now, and never let him go.

Lively the First

One year ago today, my grandfather died. It's astounding to me that it has been a year. Like I mentioned in my last post, I can't remember a time when my Lively (the one-year-old!) was not in my life. And although my son Lively was born just before my grandfather Lively died, it seems like I saw my grandfather a few days ago. 

I think of my grandfather every day, and miss him so much that my heart hurts, every day. I also forget that he's gone all the time. Something big might happen in my life, for the good or the bad, and I will think, I can't wait to call my grandparents and tell them about this. And it will feel like a shock when I realize that he's not there.

So much has happened in the last year, so many scary and busy and heart-wrenching days (as well as quite a few good ones) have occurred, that I'm fairly certain that my brain and my heart have been unable to accept my grandfather's death. It's just too much to process. Will I ever? Hard to say right now.

Here are some of my favorite photos of my grandfather, in no particular order.

This is Christmas 2008. Annie was 1 1/2, and I was pretty newly pregnant with Lively. My grandfather always looked happy like this, even when chemo made him feel terrible.

This is my grandfather holding Annie during her first birthday party at my parents' house in Kentucky.

January 2008. Annie is around 5 months old. My grandparents had us over for breakfast (blueberry pancakes). My grandfather always wore a kimono in the mornings!

Holding Annie Christmas 2007. She was 4 months old, and this photo was taken just before we left to come home to Ann Arbor.

Also Christmas 2007. My grandfather reading The Night Before Christmas to Annie and Lively the Second (my cousin Patrick and his wife Lee's little boy). I love this one.

My grandparents came to visit us in Ann Arbor when Annie was 8 weeks old. There are several photos I love from that visit.

I really like this one of both my grandparents.

Annie is about 6 weeks old in this one. This is also breakfast at my grandparents' house, something Pete and I always loved to do when we visited. I had to include this one because of the kimono!

My grandfather just before the start of my wedding.

My favorite. The best day of my life was the day Pete and I got married, and my grandfather gave a blessing at our wedding. Pete and I will always remember this moment in particular. I especially love this photo because of the look on my grandfather's face. You can tell he's saying something silly.

I haven't known exactly how to mark this anniversary (for myself), but I felt it was important to. I want to read this blog with my Lively one day, and I want him to be able to understand why I needed to name him after this great man. 

One!

Dear Lively,

How can it be that one year ago today, I met you for the first time? It seems like you were born just days ago, and at the same time, I can't remember what it is like not to have you in my life.

It has been a hard year for our family, my love. One year ago today was the last time I spoke with my beloved Granddaddy on the phone. He was very sick, at home with hospice care, and he had been quite sedated and sleepy for several days. After you were born, he woke up enough to talk to me on the phone. I told him that you had arrived, that all was well, that you were healthy and beautiful and perfect. And he said, "Of course he is. Why wouldn't he be?"

My grandfather was Lively Wilson, and he has always been extraordinarily special to me. When your father and I found out that we were going to have a baby boy, we instantly agreed that we would name you Lively, because we both loved my grandfather so much and thought there could be no better role model for you (with the exception, in my mind, of your own father, for whom you are also named). Your great-grandfather knew of your arrival, but I am sad that he wasn't able to see you in person. My heart broke when you were 7 days old and he died. I miss him every day. I wonder if he's somewhere that he can hear me talk to him, if he can see you, if he can watch over or guide you. I hope he can.

At the same time that I felt shattered by the loss of my grandfather, I felt whole and purposeful and hopeful by your presence in our family. Your personality was apparent even at one week old. You are happy! You are full of love. You are calm and cuddly. I instantly fell madly in love with you, and somehow I love you more each day.

I can't help but realize that your birthday is also probably the anniversary of your stroke. We can never know what happened with certainty, but you probably had a stroke due to some unknown complication of your birth. I have looked back at photos of your first day, week, your first months, to see if there is any clue that something was wrong. I have not found the slightest hint.

During your first year you have been hospitalized 5 times, not including your birth. You have been admitted to the ICU twice. You have had surgery twice, and you have been intubated 6 times. You may undergo surgery again tomorrow. You have had 2 MRIs and probably 50 x-rays. You have had NG tubes and NJ tubes. You have had your blood drawn 50 times or more. You have taken hundreds of doses of medication. You have had countless seizures. You have spent over 50 nights in the hospital, including tonight. It's all enough to make a fellow grumpy. But you look like this:

Your father, sister, and I love you madly, as do your many grandparents, aunts, uncles, cousins, and friends. Like your namesake, you seem to have a special charm that draws people to you. People can't help but grin when they see your beautiful, toothy smile.

My dream for you: be happy. Be healthy. Know that your family loves you. Continue to radiate optimism and joy. And heal, my sweet baby. Please heal.

Happy birthday, my precious Lively.

Love,
Mama

Thank you, updates

Thank you to all my friends and family members who send love and support our way. It helps us more than I can say.

Today is hospital day 17 for Lively. We're out of the ICU, on the main hospital floor. On Monday, Lively had surgery to place his G-J tube, and at the same time the surgeons removed one of his chest tubes. Having the G-J is going as well as it could be at this point, I guess. He seems to be tolerating it well, his pain is under control, and it's awfully nice to see his face again without all the tape and the tube going into his nose. It has been terribly hard for me, though, to see the tube sticking out of his belly, and to feel like this may be a better thing for him than the one going into his nose.

After surgery, the docs ordered a chest x-ray in the recovery room, and unfortunately, it showed that Lively's pneumothorax had recurred. Basically, his lung was no longer fully expanded. Lively still had one chest tube in place, and so they hooked this one back to suction to try to help his lung completely inflate. This seemed to work, so this morning they turned off the suction and planned to remove the chest tube this evening if his subsequent chest x-ray looked like his lung was still fully inflated, indicating that it had healed from the initial injury.

Unfortunately, Lively's lung collapsed again slightly after the suction stopped. This means he has to be hooked up to suction again for 48 hours, then put to water seal for another 24-ish hours (meaning that the tube is in and the system is closed, but there's nothing sucking air or fluid out of the chest cavity to help keep his lung inflated). Then if all goes well, maybe we can lose chest tube #2. If his lung is still not fully expanded, we start the 3 or 4 day cycle again.

Lively's last hospitalization was 26 days. It's unbelievable to me that we may approach that again.

Tomorrow is Lively's first birthday, and I'm very sad to spend it in the hospital. Very, very sad. I'm very tired, and very grumpy. And at the same time, I remember all we've gone through, how sick he was, how scared I was that I might lose him or that he may be damaged in terrible, terrible, permanent ways. So I look at his smiling face, and I try very hard to be grateful that I can hold him and kiss him and tickle him and love his whole fat and happy self.

Another trip to the PICU

Lively still has not been able to eat, and every week or so, he pulls his NJ tube out of his nose. Because of this, we recently saw a surgeon who recommended a GJ tube, which goes through his abdominal wall into his stomach, and also snakes down into his intestine. It looks like this:

This procedure was scheduled for this Friday, July 2. On Sunday night (June 27), Lively pulled his NJ tube out (again), and it's a very long, stressful process to have it replaced. At one point when Lively was hospitalized in April/May, we had thought that Lively would go home with an NG tube, which was something either Pete or I could replace if we needed to. The nurses had taught Pete and me how to place an NG, and it's something I've done in adults many times. Pete and I talked about it on the phone (he was at a conference in Colorado), and decided that I would put in the NG tube at home. For the long term, Lively needs his feeds put into his intestine, but we hoped to avoid another trip (or 2, or 3) to the hospital to have the NJ placed before his scheduled surgery, 5 days away.

I put the tube in on Monday morning (June 28). Lively was very fussy, but this is not unusual. He cried longer than usual after I pushed the tube in. Initially, I worried that I had the tube in the wrong place, but I listened with my stethoscope over his stomach while I pushed some air through the tube, and it sounded like it was supposed to. I checked this several times. Lively became pretty upset, and even threw up once, but I was able to comfort him, and finally he fell asleep. When he woke up, he smiled at me. He coughed a little, which was new, and when I listened to his lungs, they sounded terrible. He coughed again, I listened again, and they sounded better. Pete and I debated on the phone whether or not I should take him in to the Emergency Department. He looked OK, so I hesitated, but finally, I decided that I was going to worry until someone checked him out, so we went to the hospital. This is Lively in the ED:

He was calm, able to rest and nap. A pediatrician listened to Lively, and thought his lungs sounded OK. I had the tube feeds (breast milk) running through his feeding tube, and he seemed to be tolerating that well with no further vomiting. The doctor ordered an x-ray, and everyone felt that we'd probably be able to go home afterward. I took this picture of Lively getting his x-ray, thinking I would send it to Pete later, maybe when we got home, and we would talk about what a sweet, calm baby Lively is, even when he's velcroed in an uncomfortable position for a test.

 Then I saw his x-ray.

When you look at this, his right side is on the left side of the picture, so the tube is on the right side of his body. His stomach is on the left. So the tube is going down his trachea instead of his esophagus, down his right main stem bronchus, and then punctures through his lung. The fluffy white stuff on his right side is milk.

We were quickly taken back to the ED, and almost as soon as we got there, Lively started to have respiratory distress. The surgeons came down and took him quickly to surgery. The surgeon was able to put a small camera in his chest and suck out all the milk and irrigate the area. Then he put in a chest tube to remove the air and fluid around the lung to help it re-expand. This is a picture of Lively's post-operative x-ray:

Lively's lung didn't inflate right away. Here you can see the tube going from outside his body into his chest cavity. His lung is collapsed -- there is a dense white area from the middle-right side of his chest (shown in the left side of this picture). This is his lung, with no air in it. The outer part of his chest, which looks blacker has no lung in it. It's filled with gas, but this is all outside his lung. The surgeon repositioned Lively's chest tube, and finally his lung inflated. Then it looked like this:

At this point, his lung has reinflated, and he was doing fine. The plan was to watch him overnight and to try to take him off the ventilator in a day or two. 

This is Lively after we got settled into our room in the Pediatric Intensive Care Unit:

Lively did well overnight. On Tuesday (June 29) he was stable all day. Pete flew back from Colorado and got to the hospital in the early afternoon. All of Lively's vital signs were fine. The doctors planned to extubate him on Wednesday. Pete and I were skeptical. During our last visit to the PICU, Lively seemed ready to extubate after just one day on the ventilator, but it was instantly clear that he was not ready as soon as the breathing tube was removed. 

On Wednesday morning (June 30) the docs took the breathing tube out. Again, it was immediately apparent that Lively was not doing well. He was stridorous, breathing around 70 times a minute, and using all his accessory muscles to draw in air. The docs tried to replace the breathing tube, but his upper airway was so swollen, they couldn't get it back in right away. They used an ambu bag to push helium and oxygen into his lungs, and after the scariest 20 or 30 minutes of my life, they were able to intubate him again. In the process, his right lung collapsed again, and on Thursday morning (July 1) when it had not inflated on its own, the docs had to place a second chest tube.

Throughout the day Thursday, Lively lost all of his IVs. Anyone who tries usually has trouble drawing blood or starting an IV on him. The docs had to put in a central line in his right internal jugular vein. Because of this indwelling catheter, as well as his sedation, his Lovenox (blood-thinning medication) was restarted to prevent him from developing blood clots in his legs or around his central line. Also on Thursday, Lively had another MRI of his brain. 

On Friday (July 2), Lively started to wake up. The surgeons felt that he wasn't quite ready for extubation, but they weaned some of his sedation medications so that he would wake up a little and try to breathe on his own. He opened his eyes and looked at Pete and me, tried to cough, tried to cry, but couldn't because of the tube in his throat. It was absolutely heartbreaking. The good news on Friday: Lively's MRI looked great. The area of his stroke was still apparent, as expected, but there was no sign of any further stroke activity, and his brain otherwise looked normal. This is especially good news, because it makes the possibility of genetic disorders that are sometimes related to recurrent strokes and seizures quite unlikely. In fact, the neurologists feel like Lively does not need any further genetic testing to look for mitochondrial disorders, which are the particular disorders about which they were concerned. The testing involved a muscle biopsy, so I am very happy to spare him this.

On Saturday morning (July 3), the docs were able to extubate Lively. This time he was ready, and so far he's doing well breathing on his own. I think his throat is hurting him, because he tries to babble or cry, and then he grimaces and stops. He still has both chest tubes, and these are clearly bothering him. But he smiled at me today, and I even saw him do a happy dance for a few seconds, which, of course, made me feel completely happy for about 3 full seconds. It's a start.

After about six hours, I got to hold him again.

There have been so many things that have been excruciating about this week's experience. Being back in the hospital, back in the PICU, back on a ventilator, having emergency surgery, chest tubes, central lines . . . . and then knowing that all of this is happening because I put a tube through his lung instead of into his stomach. I've been a doctor for 6 years (which is admittedly not that long) and I've made mistakes in that time, but never one that has hurt anyone as severely as I hurt my own child.  I have said that I will be OK when he wakes up, when he's off the ventilator and breathing on his own, when I can hold him. And today those things happened, which is good. Better than good. Miraculous, wonderful, amazingly good. But when I leave the hospital late at night to go home and try to sleep, all I can think of is the sound of Lively's cry after I put the tube in him.

I understand that these things happen. I know now that when a child has swallowing difficulties, these things happen more easily. One of the attending doctors in the PICU, who has been in practice for many years, told me that he once did the exact same thing to his own child. (Pete says that when I heard this, he could see me take a couple steps back from the ledge.) If another doctor or nurse, or even Pete had been the one to misplace the tube, I know that I would believe that this is a known complication of the procedure. I would not blame that person, or feel that the person was an incompetent provider (or parent). I know that I was trying to do what was best for Lively, to help him, not to hurt him. But for now, I'm absolutely haunted by what I did.