The journey that brought us here.

I'm going to do something I haven't done before: I'm going to share Graden's journey. 

Sure, I've told you bits and pieces, memories here and there, and relevant information so you could try to understand that he has been struggling from the beginning. But, I have never truly shared (other than with a very few) the horrifying details of Graden's past. 

Before I post more, though, let me tell you how his appointment went today!
Today, we visited the Doctor who, we truly feel, saved Graden's life. He is a Pulmonologist and is amazing; there was an immediate reconnection with Graden, and both Phil and I were smiling as we watched. 

Of course, I can't speak for Phil, but I'm sure he would agree: watching a doctor be so involved with your child, who is struggling with anything, is a humbling, calming experience. Needless to say, we were instantly put at ease.

Long story short, we are finally addressing the side effects of Graden's journey that began so long ago. And, maybe I shouldn't say finally, because, honestly, our Pediatrician has done all she could do -- she has been a blessing and today our doctor acknowledged that she had followed the same steps he would have. 

So, after a long "catch up session," he ordered a test, some new medications, and set us on a new path of treatment for Graden's inflamed lungs. We feel very optimistic today. We know how quickly things can change, but it's such a nice feeling to have for now.

His journey has been on my mind a lot lately; yes, even more than normal. So, I think that's what made my decision for me to share today: the "catch up session." It took me an hour to answer the doctor's questions of "what happened next" and "how long was he sick then" and "when was that diagnosed" -- an hour! Every single year -- every few months -- Graden has been dealt a new card:  RSV, a collapsed lung, seizures, hospital visits, MRIs, CT Scans, Xrays, EMS rides, 911 calls, Tonsils/Adnoids removed, Tubes in ears, more seizures, fevers, colds, coughs, pneumonia, bronchitis, trouble breathing, brain defects... The only thing that has remained the same has been his dimples and humor. :)

Today, when the doctor said, "We always knew it was a possibility he would have trouble from the trauma he experienced when he was young," I knew it was time to share the details. There have been bad days in between, but I'm just not sure I will ever truly get over this one specific day...

Warning: The words that are about to come out of my mouth may upset you. In fact, they probably will. Read with caution.

Here is part of a personal story I have been working on this past year (since we found out about Graden's brain defects); it's about his journey. Someday, I will complete this book and share it with the world. The chapter I will paste below is about "that day." Again, read with caution. If you continue, let me say thank you for reading something so personal, special, and important to me...

Here is the picture to go with the story; this was the 2nd day of his stay. You can see the feeding tube (his nose), the respirator helping him breathe - keeping him alive (his mouth), and his chest tube (under the white tape). The hand is Phil's so you can see how small he was...

Graden's Journey: Where It All Began

The morning of December 6, 2007 I was home with my sons: Landen, who had just turned two the previous September, and Graden, my 3 week old baby. I was on maternity leave and enjoying every minute home with my two boys. Graden had gone to the doctor the day before because he was running a fever and couldn’t keep his food down. He was so warm from his fever that while I was holding him to try to breastfeed him, my husband, Phil, had to put cool, wet washcloths on the both of us. According to our pediatrician, we were to give Graden milliliters of Pedialyte until his fever broke or until he could keep it down. Every few hours he could have a little more.

            Graden was to eat at 8 o’clock that morning, but he was finally sleeping so good that I decided to wait until 9 o’clock. Phil had class at 9 and left the house around 8:30 am. Landen and I were playing in the living room, while Graden slept in his bouncy seat across the room from us. We were afraid to leave him in his crib since he wasn’t feeling well; later, I remember being quite thankful for breaking the rule of letting him sleep outside of his crib.

            Just before 9, I decided to actually walk over and check on Graden. Since he was in the same room, I had been glancing at him obsessively; but, something told me to look closer. I wonder now as I type that how the hell I just knew. Is that what “motherly instinct” is?

            As I stood above Graden, I realized that he looked as though his fever broke because he was no longer flushed. Instead, though, I slowly recognized that he was gray. I remember taking a minute to question my eyes about whether it was really gray. Without thinking, I picked him up. I began talking to him to see if he would wake up. He didn’t. Surprisingly, though, at the time, I couldn’t imagine why, which sounds horrible to say, but it was as though I really did not understand what would cause my son to change color. I knew he was sick, but I thought it was me who was making a mistake.

            I know that I yelled to Landen to give me his sippy cup as I laid Graden down on our ottoman in the living room. He hated being naked, I thought, as I unbuttoned his sleeper. Even more than being naked, he hated being wet. Surely, the water would wake him; I think I said it out loud to Landen, but more for a reassurance to myself, as if saying it out loud would make my actions justifiable. Somehow, as I was going through the steps I could think of to wake him, I managed to hear a voice in my head that said, “Just don’t shake him” because, quite honestly, I wanted to! Again, how horrible to think as a mother of an infant… I just didn’t know how else to get him to open his eyes, and I was trying to suppress the panic that was creeping up my throat.

            Pleading to him to just “open your eyes for mommy,” I grabbed my cell phone – another thing I asked Landen to get me. I will never forget the message I sent via text:  emergency come home now. Simultaneously, I was calling the pediatrician’s office on the house phone – how did I get it? Graden still hadn’t made a noise. While I was going through these motions, I remember feeling like it was taking forever for him to wake up; in reality, it was a matter of minutes. I swear to this very day that I did not know he really wasn’t breathing. Every time I look back, I wonder how the hell I didn’t know… what kind of mom doesn’t know her child, her infant, her new baby is not breathing? He was only about 8 pounds while this was happening; he was small enough that when his heart was beating, it sent his chest up and down – as though he was inhaling and exhaling. He was so still, in fact, that I remember thinking his body was shaking. And, if his body was shaking, surely he was breathing… right?

Finally, after what seemed like hours, I got the nurse on the phone, and as I was trying to stay calm, through tears that began pouring, I started to explain to the nurse that Graden “wasn’t responding.” Just as I said those words, Graden coughed. The nurse heard him (so I know I didn’t dream it) and suggested I get him straight into the ER for testing. She said their office was full until that afternoon and she didn’t want to take any chances – another thing I will be forever grateful for. I had sent another text while on hold, apparently foreshadowing that I was going to need help, even though at the time, I don’t remember understanding how severe Graden’s situation was. The text (which I really don’t remember, asked for someone to come to my house ASAP because of an emergency) I sent went to my brother, sister, and dad, who all live and work close. I didn’t care who responded first, I just knew I couldn’t take Landen to the hospital. I had a horrible delivery with both of my children and could barely manage on my own at home. My dad called to say he was able to leave work and come right over to stay with Landen. I gave him little details when he arrived, because I honestly didn’t know what to expect. I just told him that the doctor wanted him in for tests as soon as possible. Phil arrived just before my dad, and I was ready to walk out the door. Phil, who still had no idea what was going on, had left his car running in the driveway. He told me he had just walked into his classroom at IPFW when he got my text – which was, thankfully, right before he was going to silence the ringer. He didn’t question me; he simply got up and left. To this day he says he tried calling me, but I don’t remember. Every day, I appreciate that we live so close to IPFW.

On our way to the hospital, Graden was awake, but completely lethargic. Phil reached back to Graden’s car seat at one point during our trip to see how Graden was. Usually Graden tried biting or sucking on Phil’s finger whenever he reached back, but Graden did nothing. It was as though Graden didn’t even notice Phil’s hand at all. I remember how much that bothered Phil, even though he tried not to show it for my sake. Through tears and the uncontrollable shakes of my body, I told Phil what had taken place in the last 20 minutes at home. I finished just as Phil was parking in the ER lot. Phil carried Graden in, car seat carrier and all, with blanket draped over the carrier since it was so cold out. We couldn’t see Graden, but took for granted that since he had waken up right before we left, he would still be up 8 minutes later as we walked into the hospital.

The ER registering nurse met us at the door. She seemed as though she was working on something else – maybe even a bit agitated that we came in during her “down time.” Why on earth would I remember that? Regardless, Phil sat Graden’s carrier down on a desk as I was catching her up. I remember saying things like: “not responsive,” “so sick,” “gray,” “hot to touch with fevers,” “our doctor said to just come here,” and so on. As Phil pulled Graden’s blanket back, the nurse looked down and demandingly said, “come on” – as if she instantly knew something we didn’t – and we followed her straight to the back. I remember her saying, “I’ll register you later.” I knew that couldn’t be good.

She took us straight back to the heart of the ER. She transformed into a drill sergeant as she shouted orders at every staff member around and available. Actually, I think she shouted at the workers who were busy, too! Horrible things that I thought I would only ever hear and see on dramatic TV shows. She told Phil to place the carrier down on a long, adult size bed, unbuckle him, and get him out. Phil did as he was told, and within seconds, she took Graden from us and told us to follow her. Instantly, I felt helpless.

We walked into another room just a few doors down that was set up with machines of all sorts, carts full of medicines, and enough staff members to run one of those dramatic TV shows I used to watch.  Questions began flying: “Did he fall?” “Did you shake him?” Shake him? Well, I thought about…“Tell me what happened?” “How long has he not been breathing?” … Wait, he wasn’t breathing? I swore he was. I swore. How could I not know? I was so mad. Mad at myself as much as at the dumb doctors who were spending time asking me too many damn questions when I just wanted them to fix my son. I know now of course, that my answers were helping them to determine what caused him to stop breathing, but it hurt like hell being asked such disgusting questions while I was watching my son suffer less than three feet in front of me. I couldn’t even hold his hand.
            While the doctor’s continued to fire the ridiculous questions at me, I realized Phil was looking at me with eyes that I’d never noticed before. How was it after spending years together that I’d never seen those eyes? “Are you sure?” he asked me with a tone that could’ve been accusatory. Those words hurt me to this day. Phil acted as though he wanted answers and he wanted them sooner than he was getting them. He continued to look at me with despair (which bothered me because now I couldn’t fix my husband either) then switched his gaze back to the doctors trying to establish what had brought Graden into the ER.

I told them every single detail I could think of from the past 24 hours of Graden’s life as they tried to resuscitate him. Apparently on the short drive over (literally it’s less than 10 minutes), Graden had stopped breathing again. I say again, because I’m sure now as I look back that he had stopped breathing at home, too. Later we were told that the nurse who met us at the door had recognized his condition immediately and kicked into action. The doctors told us how lucky we were because “just another minute or two and…” Really? They could’ve left that part out. As if I didn’t feel badly enough for not just calling 911 in the first place, the second I suspected something was wrong. I really just did not know how serious it was, and I certainly did not expect that he truly wasn’t breathing. I even started to doubt my memory. I questioned that maybe when I ran into the bathroom that Landen may have given him a bite of his goldfish crackers – maybe one got stuck. I searched for answers that I didn’t have: answers that I still don’t have.

After a lifetime of trying, Graden began breathing. They were performing tests of all sorts and tossing him around as if he were a ragdoll. Meningitis was their first thought, so I watched them drill a hole (yes, with a drill!) into his leg. He still wasn’t breathing on his own, so a nurse was pumping air into him manually by very rhythmically pressing a balloon-shaped mask over his nose and mouth. Gradually their guesses got ruled out one by one, until finally a chest x-ray got returned that showed Graden’s right lung had completely collapsed. I didn’t even know that was possible. “Serious. Not sure. Still not breathing on his own. Not strong enough. So small.” I remember fragments of the doctor’s statements. I remember knowing how horrible of a situation we were in when the nurses were crying, too. I remember squeezing Phil’s hand so tightly that I felt as if I was hurting him and him telling me he didn’t even notice my strength.

Within minutes of being told about his lung, they got us packed up. A medic transport team came in and made me fill out papers – I still don’t know what they said – to take us straight from Dupont to Lutheran’s Children’s Hospital. The team came in the room wearing suits that I swore made them look like a helicopter evacuation squad. Phil and I swapped looks and I couldn’t help the tears that flooded my cheeks: we thought they were flying him to Riley’s Children’s Hospital.  Instead, we were told we were going to be heading to the Pediatric Intensive Care Unit, which we later termed “PICU.” Thank goodness. They told us to make our calls now. Frantically, I called my dad and then my brother and asked them to spread the word. I remember panicking because I couldn’t remember my sister’s work schedule. Honestly, we weren’t sure Graden would make it through the trip, but tests had to be done as soon as possible and Dupont wasn’t prepared to do them. Whatever it took was my philosophy.

Phil had to drive the car to Lutheran – they told him he could follow the EMS as best he could. I felt horrible he had to drive – alone. At the time though, I got over it quick, because there was no way I was leaving Graden’s side. Phil was respectful of that and didn’t even question my decision to ride in the EMS. He called his mom on the way – who later told me she hurt so badly that she had to sit down when she took the call at work. She hurt for her grandbaby and she hurt for her baby (even though her son was grown up) – a position I’m sure that wasn’t easy. Even though I was allowed to ride in the EMS, they made me sit in the front so that I couldn’t watch Graden and the nurses – that were keeping him alive – in the back.  The entire way from Dupont to Lutheran took minutes (lights and sirens) and one nurse never stopped pumping air into my son’s chest – amazing woman.  I remember the EMS crew very vividly. I remember the driver asking me questions to pass the time and in turn I asked how frustrating it was to be an EMS driver as I watched some cars refuse to move out of the way. They’d move out of the way if their kid were in the back!

Phil got there as we were wheeling into a room they’d prepared. Dupont called Lutheran and told them all about my little fighter. I will never forget the feeling I had when I noticed the clock on the wall at Lutheran read 11 something in the morning. I couldn’t believe so much had happened in just a few hours. I felt like I’d been gone all day already!

Everyone was so nice; but, not nice because they had to be, nice because I felt like they honestly cared. The driver of the EMS even told me he had a son close to Graden’s age, and as he had tears in his eyes, he told me he’d be thinking of Graden. I believed him. I believe that he takes pride in his part in helping people – I admire people like him and I don’t even know his name. I wonder if he realizes the critical role he played in saving my son’s life?

I still couldn’t touch Graden and it was killing me inside. I wanted to hold his hand, remind him that I was still there, and whisper to him my plea that he not leave me. I remember noticing the room was spacious as our nurses came in and out, adjusting machines, moving Graden from the adult bed to a crib-like bed (which he still looked so tiny in). They introduced themselves and asked a few of the same questions that last nurses had, and I answered, robotically. My tears stopped and something came over me: shock maybe? I remember my boobs were throbbing (because I hadn’t been able to feed) and the incision from my c-section burned (because I’d moved around like I was as limber as a gymnast), but when anyone asked how I was feeling, I said fine. How was I going to complain when my son was fighting for his life, and I still didn’t know why? 

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Gradually, more tests were performed. Within a few hours of arriving at Lutheran, we met the most wonderful doctors. There were two pulmonologists that work in the PICU at Lutheran. Both of them came in to discuss what was going on with Graden; one (who was a specialist) ended up becoming “our doctor” for our entire stay. Blood work had confirmed what caused Graden to be so sick; they told us together that Graden had developed RSV. It’s a respiratory virus that attacks the lungs, much like pneumonia. It’s common, it starts similar to bronchitis, and most children have the virus before they’re two years old. Since Graden had been sick, when he developed the virus, his system was already “down” and he couldn’t fight back the way a healthy, older child could have. It hit Graden hard and fast. They said Graden was one of their youngest patients they had ever seen with RSV. The RSV attacked him so hard that it caused his lung to collapse. Graden had already been struggling to breathe because he wasn’t feeling well, and his body finally said “enough was enough” – and he quit breathing. Wow. At three weeks old, my son was a fighter – thank goodness.

 What now? That was my question, but I’m not sure I got a chance to ask it out loud. The doctors explained that it was a waiting game from here on out. Graden was on a respirator – that until recently, I couldn’t acknowledge was keeping him alive – for most of his breaths. We were taught how to read all the machines, what to watch for, and what to ignore. The nurses advised us to not stare at them, because they’d be upsetting. As if it wasn’t upsetting enough to just see him hooked up with hoses and monitors everywhere? Every few breaths Graden took were his own, but for the first few days, the machine did the majority of the work. They didn’t know if he would gain the strength to breath on his own again. First, we had to wait for his lung to heal. They had sent him into surgery for a chest tube, shortly after explaining to us what was going on.

Graden wasn’t allowed to have many visitors. No one young, no one old, no one sick and so on. We didn’t want visitors anyway. I couldn’t keep telling them that I was “fine” and that Graden was a “fighter” and that everything would be “okay.” I did not know. No one really knew. Plus, I couldn’t stand the looks that showed how upset everyone else was – and I still felt like I was to blame. I didn’t want to hear who was praying for me. I couldn’t even pray myself. I tried calling some people back here and there whenever I checked my voicemails. Sometimes it was nice to focus on trying to make someone else feel that everything was going to be “okay”… but all we knew for sure is that we would only know in time. I eventually came to hate that word: time. Our parents came up that first day to check on us, as much as to check on Graden. My brother had a cold so he didn’t come up – I remember hearing a sort of relief that he didn’t have to “see Graden that way” in his voice as he explained to me why he couldn’t be there. Our sisters stopped in and out – but I can’t remember who came when.

The first day felt like it lasted three days. They tried removing him from the respirator to see if he could breathe any breaths on his own – and he crashed. Again, visions of a bad TV show flashed through my mind as nurses from everywhere came running into the room. We stood as far back as we could to give them the space they needed and watched as they “brought him back.” They’d regulate the monitors, respirators, IV, and anything else he was attached to, in order to adjust to any changes he made: forward or backward. Every few hours they tested him to see if he could take another breath on his own and become less independent on the respirator. Sometimes it would work well, and other times he’d take a step in the wrong direction.

The first night, I got sick and had to go home in the middle of the night to take a shower and do something about having stopped breastfeeding so suddenly. I remember the nurses bought me cabbage, and I thought they were crazy but so thoughtful. It was so painful. I sobbed as I left my baby – but the nurses promised they weren’t making any adjustments through the night and would call if Graden made any changes while I was gone: good or bad. Phil was there, so that made me feel a little better, but I hated it, nonetheless.

I came back as quickly as I could and remember that I still felt horrible. Upon my arrival, Phil and the nurses asked, “Feeling better?” to which I replied, “Much.” Not at all, was what I should’ve said.