The worst night of my life.

 This was Jake after he had been stabilized, returned to consciousness, and received a lot of oxygen, fluids, and had his body temp brought back up to normal. This was probably about an hour after we had been admitted, as we had to wait for the pediatric ENT who was on call that night to arrive at the hospital and prepare for Jakes surgery. The staff on call had called CHOP at our request, we had wanted to have him transferred to CHOP to have his surgery there, but they determined that he was not stable enough to transfer and his situation was too critical, thereby making it necessary to have his surgery there at Chester County. You can see how pale he looks, and this was him looking downright tan compared to his look upon arrival. You can see I'm wearing scrubs, they had had me change as my blood soaked clothing was "scaring the other patients" and they had washed my blood covered face for me. I'm laying on the stretcher with Jake, terrified to let him out of my site and dreading the upcoming surgery. I think I'm in shock.  (Edited to remove image, as it didn't belong on the internet at large)

 Pop Pop in a surgical hat. We had all been charged with keeping Jake awake until his surgery so were pulling out every trick in our book, from showing him pictures on our iPhones to singing songs to....well, dressing up in surgical gear. He didn't want to see anyone but Pop Pop in the hat. He wore it pretty well, don't you think? I can't tell you what a comfort it was to have my dad there with us during prep, and my Mom there as well during surgery. My brother was at the house with the kids ~ having family not only nearby, but willing to drop everything and be at your side at a moments notice is a blessing. I had 10 friends practically begging to come sit with me in the waiting room. This sounds horrible, but I couldn't have anyone but family there. After seeing what I saw that night I was truly afraid that Jake was going to die. This may sound weird, but all of my friends who wanted to come sit had young kids and I just could not forever scar them by having them see their friend be told that their son died. I couldn't do that to another Mom. It was like.....I don't know, I can't even explain it. I just knew that if the Dr's were going to come tell me that Jake was dead, or brain dead from bleeding, no one should have to see that. No one. 

 This was the morning after surgery, his first popsicle. This felt like a big victory as the morning after his original surgery he was adamently refusing ALL liquids or solids. He was either heavily sedated on morphene or briefly eating or drinking. It made for a very peaceful day. More on that below.

 My dear friend and neighbor Sara sent us this. Miles is Jake's favorite dog on earth, and in showing him photos to keep him conscious he kept asking for Miles pictures. When she asked what she could do to help on Monday night I requested Miles pics. On Tuesday morning I woke up to two. This one, and one of Miles "smiling" with his mouth open. That one was incredibly timely ~ the nurse had to get Jake to open his mouth and he steadfastly refused. In a moment of luck, I grabbed my phone and said "Jake, please do it? Just like Miles is doing it! Be like your best friend Miles!!" and sure enough, Jake opened up! Miles saved the day. Its the little miracles, it really is. 

 Its good to be king. This was Jake at dinner time on Tuesday. I think he's eating pudding. His diet has pretty much been as unhealthy as I have ever imagined for the past 13 days but....well......what are you gonna do? He's alive. 

Jake sitting at the island with me just now, Thursday night, as I made dinner and the rest of the family is out at Luke's basketball game. The simple act of making dinner feels very restorative. I spent most of the day in bed, in my pajamas. I'm having a really hard time with all of this, and am calling tomorrow to make an appointment with my therapist. I cry every time a friend calls. I sobbed walking back into my kitchen yesterday coming home from the hospital. I know I should dwell on the fact that Jake DID live.....but seeing half of your babies blood volume pour out of his mouth, seeing his body go pale, his eyes shut, his consciousness slip away, giant clots pour out of his mouth........to think he is dying.....well, it is quite beyond what I feel any Mother (or child) ought to have to endure. I know that people have to endure way worse things ~ long bouts of debilitating and degrading diseases. Terrifying and disfiguring illnesses that ultimately kill them. This was quick. And hell, Jake LIVED and LIVED with no long term consequences! So please understand I don't mean to be overly dramatic or to compare this incident to all of the horrible and truly evil things that we as humans have to deal with on a daily basis. I know that in the grand scheme we were very lucky. Its just that, for me, this was a biggie, man. This was unlike anything I have ever seen, and one moment life was normal, a very Rockwell-esque little scene of three children and a mother sitting down to some quiche and homemade soup with candles lit and some music playing.......and suddenly there is blood everywhere and a shirtless, unconscious baby and a screaming mother and two wide eyed young children taking it all in. Here is what happened. 

Sunday night we had a great night as a family. Jake was eating pretty well and still fighting drinking, as he had since discharge. We were staying on top of his pain meds (tylenol and oxycodone) to the minute. I was very alarmed when he awoke on Monday morning with a bone dry diaper and was screaming in pain. The screaming in pain thing was noting new, this was pretty much par for the course as it was the end of his 4 hour window before his new dose of meds. We went through the now common ritual of trying to get the meds into him (this had never, his entire life, been an issue. Post surgery its become a nightmare).  The screaming continued for about 15 minutes, and no manner of cajoling, begging, threatening, bribing etc would work to get him to drink ANYTHING. I had had it. The dry diaper had me freaked that he was dehydrated, and he was totally refusing everything, and was in obvious pain and refusing to drink or take his meds. ALL reasons listed to call the CHOP ENT line. I called. Nate was in his office on the phone. The ENT called me back quickly. Through my tears I told her what was going on. She immediately told me that I had to take him down to the CHOP ER. THE CHOP ER? (With traffic, an hour away). Nate was working, I had no sitter) My Mom could be there by 11, but Nate was going in to his local office to work, the kids would have to get to school, I would need a car, there would be carseat issues, etc etc, etc. I kept crying. While I kept crying, Jake stopped crying. In fact, he stopped crying and requested cereal. And a banana. And toast. 

So when Nate came out of his office, Jake was happily drinking water, eating puffins and coconut milk, eating a banana, and eating toast. When I told him I had to take Jake to the CHOP ER he looked at me like I had two heads. He told me to do what I thought was best, but that he was way behind at work due to the week before and he was unavailable to help me. I called my Mom back and talked it through with her, and we decided to wait it out a bit. I called Jeannie and invited her and Henry over to keep us company and to help me feel better about my decision/evaluate Jakes eating/drinking/behavior etc, and we all got in the shower. Jake must have peed twice, as his diaper was quite heavy. I felt relieved and as though I had obviously overreacted. 

We had a lovely morning with the kids playing, Jake drinking here and there, and eating lunch. He took a totally normal nap, woke up screaming as normal as it was the end of a med cycle, and we had a relaxing afternoon at the house. We have been on lockdown since the surgery as I am phobic about him picking up a bug on top of his surgery. When Nate wasn't home by 6:10 I called him and told him the kids were hungry. He said he was just leaving but to start without him. I put out our dinners and gave Jake EVERYTHING as per the new routine, he gets ANYTHING I thought he might eat. That night it was leftover blueberry pancakes from our brunch on sunday, quiche, corn soup, and a blueberry yogurt. JUST as I was about to take my first bite, Jake jumped up and started crying (nothing new). He put his hands up to his mouth, and suddenly I noticed what looked like some blueberry yogurt pooling in his bottom lip. I grabbed a napkin and said, "Guys is that yogurt or BLOOD?" Suddenly Jake coughed, and a HUGE stream of blood came pouring out. I knew immediately what had happened, this was in the info discharge packet. They had told me that a scab could break loose and bleeding could occur. They did NOT tell me that this could happen in such a manner that a child could almost quite literally bleed to death. 

I jumped up with Jake in my arms. He immediately started panicking and crying, Hard. This of course sprayed the blood ALL OVER my face and in my eyes. I ran to my phone. I first hit Nate on my speed dial, and immediately hung up and called 911. I was initially calm. I grabbed paper towels and conveyed my address/township/his birthdate/what happened etc. I think that I was pretty calm. Suddenly a large (like, mouse sized) clot came up and out of Jakes mouth. I became decidedly.not.calm. The dispatcher told me to turn him on his side, so ripped off his blood soaked shirt (I wanted to be able to tell if he was still breathing, I was starting to get terrified) and held him sideways in my left arm like one would a colicky baby. He was sputtering and screaming, and it was hard to hear the dispatcher. She told me to make sure the front door was unlocked, so I went and threw it wide open. Looking back at my phone records, I made the call at 6:21. The blood was pouring out of Jake. At this point I started screaming, WHERE IS THE AMBULANCE? HOW FAR AWAY ARE THEY? THERE IS SO MUCH BLOOD, THERE IS BLOOD ALL OVER, PLEASE TELL THEM TO HURRY, PLEASE ~ MY BABY IS BLEEDING TO DEATH ~ WHERE ARE THEY????? She told me they were stuck in traffic. I live two miles from the hospital. All I could think about was what was I going to do when they got there? Luke and Julia were going to have to go in the ambulance with me ~ I had candles lit, food in the oven, and the house had blood ALL over it. Nate was going to walk in and assume that we had all been murdered. I couldn't call him because the dispatcher would not let me get off the line with her. I asked her if I could call him from the land line (which is Nate's office phone) ~ ran into his office, and it was not on the hook. At this point I'm screaming and crying as there have been a good 4 or 5 of these huge clots ~ and Jakes eyes are closing. My arm is up against his heart and I can feel it beating, but I'm screaming, WHERE is the Ambulance? I keep saying, there is SO MUCH BLOOD, WHERE ARE THEY? I NEED THEM NOW, WE ARE RUNNING OUT OF TIME, PLEASE TELL THEM I NEED THEM NOW I AM LOSING HIM, HE IS ONLY TWO AND HE IS RUNNING OUT OF TIME..........

Right then I see the lights of Nate's car pull into the drive way. I RUN over through the living room and BANG on the window screaming GET IN HERE and gesturing. He comes running in the french doors and, well, starts freaking out. In his defense, Nate is normally a really calm, cool and collected dude. However, he was walking into a war zone, with zero warning. We spoke at 6:10 and all was nifty, and it was 6:31 and I was covered in blood (remember, even my entire face is COVERED), my clothing is entirely soaked in blood, Jake is shirtless and looks like a just born baby he is so bloody, his eyes are closed and he is breathing shallowly, and the kitchen is a pool of blood. We have a large kitchen, and all of it is blood covered. The blood covers the hallway, into his office, and into the living room. He starts screaming and crying. I tell him that the scabs broke off and this is from his T&A. I tell him that that the Ambulance will be here any minute. He immediately tells Luke and Julia to go upstairs. I give him my cell phone and tell him to talk to the dispatcher as I try to rouse Jake, try to get him to open his eyes. I start screaming to Nate to ask them how far away the ambulance is, if we should throw Jake in the car and drive there or if they are close. Right at that moment a woman appears at our front door, which was open. I scream "are you the AMBULANCE?" "No" she says, I'm your neighbor. "@&^#%&@^#%"I say. "I work with Good Fellowship Ambulance and I heard your call come across the dispatch and I drove down here to help you until they arrived. You are doing a great job Mom. Sit down Mom, sit right here". I'm FREAKING. I tell her to look at the blood. I tell her I'm scared he is dying. He has one of these clots hanging out of his mouth and I ask her what to do, do I pull it out? She tells me not to touch anything and to keep talking to him, to try to keep him awake. A moment later the ambulance arrives. There are three of them. They begin to start opening their equipment and I scream NO WAY ~ LOOK AT THE BLOOD~ THERE IS NO TIME TO DO ANYTHING HERE WE NEED TO GET HIM TO THE HOSPITAL IMMEDIATELY HE ISN'T CONSCIOUS" and I literally took Jakes limp little body and ran outside to the ambulance. As I was running out the door I screamed to Nate "CALL MY PARENTS NOWWWWWWW". 

We got up into the Ambulance. I was shaking so badly I could barely place Jake onto the stretcher, it was like my muscles were locked up with tension or panic and he was trapped in them, I couldn't release them. They wanted me to place him on his side on the stretcher. He was not conscious. They immediately took off. At this point I asked the question that I had been thinking since I called 911, "Is Jake going to die?". It was 6:33 when we pulled out of the driveway. I had called at 6:21. He was so pale he was translucent, with no shirt on and in the wake of the 3 lbs he had lost over the course of this past week he looked so tiny, covered in blood from head to toe, blood in his big boy blond haircut, he looked like a soldier or a prisoner of war. His breathing was shallow, his eyes closed. 

The ambulance was careening around corners, people were falling all over the place. They immediately got some sort of suction tube down his throat, I don't know if they were clearing his airway or what. That roused him a little bit and his little eyelids fluttered some. I was screaming his name, trying despretely to get him to keep those eyes open. We arrived at the hospital within about 4 minutes. As they raced us into a PACKED ER it was as though a record stopped. I didn't realize that my face was awash in blood or that both of my arms were fully matted with it, as was the entirety of my outfit. I did hear it sloshing in my shoe, but hadn't grasped what a site I was until I saw every single face in the ER turn to stare at us with abject horror as we came running through. 

We were immediately in a room with no less than 15 people surrounding Jake on the bed. His bleeding had stopped as abruptly as it had started and he was laying on his back, eyes closed. At this point I got eerily calm, being able to answer questions made me focus, made me feel as though I could DO something, something for Jake, something other than hopelessly hold him as I felt his life seep away before my eyes. Seeing two of my friends (nurses), IN THE ROOM, felt like a blessing. Ironically, they were girls that I do dance party with. Guess that broken hip came in handy when it came to comfort in the midst of crisis.  

His body Temp was very low, so they threw all sorts of warmers under and over him. His pulse was also very low, so they got an oxygen mask on him. They took blood immediately to test it, to see his levels and to test his blood type for a transfusion. They immediately hooked up an IV to start giving him fluids. It was at this point that I realized that I had left the house in my slippers, with no purse/ID/wallet....or phone. I couldn't even call Nate. Once they had gotten a thorough history from me they wanted me up at Jake's head, trying to talk to him and to keep his eyes open. This was difficult. He was so weak, it was so hard to talk to him without just grabbing his little body and sobbing. I tried to hold it together, to be strong for him. Nate walked in maybe 15 minutes after we got there. He had called my parents and they had high tailed it over to our house. In a stroke of luck my brother had been headed to hear some NFL speaker at my parents church, which is about 1/4 mile from our house. My parents called him, and he came as well.  My Mom said that when she arrived at the house she was terrified ~ she said that she assumed that Jake was going to die due to the horror scene of blood all over. She still can't talk about what she saw that night without crying.  Nate immediately left for the hospital and my Mom immediately went upstairs to find Luke and Jules. She said that they were huddled together in our bed, holding hands with the covers over them. They said "Mom Mom, Daddy was crying. Daddy has never cried before. And Mom Mom, Mommy was crying too. And Mom Mom, Jakey was bleeding all over. He went away in an Ambulance.".

My poor family had to clean up the incredible and extensive mess, for which I will be eternally grateful. I'm still finding some blood splatter, but they did an unbelievable job. There was so much blood that it actually seeped through our kitchen floors and stained out basement ceiling. No one should ever have to do such a thing. Ever. My Dad came to the hospital while Jake was waiting to go into surgery. My Mom finished cleaning up and then joined us right as surgery started. My Brother played with the kids, distracted them and kept them having a great time, and then put them to bed. I emailed both of the kids teachers to give them a heads up about what the kids witnessed in case there was any weird fall out or acting out the next day at school. I do love their schools and the community at both. I feel as though they are in very good hands. So far they seem to have taken it all in stride, for which I am tremendously grateful. 

The surgeons goal was to get Jake sedated, get in there, find the source of the bleed, "clean everything up", and get out. They told us the surgery could take 5, or it could take 15. After an hour, I was FREAKING OUT. I had been texting girlfriends in random groups......and mid surgery my phone died. I was afraid Jake died on the table. I just felt like he was so weak going in, all I could think was that something went wrong. That something gave way. Some artery had been nicked. I don't know. It was just.taking.too.long. I was pacing. I was a wreck. My parents were working hard to distract me, and it would work for a moment, and I chatter away.......and then a giant heaving sob would come out. Finally I couldn't take it and had my Mom pick up the phone that was supposed to be a one way for them to call us ~ and they told us that they were finishing up and he would be done soon. When they came to get us they said one parent could come in. We sortov laughed and both walked right in. 

He was just waking up. We both cried. Here is the best way I can explain what happened. Jake had huge adenoids and tonsils. So his scabs were WAY larger than the average child having this surgery. The removal left these, like, pockets, where they had been. Jake's body went into overdrive, forming, not really scar tissue, but this membranous like stuff in these pockets, with scabs over top of that. Because of how little he had been drinking, the scabs actually got LARGER. They used the example of a large cut on your knee. If you had a brace on your knee and never bent it, you would have one large scab. If you frequently, over and over bent your knee, you would have a supple, smaller scab. Jake, not drinking well, formed a large, thick, solid scab, with these hyper drive membrane scar tissue like stuff in the pockets underneath. They were actually bulging out, which was why his speech was so garbled and why he had kept gagging on food, his airway was TINY. When one of them finally gave way, it gave way good. The mouth is incredibly vascular, and all of those "clots" were these membranous scar tissue like formations. The blood was simply blood. 

Based on his hemoglobin counts which were drawn on Tuesday morning of 7.4, the ENT who performed the surgery said that he estimated that Jake had lost 1/ 2 of the blood in his body on Monday night. Can you imagine that? I can't. I really can't. I saw it, and I can't imagine it. 

More on the hospital later. He comes out of anesthesia well. That night he had some water and a Popsicle. I was so spent, mentally, physically and emotionally that I actually fell asleep holding him in the rocking chair in the recovery chair. By the time we got him to his room I was passed out on my cot. I don't even remember Nate leaving. 

I will say that this has shaken me to my core. I'm having a hard time. I feel depressed, anxious, fearful. I keep thinking about it. Picturing his eyes closing. Thinking about him dying. Thinking about what could have happened differently. What if it happened while he was sleeping? What if a sitter was here? Or Nate was out of town? (He was supposed to be in CO that day). What if? And I know, yes, I know, that that does me no good, but I can't stop it. I can't stop picturing his body in that ambulance. And I'm in a fog. I don't want to call people back because I just don't know what to say. I don't feel like good company. I don't know how to accept help right now, because I don't know if I can let Jake out of my site, yet. Yet he's driving me a little crazy, frankly. A very special thank you to all of the friends who just show up. Showing up is what life is about, I'm learning. Not asking "what can I do", but doing it. For Laura, showing up at the hospital before 7 am on Tuesday morning just to hug me and let me cry (and with good coffee, to boot!). To Melissa, bringing me breakfast and clothes and going straight to my house as soon as she heard, unasked as she was assuming my mom would be there and would want to be at the hospital. To Regan and Jenny and Dee, coming to the hospital with delicious food, or books for Jake, or beautiful wonderful trashy magazines for me :).  To Melissa R showing up with cars for Jake and food for me and great hugs and good curse words for bad doctors. To Tiffany, for feeding my family on Tuesday night, to Becca and Rich for feeding us Wednesday night, to Jeannie, for the beautiful meal and flowers you brought today. To Kim and Brendan for the awesome box of arts and crafts things you sent today. And Laura, after crying all day for what feels like 2 straight weeks, and after sleeping in a crib with a 2.5 year old, most of the time UNDER said 2.5 year old, you showing up at my house tonight and giving me an amazing massage was truly a gift of love, and you healed not just my body but something in my soul, too. 

Didn't we just DO this whole tragedy gig 8 months ago, universe? I know its a new calander year, but REALLY?