Another big event

It's been a while since I updated, I know. It's now August 17, 2013 and Calvin is 9 months, 28 days old. This boy is nothing short of a fighter- always has been. About a month or so ago, Ryan and I made the decision that we (I, really) would take the boys to California to meet and see my family members that they hadn't met or seen in a while. I spoke with Calvin's doctors, neurologists and hospice team and they all agreed (with some chagrin) that taking him to California on a 5 hour flight would be okay, and it would be a good thing for us to spend some time away from our everyday life and be with family. So, on Friday August 2, 2013, we packed up the boys and headed for California. We got through the flight without a hitch and everything was going well. We had a get-together on Saturday with some great friends of ours, and another, larger get-together on Sunday with family. Everyone was happy and excited to meet Calvin and see Paul again. Everything was going great. Ryan had to fly home on Monday, while we (myself, Calvin and Paul) were planning to stay in California until Friday the 9th. Calvin was doing pretty well out there- he had some problems with taking his bottles a couple times, but that was not abnormal at all. He also sounded like he was having trouble breathing, but that was "normal" for him as well and I attributed it to the fact that some kids with his syndrome have a floppy larynx, and that might be the case with him as well. He never seemed to be in any respiratory distress and his seizures were "under control" as much as they could be with his medications.

On Wednesday, August 7th, we went to Disneyland. It was me, Calvin, Paul, my 2 sisters, my brother, my dad and my 5 year old nephew. I had planned originally to not have Calvin there all day, just because I  thought it would be a little much for him to handle. We didn't get there until about 3:30 pm though and didn't plan to be there for too long, so I thought it would be okay. The day at Disneyland was GREAT. We went to California Adventure, watched some parades, went over to Disneyland and rode the train, went to Toon Town and to Mickey Mouse's house and met Mickey, went on the Jungle Cruise and overall just had a great day. Calvin did not sleep much at all, which is abnormal for him, but we had to keep taking him in and out of the stroller to get on the train, which probably kept him up. He took his bottles and his medications perfectly that day and seemed to be doing extremely well. We left Disneyland about 9 pm or so, and Calvin (and the other boys) fell asleep pretty much as soon as we started the car and headed home. Here is a picture of him at Disneyland. This is the biggest smile I have ever seen on him.

About 20 minutes before we got home, I started to hear Calvin make some noises that seemed a little out of the norm. I figured he was having trouble breathing, so as soon as we got home, we took him inside and I asked my mom to pull him out of his car seat and asked her to burp him or something, that it sounded like he was having trouble breathing. I got Paul into bed then went back to Calvin. I took him from my mom to change a diaper and that's when I noticed the problem. He was seizing like nothing I had seen before. His eyes were closed, and he was just twitching very rhythmically and making soft grunting noises, which he didn't usually do. Its hard to describe what he was going through, but I knew in my heart that something was very wrong and I didn't like it. I gave him some extra doses of his "emergency" medication and it didn't seem to do anything. A bit later, after I couldn't pull him out of it with his normal emergency meds, I called his hospice nurse in Maryland (at midnight California time, so 3am her time) and described what was happening and asked her what I should do. I took a video of him with my phone and sent it to her as well. Over the next 3 or so hours, I gave him probably 4-5 times his normal dosages to try and pull him out of the seizure. He finally seemed to calm down, although he had not come back to his "normal" state. He also, all of a sudden, seemed to be burning up. Taking his temperature revealed 103+ degree fever. The next 24-48 hours is kind of a blur. We got very little sleep, Calvin and I. He seemed to be out of the "big" seizure, but I could tell that his brain was still seizing. He basically was unresponsive and didn't open his eyes, wouldn't take a bottle or any medications for 2 days. I was able to get small amounts of his emergency seizure medication and Tylenol in his mouth, and was giving him another emergency seizure medication rectally every 4-6 hours. Early Thursday morning, I was in contact with his hospice nurse again, sending her updated videos of what was happening and how he was acting, and she told me that she thought we needed to come home ASAP. She told me that based on what she was seeing of him, that he had hours, maybe days left and if I wanted to be home when his time came, that I need to change my flight and get home. She also asked me if I was even comfortable taking him on the flight, and suggested that if I didn't, that I just stay in California and let him pass there. I didn't 100% agree with what she was saying, so I asked her to contact a hospice nurse by my parents house and have them come out and assess him and see what they thought- that maybe another nurse could give her a better, more complete picture than I was providing. So, a different nurse came out and basically said the same thing. She listened to his lungs and said that he has fluid in his lungs and he has pneumonia and that we needed to get home. She (along with my dad) suggested that we get Calvin on some emergency oxygen because he was in respiratory distress and having trouble breathing. So, we got an oxygen machine out and started him on that, and got him some rectal Motrin to try and bring down the fever.

At this point, things kind of got real. I had been told several times that he had hours to live and I either needed to get him home or hang tight in California and wait. I made the decision to take my baby home. If he was going to die, it needed to happen at home with his daddy. Calvin's hospice nurse told me that she contacted the airline, and their policy for if someone dies on the flight, is to make an emergency landing. So she told me that if he passes on the flight, I needed to do my best to stay calm and hold him until we landed. Not sure how I was supposed to "stay calm" in that scenario, but okay. My dad was able to change mine and Paul's flight and get my mom on the same red-eye flight back to Maryland that night, Thursday August 8th. My dad was able to get a gate pass to get through security and accompany us all the way to the gate up until the point that we boarded to help us with Calvin's oxygen machine. We didn't have enough time to get a portable, FAA approved oxygen device for the flight home, so we had to take the oxygen off him before boarding and wait until we got to my house where there was another machine waiting. The flight home was scary, to say the least. My mom was holding Calvin so I could deal with my 2 1/2 year old, and I don't think she'll ever get over the fear she felt every single second of that flight. At one point, she even took him back and arranged for the flight attendants to give him some of the portable oxygen they carry on the plane because she was so worried about how shallow his breathing was.

We landed about 7 am Maryland time on Friday August 9th, and after getting all our luggage from baggage claim, taking the shuttle to the rental car terminal, fighting with installing car seats and getting the luggage in the rental, we were on our way home. There was a minor incident with some debris in the road and a trip into the guardrail on the drive home, but we made it around 10am. We rushed Calvin inside, took him out of his cars eat and he was just burning up. Ryan was actually shocked to see how bad he looked and felt, even though I had been telling him all along. He got a towel and some ice packs to try and bring down his core temperature and we put the oxygen back on him. The next several hours were again a blur for me. I was beyond exhausted after not having slept for 2 days or so and all the stress of leaving California and travelling home so abruptly, on top of now being 33 weeks pregnant. So, we arranged to have Calvin's hospice nurse meet Ryan and Calvin at the hospital for a chest x-ray to confirm the pneumonia and get him on some antibiotics. I stayed home with my mom and Paul, and we all tried to take a nap. Sure enough, Ryan called to say there was fluid in Calvin's lower left lobe and he has pneumonia. They got him some rectal antibiotics and more medications for the seizures, since he wasn't taking his normal meds and Ryan brought him home.

At that point, Calvin had not eaten anything or had his normal medications that he has been on since he was born in over 2 days. I was obviously concerned that he was starving to death and needed his meds, so Ryan and I began to ask about putting a feeding tube down his nose. He had a feeding tube in last time he was in the PICU back in March, so I knew it was possible and it was something that I had maintained before and was comfortable caring for him with it in. His hospice nurse fought us on it for most of the day, because she thought it would be uncomfortable for him and she was convinced that he was dying and we needed to just keep him on morphine and the other meds to keep him comfortable until he passes. Ryan and I weren't ready to give up on him yet, and we didn't want him to die of something we could control (pneumonia, starvation, medication withdrawal) so we argued (and admittedly, were a little mean) with his nurse and finally got them to agree to let us take him back to the hospital that same day and get a feeding tube put in him. We immediately began giving him his normal meds and a tiny bit of Pedialyte and formula and he seemed to do okay with it.

Since then, Calvin is still fighting, despite being told dozens of times that he only had hours, maybe days left to live. He is still not doing very well, but he's still with us right now. The fever is now gone, and his lungs started to clear up, but have now filled with fluid again. He has a nasty cough that sounds like he is trying to clear it, but he just doesn't have the strength to get all the crud out. We have been camped out, sleeping on the couch with him because his oxygen machine is out here (that he is still on, pretty much 24/7) and he needs to be sleeping mostly up-right because of the fluid in his lungs. I am giving him morphine and other meds every 4 hours to try and keep him comfortable. He is pretty much medicinally sedated and is not awake or alert for more than a few minutes at a time, once or twice a day. He sounds terrible; he is wheezy and is having a lot of trouble breathing. It's now been 10 days since his big event, and I don't know where we go from here. His father and I will never give up on this baby...but I'm not sure how much fight his little body has left. His secondary nurse came for a visit today and said he still has fluid in his lungs and she said this is "100%, most definitely, without a doubt...the end." We're taking him back to the hospital tomorrow to get another chest x-ray done to see how much fluid he has in his lungs and to see if its worse/better than it was before. I don't know where we go from here. Ryan is convinced that he will pull through this, and obviously I hope for that also, but I just don't know. I'm scared that he won't. But, he's a fighter and I can only hope that he proves us all wrong. As of right now, it's just not his time to go.

I spend every second of my life right now watching this child and listening to his every sound. Every time he holds his breath or grunts or makes any noise my heart drops. I live in fear of closing my eyes because maybe when I wake up, he won't be breathing any more. I've run through that scenario hundreds of times in my head- what will I do, what will I say? What if Ryan's at work? How will I pull myself together enough to call him and say "come home, Calvin's gone"? How will I call my parents and say those words? What will I tell his brother? How will I be happy about giving birth to another baby in 7-ish weeks, a few weeks before Calvin's 1st birthday if he is gone? How will I make my 2 1/2 year old understand that we are not replacing Calvin? I don't know. I don't want to. I hate this for Calvin; I hate this for all of us.