Difficult images

I would love to write that things are looking up, but unfortunately I can't. I wrote about the chest x-rays we had done on Calvin last week here but I just got copies of the actual images and thought I would share them, for those of us that are more visual. There are little black pockets on the lower right hand side of the x-ray from 8/18, that are pockets of infection.

x-ray from 8/9/13

x-ray from 8/18/13 showing swollen stomach, infection and very little space in his lungs. No wonder he cant breathe. 

I wanted to see these images because I felt like I needed a visual confirmation of what was happening inside his little body. It was, and still is, extremely difficult for me to look at these, but it gives me some peace in knowing that we have done the right things for him. I have been having extreme mommy guilt about the fact that I had to stop feeding him (he has had ZERO formula for 4 1/2 days now) but seeing the second image that shows how swollen his stomach is and how little space his lungs have, confirmed to me that stopping his feeds was the right choice. His body is not processing fluids (his diapers are almost always dry and he is having no bowel movements) and feeding him was only causing him more pain and discomfort; I know that now based on these images and that gives me a tiny bit of peace. I wish there was more I could do for him, but I don't think that there is anything that we haven't already tried.

I weighed Calvin on 8/15/13 and he weighed 18.4 lbs. I gave him a nice bath and weighed him last night (8/21/13) and he is down to 17.4 lbs. Today his fever is back (100.9) and he looks very pale and blueish. His nurse has told me that the fever is the process of his body shutting down. So...I fear that it's only a matter of time now. This boy is a fighter, for sure, but at this point I'm not sure how or why he is still hanging on.

Thank you all for the continued love and prayers- it means more to me and my family than we can ever express. Please just continue to pray that my baby will have a safe journey home and that he will no longer be suffering and in pain.

More bad news...

This morning, August 18, 2013, we took Calvin to the hospital to have a follow up chest X-ray done to check and see if the pneumonia was gone and to see how much fluid he still had in his lungs. We knew, based on listening to labored breathing and by listening his lungs with a stethoscope that he still had some fluid in there, but we wanted to see how much and where it was. Results from the x-ray show that the pneumonia is worsening and is now moving into the right lung (it had previously just been in the lower left lobe.) It also showed that his stomach is distended (enlarged from internal pressure) which means that his body is not processing the fluids (medication and tiny bits of formula that I've been giving him. We started him on another antibiotic today to see if that helps the pneumonia and have gotten him a nebulizer machine to give him Albuterol treatments try and help break up the congestion in his chest. I also have to space out giving him his medications to every 2 hours instead of 4, and stop the formula altogether. 

Obviously none of this is good news. Unfortunately, I don't think there's really anything else that we can do for him now....it's all up to him. I just think his little body is slowly shutting down..he's tired. Over the last few days I've noticed that he's been having increased periods of apnea, where he stops breathing for a few seconds at a time, only to finally gasp and try and catch his breath when he comes back. Tonight, he had several longer periods of apnea...one in particular where Ryan and I both just looked at each other and knew that we were both thinking and fearing the worst...neither of us said a word, but I know we both thought that was the end.

Today was a hard day, in so many ways. Driving through cemeteries today was heart-wrenching. How does one begin to make a decision on where to bury their baby? How do I pick the perfect place for him to rest, and eventually for me and his father to rest with him? Is this place quiet enough? Is this somewhere I want to go to visit my son for the rest of my life? How do we pick the right headstone? What design would we choose? Do we bury him, or cremate him? How are we going to pay for it? Will we have to get a loan to pay off a 3-piece headstone/marker for us? How long will we be paying for that? Why do we have to make these decisions? We shouldn't have to think about all this. No one should. It sucks.

I'm sitting here next to him right now listening to his hard, labored breathing and watching him struggle to get enough oxygen into his chest and just praying that he is not in pain. I hope that he is not suffering and I hope he knows how much we love him. Most people won't understand this, and no one should have to, but today I told my baby boy that if he needed to and if he was ready, he could let go....that we would be okay, someday...somehow. I don't know exactly how we're supposed to make it through this in one piece, but I do know that we don't have any other choice, unfortunately. I know that when my baby boy leaves us, he will no longer be suffering, and he will be in a better place. I'm not a very religious person, but I do believe that he will be with my family members that have passed and they will care for him better than his father and I ever could. I will miss him with every fiber of my being, until the day that I die, but I know someday we will be together again and it will be perfect. I hope that where ever he goes, he can be a "normal" baby that walks and talks and doesn't have seizures and neurological delays and I hope that he stays with us and watches over his brother and sister. I hope he knows that we did everything we could for him and we love him more than words can describe. I hope he knows that his brother absolutely adores him and misses him even when he is sitting right next to him. I wish he could meet his baby sister and I hope that he had a good life while he was with us, despite the hardships he has endured.

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.

Calling in hospice

Making the decision to call hospice for end of life/palliative care is one that no parent should ever have to make. Calvin's doctors at the hospital recommended that we call them several times, but I fought it for a couple months because I couldn't bring myself to make that phone call...to admit defeat. I felt as though making that phone call would mean that I was giving up on my baby, which I will never do. However, over the months I have watched him deteriorate and I had gotten to a point where I was terrified of "what if?" What happens if/when he does pass away? Who do I call then? What do I do? We have a DNR in place for Calvin and have made the heart-wrenching decision that when he passes, we are going to let him pass and not try and keep him alive artificially. So what would I do in that moment? Call 911 and have them come and do CPR and everything in their power to save this little baby? Try and do CPR myself? Do nothing? I felt like I didn't have the resources I needed for when that time comes, and being the control freak that I am, I just needed to have something in place, and someone that I could call that will understand our wishes for him and help me through it.

So, on May 11, 2013, my 7 month old son was enrolled in hospice care. Its been a whirlwind of emotions. He's been assigned a nurse/case manager (two, actually) who comes to see him at least once a week and she has been an absolute blessing in our lives. She has literally been there for us 24/7 for the last several months, answers all my questions honestly and without judgement and cares for him more than she probably should. Calling in hospice has proven to be the best decision I have made for him. He hasn't been hospitalized since I called them in and they have allowed me as much or as little medical intervention as we've wanted for Calvin.

Generally, hospice care is for those who are expected to have a life span of 6 months or less...I cant say for sure that Calvin has that time frame on him, but he might. He continues to show signs of decline, and so hospice care continues.