why I can't leave southern california
Current mood: momentarily tranquil
On New Year's Eve, we spent the evening with our neighbors. Then the next day, on a whim we decided to go down to Main Beach in Laguna. Here's what transpired:
Lucca discovers that cool thing where the water dissolves the sand around your feet and buries them
sharing a father son moment
mom and Lu taking it all in
the tree of us
Lu plays in the surf! This was the first time he wasn't nervous about letting the water surround him
All in all, it was a huge reminder of why we live where we do. Unplanned and unexpected moments like this justify all that we deal with living here in orange county, and because of that I wouldn't want to raise Lucca anywhere else.
Jordan passed away peacefully in his sleep monday night. We found him in his little bed on tuesday morning. We didn't know it was time for him to go, but he knew that he was ready. The way I described it to Suzanne was that if we'd had the chance to say a formal goodbye, that means that he would have been suffering.
Overall, we are in shock. We are constantly vacillating between grief for the loss of our son and happiness that he is now complete and at peace. That is our solace in this whole thing. Jordan has been suffering and incomplete in so many ways since his accident, and now finally he has closure. We really try to focus on that fact, and we look back on all the joy he brought us while he was here.
A memorial service will be held at 2:00pm on sunday November 19th South Shores Church. You can find a map here. Please bear in mind that this is a celebration of his life, and not a mourning of his passage.
In lieu of flowers, we have set up a memorial fund so that we will always be able to commemorate and celebrate his life and what he gave to us. Some of the ways we will be doing this is through a plaque at Pacific View Cemetery. It will be in a big stone book in the "garden of reflection" and actually does overlook the pacific ocean. We also hope to set up a bench at the local park that we always took Jordan to. If you would like to find out how contribute, please send me a message.
I'd like to thank you all on behalf of Jordan for the love and support that you've shown our family over these past months. They have been the most difficult months that this family has seen, and we would not have gotten through it without all of you. Jordan's life brought together and united countless people and he taught us all the value of a single human life. He showed us a strength that most of us hope to never test.
Over the weekend Jordan had to go back into the hospital. Since he came back from the hospital the first time he has been fussy, and we thought that this was due to stomach problems and reflux. It all came to a head on Thursday when he was with Suzanne and he spit up a little blood. Suzanne took him to the ER that evening, which we felt was a good thing, getting Jordan the attention and care that he needed. This was good on the stomach front, because he was able to see a GI doctor and get all kinds of scans and tests that he needed (he wasn't going to be able to see one until the end of May as it stood).
The first thing the Doctor did on Friday was give him a endoscopy, which is a camera that goes through the mouth and into the stomach. With this, he was able to see that Jordan has a hiatal hernia, which is not too serious (60% of adults have it), but does cause the symptoms of reflux, which means lots of spit-up, and acids burn in the esophagus. It occurs when the opening in your diaphram muscle (the big muscle that seperates your chest from your abdomen) is too large which allows your stomach to pooch up through it sometimes. Not serious, as I said, but good to know. The initial treatment is medication (i.e. Prevacid), and if necessary down the road, surgery.
For Saturday the doctor recommended that we do another test (GI scan where they feed Jordan barium and then x-ray him to see what's going on inside), as well as a CT scan on his brain just to check progress. We had to fight to get them to do the CT scan, which we really wanted to see because we hadn't seen one since Jordan left CHOC a month and a half ago.
Suzanne was at the hospital when they did the CT scan and gave her the results, and I was home, walking Lucca ot the park. The results were not good. As it turns out, as a result of the initial injury to Jordan's head, most of his gray matter has died, and been replaced by brain fluid. This is a crushing blow to us as it means that Jordan is, and will continue to be, only operating on a very basic and core level. Because so much of his gray matter has died, there is no oppurtunity for him to progress very far at all beyond where his is now, which is in the most minimal infantile functions.
We met with a neurosurgeon that night who walked us in detail through the CT and explained the different parts of the brain and what was working and such. Where Jordan is now, he can eat, breathe, cry on his own, and not much more. He moves and "looks" around and such, but the movements are not purposeful- there are no facilities to process what he is doing or seeing.
As I've said, right now me and Suzanne are simply and thoroughly crushed. There are some huge decisions coming up that we have to look at and work through, such as care for Jordan, etc. Right now, he's the same kid that he was after we brought him home from CHOC, the same kid he was last week, but the future has to be looked upon differently.
An intrinsic part of being a parent is raising a child with your hopes and dreams for his future; you dedicate yourself and pour your energy into fostering that child's growth and development, molding and shaping his ethics and morals, his dreams, him. What Jordan has gone through has taken that opportunity away. We now need to look forward with a different perspective, and the two of us are still trying to get our minds (and hearts) around what entails.
Thankfully, I have a job where they understand what's going on and have been nothing but supportive. They've given me at least this week off, and I plan on spending as much time with Jordan as possible and doing a lot of research into what is ahead. Like I said, huge decisions are coming up. Every choice we make, we not only have to take into account what's best for Jordan, but also what is best for the future of the of the family as well.
Joshua
Currently
listening
:
The Fragile
By
Nine Inch Nails
Release date: 21 September, 1999
First off, I've been sucking at this whole regular-update thing and I apologize.. its really easy to get caught up in the hectic day-to-day lately, but I need to remember to keep the people who have shown us so much support informed. So.... here we go!
The biggest news- as a lot of you have heard, Jordan is HOME! He came home from the hospital a week ago last sunday, which is huge for us. Bear in mind that a week and a half before that, the doctors told us that he wasn't going to make it.. What a turnaround! He's doing okay since he's been home, although we've had to bring him in to his Dr a couple times because he has days where he cries constantly. By constantly I mean every moment he's awake. The doctor has looked at him a couple times, and he thinks that it might simply be a bad reaction (reflux) to the lactose formula that he had in the hospital and came home with. We've since switched him to a much more baby-friendly formula, and he seems to be settling down a bit in the last 24 hours.
Yesterday someone from the county came to assess Jordan for state-funded recuperative therapy (occupational and physical), and he will also be seeing physical therapists referred by our doctor. The biggest thing for the little guy that needs to get better are still his eyes- he's having difficulty maintaining eye muscle control and tracking objects/people across his field of vision. This is critical, as the majority of his development from this point involving coordination and such is all based on his ability to see.
Overall, this is a tough time of adjustment for Suzanne and me. We have gotten past the initial chaos of the whole hospital and coming-home experience and now are beginning to settle in and look to the future, which can be more un-settling than anything now that we can sit down and mull things over. I think the biggest thing that affects us is the uncertainty of the future, as well as feelings of sadness and loss- it's difficult at times to stay strong after having spent three healthy months with our little boy. We know where we both need to be in regards to these issues, but we're not there yet.
Lucca on the other hand has been great! He's learning more and more every day, and his vocabulary seems to be increasing exponentially. He's saying everything from "burrito" to "horsey", as well as starting to put words together (not just repeating), with even the occasional three word sentence every now and then. I would estimate his vocabulary at 40-50 words. All around, Lucca is amazing- even at his young age, he seems to be sensitive to whats going on, doing things like hugging baby Jordan and mommy when they cry and such.
I'm at work on lunch so I don't have any pictures, but I will try my hardest in the next couple days to recent ones. Also, if you've shown interest in helping us watch Lucca, you might hear from us soon, as most of the out-of-town family has gone home at this point.
Just a quick update, because I'm drained- physically, mentally, emotionally, drained.
I'll start with good news- Jordan will be going home in a couple days! Sunday night will mark two weeks from when we had to call 911 and take him to the hospital. It's been the toughest time of both of our lives, but through it all, Suzanne and I have become closer and stronger than ever.
Today was a rough day in a lot of ways. As you know, we were transferred out of the PICU a few days ago, and it has been pretty night-and-day as far as hospital staff attentiveness. On one side, it's ok because Jordan is sustaining and doesn't need to be watched quite so closely, but on the flip, we've hardly talked to a doctor since we got moved. This SUCKS because we've felt as parents that we should probably be in the loop for what's been up with Jordan. Then today around 4, the metabolic doctor comes by and says off the cuff "hey, I hear you're going home!" This freaked us out, because we hadn't heard anything about it, he'd just had an MRI, and we hadn't heard results, as well as other details we were unsure of or had't been informed of. As soon as this happened, we got in the ear of our nurse and made sure that before they just booted us, we wanted to talk to the various doctors and specialists and get an update of where he was, as well as what to do when we got him home. Suz really laid into one of the doctors, and they got together and agreed with what we were saying (hooray for common sense!).
The resolution is that tomorrow we will be having a 'family conference' with us, the attending doctor, the neurologist, and hopefully a radiologist who will break down and explain the results of today's MRI. After we talked to them they made it clear that they wouldn't just kick us out the door and that we could stay until at least Sunday if needed. We're happy with the end result, but it made for an extremely difficult and draining day.
SO how's Jordan doing you ask? Well, he's doing exceptionally well considering all that he has been through. The little guy is breathing and eating on his own, sleeping decently, and moving a bit as well. Every day, we can see marked improvement from the day before. He is by no means the same Jordan he was before all this happened. The little guy is having a lot of trouble lining up his eyes and eyelids, and can't really track an object/person yet. He doesn't focus on things, he seems to respond better to noise that visual things. We've been working a lot with him to try and get him to follow us with his eyes, and doing lots of little excercises that they taught us to help his eye muscles hopefully re-coordinate and re-strengthen.
On most levels, Jor is about on the same level as a newborn baby, cognitively and reactively. This seems overwhelming to us right now, (its kinda like his brain rebooted in a way) but one doctor made a good point when he said that 3 months isn't a long time to make up. Also, at his age his brain still has the ability to adapt to injuries like this- it is actually possibly for un-injured parts of his brain to kind of re-route brain functions, so other parts of his brain can pick up the work of the injured ones. His future is completely unknown at this point, and often we find ourselves thinking about how he might end up, and it can be disheartening. What we really need to focus on is the progress that Jordan is making every day (i.e. today he grabbed onto mommy's hand on his own) and not focus what might happen down the road.
So yeah, that's the latest from here, we're gonna try and get some earlier rest tonight so we can be back at the hospital by 7am tomorrow to catch any doctors/specialists on early rounds
Suzanne blogged more from here point of view, you can find it here .
Oh one more thing, the place we are staying, Ronald McDonald House, is an amazing charity, and not difficult to get involved in. To be able to come "home" to a hot home-cooked meal, a made bed, and a warm shower just minutes from the hospital after being there all day has been priceless. Suzanne has actually teared up a little because of this place. Find one in your area and see how you can help!
I almost forgot to mention the biggest milestone ahead- getting Jordan out of the ICU and into a normal hospital room! This could happen some time this week, hopefully sooner than later, although we will miss the PICU staff at CHOC (Children's Hospital Orange County). We have been impressed at every turn by the doctors, residents, nurses, and even the respiratory therapists, who have all shown that they genuinely care about the kids they take care of.
OK, so here is how you can possibly help us out- by hanging out with Lucca some time :). We are currently in the position of having our two children living in two different cities, 20 miles apart. This is ok right now and for the next week or so because we have a lot of family in town, but they need to be relieved here and there, and we will really need more help after they all have to go home. Suzanne and I have for the most part been at the hospital and staying nights at the Ronald McDonald house (another AMAZING charity, I'll tell more about it another time). We've been able to see Lucca for a few hours every day. If you can help by watching Lucca even for a couple hours here or there, day/night/weekend/whatever, at our house or otherwise, please email me at jawschwah@yahoo.com. Let me know that you are interested, and when you are available, and I will be compiling a mailing list and a calendar. If you've already expressed interest you're already on the list, still please email me with times you can help.
we've taken some pictures of Jordan in the hospital; here is a glimpse at what we've been going through the last week:
Jordan all tubed up, approx Wednesday
worried Daddy
Mommy holds Baby
Mommy with no-respirator Jordan - he looks a lot better!
I'll start by saying that Jordan is doing better than we could have possibly expected. Right now, mommy is holding him, and he just took his first bottle feed in over a week.
At this point in Jordan's recovery, its all about setting milestones for the little guy to achieve. The ones we set going into the weekend and throughout, Jordan not only hit, but he also already did some things well ahead of schedule. He is also starting to cry, which really affected us- just to hear his little voice again was thrilling.
The first milestone had to do with breathing. Since Tuesday, Jordan has been on a ventilator, which involves a breathing tube down into his lungs through his mouth and is connected to a machine that pumps breaths into his lungs. On Friday, as he was starting to wake up some, he was fighting and gagging on the tube (gagging is a good sign) and breathing over the ventilator, (i.e. machine breaths/min = 20, total breaths/min = 30+). He started getting annoyed with the tube on Friday, and on Saturday they started ramping down the machine to less assisted breaths. By Sunday morning they had the ventilator to zero breaths and they were able to take out the tube in the early afternoon!
The next milestone after that was to get his to mouth-feed from a bottle. There are a lot of things that need to go right when he eats, mostly having to do with the coordination of sucking, swallowing, and breathing. I wasn't expecting this to happen immediately, but today when the Occupational Therapist came in to assess him, he took the bottle fairly well- enough to try and convert him to full bottle feeds. There are a lot of things that need to go right when he eats, mostly having to do with the coordination of sucking, swallowing, and breathing. This means we get to work on removing one more tube, specifically the g-tube (gastrointestinal) that goes through his nose and down into his belly.
As far as medicines go, they have been able to get him off of everything- that's right, no medicine needed! He started with 3 antibiotics, an antiviral, zantac, mannitol, ativan, dilantin, and a partridge in a pear tree, so there's been marked progress all along in that regard.
So to sum things up, Jordan went from not having much of a chance to live past Thursday to marked improvement on a seemingly accelerated basis, considering what he has been through the past week. Our next milestones are full bottle feedings (he needs to get to 4oz every 3 hours), more purposeful movement on his part, more alertness, and being able to track with his eyes.
Jordan is by no means through this, but I feel the worst has passed. Now its up to Jordan to get as close to the old Jordan as possible, and for us to wait and see and help when we can. We have a long long road ahead of us, but both Suzanne and I are just thankful that we have our son, and that is what we value most.
This is part A, as I am in the hospital but would still like to post some pictures, as well as let you know, if you live near us, how you can help. Thank You all for your support so far.. without it, this whole thing would be much more difficult for our little family.
guarded optimism
Current mood: ..guardedly optimistic
well, we've achieved a major milestone. The MRI results were good in the respect that the immediate threat of the edema (brain swelling) had subsided and is heading in the direction it should. The danger of edema of the brain is that when the brain swells, it doesn't really have anywhere to go. Most critical danger is that this can cause the brain to herniate, or push down on the brain stem (which controls your most basic functions such as heart and lungs) and cause brain death. For Jordan, the swelling stopped before this happened. This is great news, and what had been most crucial the past 72 hours.
The secondary issue at hand is that edema can damage the brain. What we are looking at now is getting Jordan recovered so that we can assess what damage has taken place in that little head of his. This can be the broadest spectrum you can imagine brain-wise, anywhere from perfectly healthy to unresponsive.
Jordan's current status is similar to how he is when he sleeps- one doc called it a light(?) comatose state. The good news is that over the last couple days we've seen his state improve day to day, going from almost completely unresponsive on wednesday to reacting to touch, sound, and that annoying breathing tube. Our next mini-milestone is to get him breathing fully on his own, which he is working towards. After that it is a lot of wait-n-see.
So yeah, guarded optimism.. the immediate threat has passed, now we take it step by step, milestone by milestone, and wait and see what the future holds for Baby Jordan. Whenever we're in his room, we make a concerted effort to be nothing but positive- lots of talking and singing to him.
Me and Suz are holding up ok considering the circumstances.. we've been each others' rock and taken turns supporting each other when needed. We've also gotten signed up for a place called Ronald McDonald house, which is an AMAZING place right near the hospital where we can get a good night's rest in a nice-hotel quality private room and a hot meal. As for Lucca, we see him for a couple-few hours every day, and the rest of the time, he's being spoiled to death by friends and family.
Once again, thank you for all of your support- every comment, email, and text message is a reminder of what a great network of friends and family we have :)
-Joshua
p.s. sorry for no pic, I'll make up for it next time I can update from home =/
Jordan Update
Current mood: Pretty Much Indescribable
FYI-
I'm sorry, I'm exhausted and overwhelmed, but Suz has written about the latest developments:
-Joshua
**edit- thank you all for your love and support- it means more than you can imagine to Suzanne and me.. please keep up the encouragement, as it does not fall on deaf ears. If there was any night to pray and/or send your positive energy and thoughts our way, tonight and tomorrow is the time, as you can see below tomorrow's tests are a crucial turning point little Jordan's life.
Suzanne Swinson wrote
Greetings,
Brief update on Jordan. We are staying at Jordan's bedside pretty much 24/7 these days so not much time to fill you all in, but here goes.
Jordan's health took a turn for the worse. While the seizures have stopped, he is now fighting an infection and swelling throughout his brain. The official term is massive edema to the brain. This may be a reaction to a lack of oxygen - perhaps his oxygen was reduced when I found him face down, and he was only getting the bare minimum? The CT scan is concomitant with a patient who has had an event like a stroke. There is swelling throughout his brain and he is fighting for his life. The picture is very, very grim. We were told that IF he were to recover from this event that his quality of life would be greatly diminished. There would be big decisions for Josh and I to make. The next 24 to 48 hours is crucial as it will mean life or death for Jordan. A recovery would be nothing short of a miracle.
We need you all to pray and focus positive energy for Jordan. He is in what is called a low-grade coma right now. Tomorrow is a big day for him as he is scheduled to have an EEG and MRI, MRV, MRA. These tests will tell us how extensive the damage is and what is in the future for him. Please pray that his tests will show little to no damage.
I don't want to leave you all hopeless so here are some encouraging signs right now. Jordan can open one of his eyes and see you to some degree. He responds to physical stimuli (pain, touch) and also to voices and music. Last night I was holding him, and he moved his head just a little and opened his eye and looked at me. He grips your finger and can sort of grasp things like soft toys. He loves when his dad and I sing to him - he opens his eye and looks at us. He is such a fighter and using everything he can to fight a fever and other signs of inflammation in the brain.
Love you all. Will keep you posted when I know more.
Last night, Jordan had to go to the hospital. Mid-evening, he was napping, and when we checked on him, he was having trouble breathing and not responsive- eyes rolled back, and tensing up over and over as if having a seizure. We called 911 and they came and took him to the local CHOC Emergency Room, and they treated him and ran an bunch of tests. They did cat scan and a bunch of bloodwork, but everything is inconclusive at this time. The leading theory is that he has some sort of infection, possibly encephilitis, which is an infection of the brain tissue.
As of this evening, its coming up on 24 hours, and he hasn't opened his eyes yet, but he has responded a little bit to our touch with movement and a little bit of noise.
Jordan will be in the hospital for possibly one to two weeks, with one of us keeping a vigil over him at all times. I'll try to keep things updated here- in the meantime, feel free to email/comment/text us, but please do not call yet, as we're most likely in the ICU.
Please send Jordan your prayers/positive energy/thoughts, and hopefully soon things will take a more positive turn.
Here's how it went down.. Jordan's due date was Thanksgiving, and after spending about a week in and out of the Doctor's/Hostipal/Lab and almost having to induce early, Jordan decided to come on his own when he was supposed to. We were preparing Thanksgiving dinner with my parents and brother when Suz started having serious contractions. I asked her if she wanted to go to the hospital, but this is Suzanne's first Thanksgiving in over 10 years that she was going to have turkey (when I met her, she was a vegan, but I've slowly but surely been curing her of that- she's up to fish and poultry now.) Well, we made it through the main meal, but before dessert, she was ready to go- I loaded her up in the car and took off for the hospital around 3:30. We went to South Coast Medical in Laguna Beach, and were addmitted to room 111.. . the same room Lucca was born in! Here's the view from the room shortly after we were admitted:
Suz said the pretty view helped her keep calm during the labor. I was Coach, also helping her keep calm, as well as reminding her about little things, like breathing :D. Overall, the labor went really well (for me anyways.. suz might have a different viewpoint on that one), and after some serious push, Jordan came to us:
he was all mushy and bruised at first from the birth, but still adorable. Check out those Swinson lips!
Here's the first mommy and daddy pics w/ baby:
I can't descibe this feeling. I felt it with Lucca those first couple minutes when he was born, and felt it again at this moment. People who have had a kid know this feeling. The cool thing is how a child has the ability to sustain that feeling.
The next day, he started to look less purple:
Lucca meets baby bro! Lucca took to Jordan right away! It's awesome- Lucca calls him "bay-beeee" and always tries to snuggle and hug and kiss him. This bodes well for the future, and is the primary reason we wanted our kids close together:
Of course, George Bananas took right to the new addition to the family as well. Have you heard the legend of George Bananas??
Jordan comes home:
new babies are squishy!
Here's a pic of our new family, minus George:
More Lucca/Jordan lubs:
some super-uber-baby-cuteness:
Jordan-san practices his Karate Kid Crane Kick... or maybe he's just raising the roof, woop woop!
'wanna see my "O"-face??'
just cute.
you talkin' to me?!?
So yeah, that's the new baby! We're getting spotty-at-best sleep right now, but its all worth it, of course. I'll try to post more snaps soon!
I've been meaning to post various pictures here, so I'll do as many series as I can starting with Lucca's 1st Birthday. His party was on August 7th, and it was lots of fun- lots of friends and family.
Here's the invite we sent out:
Lucca's main cake. He had his own cake, which you will see him proceed to obliterate shortly.
Lucca with his cake:
This next one is my favorite:
Cake-Paw!
Mommy gets in on the maelstrom:
Cake undies? Look out ladies!
Daddy hoses baby off:
Daddy and Lucca with all his Phat Lewtz:
Finally, Lucca and his best friend (and our godson) Davin. Lucca likes to flash the bling when he pimps the ladies in his H2:
All in all the day was a blast. Lucca had fun and got tons of presents, as well as getting to meet a lot of Mommy and Daddy's friends.
crushed
thankful
worried
