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This week will mean many things for our family. Our lives will be different. We are different. We are the same people underneath and we have the same love, if not more love, than we had before for one another. But we are changed forever. Whereas we used to fret over really insignificant things, our eyes are open now to what's really important. And what's really important does not include the size of our house, the year of our car, boats, purses, etc. In fact, when I visited home shortly after the accident I walked into my closet, looked at all the clothes and accessories hanging lifelessly and asked out loud, "Why do I have all of this sh*t?" None of it mattered. And you really get perspective on that after you've lived in sweatpants and tshirts everyday of the week with no makeup.
This week we get to be a family again. Our family will be different, but the same. We get to laugh, joke, yell, tease, hug, snuggle, and bicker on a more permanent basis. We get to eat around the dinner table, have movie nights, and Sunday Specials (chocolate chip pancakes - Gabe's favorite).
This week is full of big changes and big moves. We have to make sure all of the medical equipment gets where it needs to go, that we have "to go" medical equipment to make the trip from Phoenix to Tucson and that we have some kind of idea about how to get PT, OT, and speech set up as soon as possible.
This week I have to speak with Early Intervention again. Get this - I talked to the lady on Friday about signing papers and I asked her again about how much PT we're going to get from the state. She was in a hurry so she said abruptly, "EI is only going to give you 4 times a month..." She has said this a couple times so I'm calling on all my EI specialists who have given me such good advice. How do I get more? Because it sounds like the EI lady has been trained to read a script and say "...four times a month, four times a month."
This week might actually happen and it all starts about 8 hours from now when I wake up. Of course, this is all tentative. It won't be final until MIA doctor who comes back tomorrow, supposedly, makes the official confirmation.
We have been waiting for this week. Wish us luck and prayers because there will be A LOT of changes.
Christian asleep in the day room as I start my blog. BTW, he was on his side and got himself on his stomach and fell asleep. I didn't have the heart to move him.
This picture is just a inkling of a scowl. I just got the tale end of it. I don't remember but he was probably pissed at me for trying to wipe his nose. As you can see I was unsuccessful in this endeavor.
Still hot here and some of the other more fragile kids are being moved down stairs. It's actually not too bad for us here in the day room. We might have to sleep in here but Christian looks comfy so that's all that matters.
Komodo Dragons and a two headed snake on Conan. Let the hilarity ensue.
"Pool...we meet again."
"I don't know about this."
Christian had physical therapy in the pool today and it went well. It definitely tired him out and made him relax a little.
Hip rotation to warm up those hips and get him in a sitting position.
Sorry about the cleavage shot but it's not often Christian will relax enough to lay against me like this. So tired after swimming, he's actually snuggling with Mommy.
"If I can just...figure...out how to use these things called arms I would be on my back in no time!"
As for discharge...grrr. We need the doctor's blessing and he's MIA for the week. Wonderful. And the social worker is way over worked so I don't expect him to work on my behalf. Just tell me what needs to be done and I'll do it. I really don't mind. The doctor's assistant said, "It is a possibility," when I asked him if we could discharge next week. Vague much? Anyway, stay tuned.
We tried a capping trial today and Christian wasn't a fan. He seemed like he started to panic a bit. I wasn't surprised really because I didn't feel he was ready to cap yet. He's only been on the PMV for a week and only nonstop for about four days now. I thought it was a little ambitious to cap quite yet but I was willing to give it a try. I know he needs to strengthen those breathing muscles again and he'll be able to do that with the PMV. We'll try a few seconds every day and then a few minutes and then a few hours...you get the idea.
I'm not terribly disappointed by the capping trial. I would hate for him to be stressed out and agitated over capping because that could hold back his recovery and progress in other areas. So I'm not fighting that battle. Besides, he did a lot of really cool stuff today and he's had a lot of new developments in the last 5 days or so. In fact, he's tolerating his feedings a lot better and not throwing up as much. This has allowed us to shorten his feeds a bit, which allows for more time during the day where he's NOT hooked to a feeding pump. This is our playtime!
During PT this morning Christian was having tummy time on the ball and was face down. We were lifting his head for stretches and neck strengthening. If you let go of his gargantuan head, it usually plops right down just like a newborn. He even tends to throw it forward, which adds more force to the equation. Well today, while holding his head up, I let go and he slowly lowered his head and laid it down on the ball with the most head control I'd seen yet! It was very exciting. Christian also did some noticeable tracking. Not the "it's just in my head" tracking, but actual tracking. This happens when his eyes follow a toy or a light. I'm not sure he'll track to those boring miniature flash light the doctors always use, but he certainly responds to his bright yellow Spongebob.
It's also really exciting to see Christian so feisty. He wasn't all too cooperative in PT, but you could really see him "fighting" them with his little scowl and little growl if he didn't like something. He used to fight them with his tone sometimes, but he would really just lay there with no facial expression. Now you can really tell he's pissed and he's going to make sure everyone knows it. I love it! I don't care what emotion or communication he's showing. I'll take it.
I also spoke with the doctor's assistant today about possible discharge next week. He generically went over the discharge plan..."Well, the discharge plan is pending your [trach] training and long term health care coverage enrollment..."
So I said, "I've already been signed off on all my trach training and we're planning to get discharged using our primary insurance until it rolls over."
He said that sounded fine, he would confirm with the social worker - who's already on board with this - and we could commit to a discharge date. Sweet. If things go as planned, we should be discharged a week from Wednesday. Hallelujah!
The only thing I'm bummed about is the physical therapy. I spoke with the early intervention department (they schedule in home therapy for children with special needs) and she asked about how much therapy Christian is receiving. I told her five days a week and she told me not to expect that. It would probably only be more like once a week. Are you kidding me? So I told her that's fine, I'd use my primary insurance to pay for more. She kind of gave me the run around about how I could only use one or the other and blah blah blah. Budget cuts and more blah blah blah.
But, you know what...I'm not hearing her. I'm getting what my son needs and that's final. She suggested I just not tell the state run insurance that I'm using my primary insurance for supplemental therapy. Why is this such a big deal? Shouldn't the state be happy someone else is picking up the slack for their inadequacies and underfunding? I know this talk of insurance is just absolutely fascinating for you all but in my neck of the woods - pretty much every neck of the woods - this is called a clusterf*** and it's become part of my life. Am I going to cry about this? No. I don't understand it enough to cry about it. Am I going to get what I need for Christian? You betcha.
On another note, what I would like everyone that has to deal with us on a daily basis - more or less - to know is that our family has a new normal now. We are trying to take pieces of our old life and mesh it with pieces of our new life and it may not be what you expect or what you would even do if you were in our situation. But you aren't in our situation so you have no idea how it feels to have your child almost die and literally be brought back to life, not in one second, but over the span of many weeks, months, and years. I'm not going to ask for patience or understanding because this is the way it is so you are either along for the ride or you're not. If we fail to meet your expectations or fail to act the way you think we should act, I make no apologies. We're doing what we think is best for our children with the circumstances provided. We're doing the very best we know how to and that's all we can do. So welcome to our new normal.
Onward and upward.
Okay, I know I promised video, but I have had ABOUT ENOUGH of trying to upload video!!! It's driving me insane. I waited half an hour to upload on youtube only to be told there was an error. That's it! Pictures will just have to suffice and I'm equally proud of them. So here are some pictures of Christian during his physical therapy sessions. Upon admission, children are assigned therapy based on ability and potential to improve. When we arrived I asked specifically how much physical therapy was on the schedule for Christian and I was told 3-5 days a week, more if he responds and/or improves. The theory here is that if he improves, he gets more. If children do not show improvement, they get less. There is no reading into it. It's a crappy policy, but it is what it is. Well, he's shown so much improvement that he's on schedule for 5 days a week!
Bending knees to his chest. This is a chore because his tone makes him have very straight and tight legs.
And another picture just because I think he looks so damn good in this one.
On the way to HBOT in my big boy carseat, just Mommy and me.
So it's been a really great few days, especially because of all of the little developments that have been happening lately. Is it HBOT? I believe so but ask me in about 10 more treatments. Is it Christian's innate ability to recover? I'd have to answer with an emphatic ABSOLUTELY.
Good days, great progress, and home sweet home in sight. It's been a nice few days. And I found a really good caramel popcorn that is close to my favorite from Disneyland. Score.
Christian seems to have woken up a little in the past few days. He's been on his PMV pretty much nonstop for three days now. He's awesome. The RT said she was going to talk to his doctor to see if we could do some capping trials. Already?!?! At night Christian is a little wiggle worm with his arms. We also do some head exercises and relaxation techniques. The video I'm attempting to post will show some of his movement. Seriously, it's like a newborn baby. It may not seem like much to you, but he really has come a LONG way.
Like I said...stay tuned! Someday I'll get this uploaded!
We had the care plan meeting and…meh. It was really mediocre and generic. It felt like it was just part of the protocol. Like…check…we met with her. That’s off our list. I met with all the department heads – respiratory, physical therapy, nursing, and social services. The only one I’ve actually met before is the social worker. The rest I’ve never met and I’m pretty sure they’ve never met Christian. Great, even more helpful. They really just read off their notes that others had reported to them. It went a little something like this…
“So how is Christian’s sympathetic storming?” – Nurse I’ve never met
“He hasn’t stormed since he was in the hospital.” – Mama Bear
“And his seizures? – Nurse I’ve never met
“He doesn’t have seizures. That was ruled out in his first week of PICU.” – Mama Bear
“Oh, well it is common for those with brain injuries to have seizures or possibly have seizures in the future.” – Nurse I’ve never met that’s now irritating me because she obviously does not know and has not visited my son.
Okay, thanks for that piece of information. I felt like I ran the meeting. I know this probably isn’t how it always goes with parents, especially for parents who aren’t as involved. But I’m always here so I was updating them on his progress because their reports were not current at all.
Everyone else had no idea what they were talking about because they were reading from notes. Splendid. But what we did get out of the way is that all we need is the doctor’s okay for discharge and we are busting out of here the first week of September. Woohoo! And even better is that Hacienda will be making all of the arrangements for the medical equipment to be delivered to our house and ready for us when we get there.
As for Christian, he got a lot of therapy today and he did so well! The PT actually caught him trying to roll from side to back, intentionally…possibly, maybe. I say this because I know he can roll from side to back because when I place him on his side and he’s not tired, he tries to get onto his back. But I also thought that may be also due to his arch. But the PT said something about him leading with his shoulder which may show a more intentional roll. Yay, for Christian! I love my little sushi roll! We also always do head strengthening exercises before bed to wear him out a little. He was all over the place! His arms were moving, his head was moving. It took a few minutes for me to get him to settle down. And then when we were done, I held him in the rocking chair and he dozed off. I love how he does that when I hold him.
Gabe started his first day of trombone practice at school. He likes it so far! He’s played the guitar for over a year and now we’re trying something new. His lips and mouth were sore but he’s a trooper. I could tell he was excited because he was more talkative than usual, which is rare for an 11 year old boy. At least for my 11 year old boy. I can’t wait for his first recital. I’ll be a proud, embarrassing Mom with a camera and everything. And he’ll avoid me like the plague.
Oh yeah, and another big deal…Christian made it through 24 hours straight with the PMV. I’m happy to report that’s 24 hours and counting. We’re actually going for 48 hours now. And with no trouble. He’s really comfortable with it and last night, in my opinion, he did better with it on (with aerosol humidity trach mask) than without it. The RT asked if we had discussed capping. That’s the next step, which is closing off the trach completely and only opening it for suction purposes. After successful capping, we consider removal of the trach. All in due time. I’m not quite pushing it because I want to do it when Christian’s ready. No need to stress him out because that can effect recovery in other areas.
Remember, slow and steady wins the race.
So as not to waste a whole day, I spoke with the social worker about discharge and it looks like (fingers crossed) we're looking at the first week in September. I'm so excited! We just have to get all of our medical equipment ready for us in Tucson so it will be ready for us when we get there. I feel comfortable with that amount of time because I want to get some more therapy and HBOT in before we depart from Phoenix for good. I will keep everyone posted about our move back to Tucson because I will hardly be able to contain myself. The rest of my life is in Tucson and we will finally be back together as a family.
Christian is doing really well. The physical, occupational, and speech therapists have meetings and when I meet with them they'll say things like, "I heard in our meeting Christian is doing really well." It makes me all warm and fuzzy because as a mom you think everyone is behind your back saying "Oh, poor thing, it's really all in her head." To hear validation is so very sweet.
So the next 24 hours are pretty important. I will FINALLY have the meeting tomorrow (thanks for all of your prayers about today, I'll take them with me tomorrow). Christian will do his first night with his PMV. It will be his first 24 hours. And we have another swimming therapy session tomorrow. I WILL BRING MY CAMERA THIS TIME....AND I WON'T FORGET THE MEMORY CARD. Let me get that into my brain.
One of the comments on my last blog asked me what I'd like to be prayed for. To all of you who have prayed for Christian and had faith in him I endlessly thank you. Prayer works and if you don't believe me, I'll call you on the phone while Christian is coughing so you can hear just exactly what prayer can do. Do you all remember when I asked for prayers for a strong cough? It just gives me chills.
As for what to pray for next (as if I haven't already asked so much of your time for prayers) if you have a few moments to spare, please pray for his cry. I so badly want to hear it.
And just a closing thought -
"...That's what it means to have faith. There's stuff you don't know." - Joyce Mayer
Hindsight? Why do you have to be 20/20?
Coughing and gagging. These are things that I was told Christian didn’t have. These are also things I was told Christian might never have. Guess who coughs and gags? Christian. Guess who can clear his own throat? Christian. Guess who wishes she had been more assertive and demanded that the doctors try extubation before traching Christian? Christian’s mom. But coulda, shoulda, woulda. We don’t want to go down that road because I have a list starting with July 8, 2009. We can just go forward and Christian is showing that he can do this. This breathing thing. But I never doubted him. I always knew he could. So I’m not surprised that he does well on the PMV. All the RT’s are surprised and excited because they said some adults don’t do as well as Christian. I’m excited, I’m thankful, but not surprised. Now we go forward. Next step is PMV around the clock, then capping, then removing. That’s the plan.
Tomorrow is the Care Plan meeting for Christian. I’ve heard this is where they’ll tell me what they think of his progress or this is where they’ll tell me they’re discharge plan. I’m not sure what to expect, but I’m interested in what will be said and who made that decision that we had to come here.
I’m okay with staying for another 2 weeks, but no longer than that. I’ve met some unusual, interesting, haunting, and extraordinary patients, parents, staff, and volunteers. For the adults that live here that are severely disabled, they really try to keep their quality of life up and running. They do karaoke with volunteers, they hold pedicure parties (of which I was tempted to join), they bring in people with music groups to play music for the patients. It’s really God’s work – to do something for someone for the benefit of someone else. Some babies don’t get to be held. I won’t go into it, but they’re basically supported by machines. There are volunteers who come and hold these babies. They talk to them and tell them they miss them. There are joys and there are sorrows here and this place will change me forever. There are babies that exceed expectations here and babies who are rushed off to the emergency room in the middle of the night and don’t come back. If you ever consider volunteering, visit a place like this. It will be scary at first, but God will get you through it. How do you think we’re managing?
“I have faith that my son will walk, talk, and eat on his own again.” – A mom at Hacienda.
Amen to that.
We also went out to eat on Saturday night - Manny, Gabe, and I. It was nice going out to eat as a family, although we were missing Christian who had to stay behind. Before, we would always bring Christian and end up with a mountain of food underneath the highchair he was sitting in. He was loud and would scream at anyone who passed by, but it was a happy scream. More like a greeting. I can't wait until we can eat as a family again - all four (soon to be five) of us.
On Friday I took Christian to hyperbarics all by myself with no assistance. No RT and no driver. I felt really independent and Christian seemed to tolerate the trip while sitting in his big boy car seat. He promptly threw up while in that new big boy car seat, but we're used to it so it's not a big deal for either one of us anymore.
I have to mention that I've noticed a bit of a change in Christian over the last few days. He seems like he's more present lately. He seems a lot more energetic and he's been moving around a lot more with his arms to the point of knocking his pacifier out of his mouth and practically punching himself in the face. His whole goal, especially after a nap, is to get his fist to his mouth, and if he has to sacrifice his pacifier, his cheek, and now his trach (yikes!), he's willing to go the distance. It seems to lessen when he's at least got his pacifier in his mouth because then he's sucking on something. He's doing great with the PMV, in fact, he was coughing up a storm tonight. Not in an excessive way, but in a normal cough sounding way. Like he knew how to take care of business and then he was going to get on with life.
Christian also favors his right side so he tends to want to always look to the right or turn to the right. Well, he's started comfortably looking to the left. When I say comfortably I mean I don't have to aim his face to the left to get him to look there.
I've also been working with his head stability. A lot of it is for purposes of muscle memory and it's constant pulling his head up, letting it drop (gently), pulling it up again, and so on and so forth. I had him on my tummy doing this exercise and I actually got a few seconds of stability. You can see that he's trying, he's working, he's like the little engine that could. I tried to take a picture of him holding his head up (kind of) but, like I said, it was only a few seconds and the picture I snapped ended up being the wall and the back of his head. Exciting stuff.
On Tuesday I have Christian's "Care Plan Meeting" with the facility. What does this entail? No clue, but I'm hoping to get some answers. The first answer I'd like to have is who is holding us here? I don't mind being here. Christian is getting some good therapy and I'm learning a lot and I'm at peace with staying the 30-45 days I was told. But I've heard rumblings about having to stay longer because the insurance process is backed up. Excuse me? I won't go into the details quite yet, especially because I'm hoping to fill in the info gaps on Tuesday, but some people have had to stay months. Months?!?! As in plural? What do I need to do for that not to happen?
The reason I need to know who or what is holding us here is because I spoke with the long term insurance company - the one they told me that to qualify for coverage we had to come here - and they said they have no such requirement. Great. So who's requiring this? I just want to know who and I want to know why. Not all kids with trachs come here. If so, this place would be packed and it's not. It just doesn't make sense.
I am by no means trying to leave tomorrow, although if they said I could, I'd be tempted. There are things that are on order for Christian, things that need to be lined up, HBOT, etc. But I'd like to get to the bottom of things so that come the end of our stay, we can leave with no issues.
And when we get home we will be having the biggest, baddest, welcome home Superman birthday party we have ever thrown!
We have decided that the theme will be Superman (hence, the mention above). It is the most appropriate character we can think of that fits our little Christian.
He is our Superman. God has given him some super powers to live up to that name, but I know He's not done with those super powers yet.
I heard some whimpers. Were they on purpose or was air just escaping across the vocal cords? Who cares?! They happened. A couple of times. I seriously almost cried my eyes out. So whoever out there prayed for Christian's cry to come back, me thinks its on its way.
I held Christian for a while today. He seemed a little more...there. This is the feeling I had yesterday, too. He's been seeming more present. Sometimes I'm surprised by this because day in and day out I'm always looking for improvements - anything - and my patience, or lack there of, gets the best of me. I have to keep reminding myself to give it all to God. You know, people say that and sometimes it sounds easier than it is. To some it may sound preachy. But there is a beauty and a peace in giving your burdens over to God. You can only really control your own actions and choices and everything outside of that is not under our control. I believe God is still working. He's no where near done yet.
People often ask me if I've seen improvements yet. Of course I've seen improvements, but I'm not sure they're the improvements others are expecting - like maybe he'll just sit up, jump down off the bed, and yell for some juicey. Christian's improvements are as small as maybe, possibly, holding the weight of his head for just 3 seconds (which he did tonight). His accomplishments are focusing and making eye contact. His accomplishments are in slow motion. But they are so huge to me. I know it doesn't seem like it's a big deal. And I'm not only talking to "others" but also, in part, to myself. In the grand scheme of things, every little movement counts. They're building blocks creating a foundation for him to grow. This is going to take time. How much time? Who knows. But we owe it to him to be there every second of the way. And we owe it to him to believe he will continue to improve.
Belief is a funny thing. I think you either have it or you don't. In tragedy, those who thought they only believed in God, but not this, or not that, or some round about version of belief find that they are reaching down in the depths of their soul for any faith they have because there are times when faith is ALL you have to get you through. This is a weak explanation of what I've been through and what I'm still going through. But I see God's face when I see my son. I see His work. I see His beauty when I look at Christian. And for those who don't have faith, I feel sad because what do you lean on?
Okay, enough of my ramblings.
I am isolated. I can't get wifi in our room, otherwise I'd be online a lot more. I have to steal an hour or two during the day while Christian is sleeping or wait until almost midnight like right now. I can't wait to get back home. Didn't I say enough of my ramblings?
On to more important things...Christian is going to get fitted for elbow braces tomorrow. This will help keep his arm straight. Although, his arms are pretty loose. I'm hoping to talk to the ortho doctor about foot braces. And there have been a lot of people concerned about Christian's hands. I, too, was a bit concerned. The PT's haven't been all that proactive about his hands because you can get them open pretty easily. I made little dumbbells but I take them out when he takes a bath or goes swimming. He has wrist braces but he gets his little fingers out of them within 10 minutes. So I'm working with rolled up washcloths, makeshift dumbbells, and lots of massage and joint compression. The joint compression works so well! He loves it.
I also get to take Christian all by myself to hyperbarics tomorrow. I had to get a special order from the doctor to break out of prison for a day trip without supervision. Normally, they require transport with a driver and an RT. But tomorrow we're going at it alone. Am I nervous? Not at all. It feels more independent for us, which is what we're trying to get to.
Manny and Gabe are coming tomorrow to stay for the whole weekend! I know it won't be too much fun for Gabe but I'm excited to see him! Our life has changed so much and really won't ever be the same as it was. He's really been a little trooper and rolled with the punches without so much as a temper tantrum. That's not like Gabe, though. He's really accepting of most situations and adapts easily so he's focused on trying to get used to 6th grade. He seriously told me that he just needs to get elementary school over with so he can get on with his life. That was verbatim. He's kind of stoked because they have a class pet - a rabbit named Dusty. And nothing spells cool like animals in the classroom, hopping around during discussions of social studies and geometry.
I had an OB appointment today and Lola looks beautiful. I got another ultrasound picture and we got a really good shot of her big head and profile. Look like another big headed Shauna baby. And still a little sister for my boys.
I love my kiddos!
Christian hanging out in the pool.
Swim Time! Christian was so cute in his little swim shorts and t-shirt. The PT also put some sunglasses on him, which really weren't necessary because it was cloudy outside. I wasn't a fan of the sunglasses because you couldn't see his eyes and that's where you get most of his reaction. He smelled like sunscreen and chlorine...just like before. I love when little kids smell like sunscreen and chlorine. It reminds me of summer. Like I need to be reminded when it's 108 degrees outside.
Anyway, I didn't really know what to expect in the pool. That's probably why I made the mistake of wearing my valour lounge pants. It was hot to say the least but bearable. I got Christian ready, carried him down to the pool with camera in tow. When I got to the pool, I got my camera out, ready to take a zillion pictures and I FORGOT THE MEMORY CARD IN THE LAPTOP! UGH! Bad mommy moment. So all I have are these lousy quality pictures from my phone. Next time, I'll be more prepared.
Like I mentioned, I couldn't really tell what was going on with Christian because I couldn't see his eyes but the PT was able to get him standing in the water, with support of course. And when they finally gave up on the sunglasses, you could see that Christian was so relaxed. He loosened up in the pool and just floated. We're going to keep at this, maybe even a few times a week, if I can get it for him. He really seemed to be enjoying it and was so worn out that he fell right to sleep when we got back to the room. I just let him sleep naked in his diaper...just like before.
Christian also did really well in HBOT today. When he came out he was so loose but so alert and looking around. Today he lifted his legs! This is exciting because it's new. He didn't lift them in the way he does when he tightens them, that's different. He lifted his leg from the joint in a way he'd never done...almost on purpose.
I've also found a new position that he seems to love. He relaxes right into it.
And someone sent Christian some SUPER cute pajamas. I don't know who it was because the sender was a website. But whoever it was thank you so much! They are so appropriate for my little Superman!
"Me in my Superman pajamas!"
"Off to the rescue!"
(Tummy time stretch)
I love my little Superman!
Christian had over an hour straight of physical therapy. He was so relaxed. They had him laying on his tummy with his arms stretched over his head. And tomorrow....the day has come! Christian is going swimming!!! I will be attending this event with my camera in tow. I hope it awakens some of those little senses. We'll see how it goes.
Christian also had his PMV on for 8 hours today. He did really well with it except that he threw up while doing hyperbarics. Two weeks ago I would have freaked out about this but now it's a daily routine occurrence. And the people at HBOT were pretty cool about it, too. The whole throw up incidence was unrelated to his PMV, though. After he got out of the chamber, he was all alert and looking around. And I heard it...his voice! Not a squeal, his voice. It was a low sigh but it was his voice and it was the best sound ever.
He is resting from the PMV right now. It's hard work for him! But the RT's say he's doing great with it! And they were even surprised he went 8 hours with it on only his 2nd day because some babies can't even tolerate it for 2 minutes. Well, I had to explain that Christian is just an overachiever and they better get used to it because he's a superstar. No, I didn't say that, but I often feel like saying it.
I do have to say that taking Christian to HBOT is starting to feel like taking Christian to family. The manager is...intense, but she knows her stuff. Listening to her talk about hyperbarics, her charity, and other public functions she's been apart of is fascinating.
I also keep getting questions about Christian's brain and whether we've received an MRI. We did while we were in the PICU and it showed global damage, grey matter and the like. But his EEG showed close to brain death the night he was brought into the PICU and 12 hours later he had activity. Things change. But I'm not really interested in what an MRI has to say. It will say one of three things...1) Brain has improved. 2) Brain is still damaged. 3) Somewhere in between choices 1 and 2, mostly likely still closer to choice 2.It's weird but I'd rather not know. I can see what Christian is doing, and what he's capable of with my own eyes. We don't need another MRI to tell us his brain is injured. We know this. And I'd rather see what Christian is capable of rather than try to guess at what the future holds from an MRI.
Another specialist will be visiting Christian soon and that will be someone to test his vision. I believe Christian can see and can focus but his little brain is trying to make sense out of what he sees. So I think he has the ability to see but has trouble making sense out of what he's seeing, which may cause his vision to be impaired for a while. It's just a guess so we'll see if I'm right.
And the feeding issue...don't even get me started.
So everyone remember to kiss your babies tonight. If they wake up in the middle of the night crying out for you, please say a prayer thanking God for their little cry, and another prayer for Christian, too.
Another thing I heard was a light squeal. This is so exciting to me even if it's not technically hearing his "voice," it's the closest thing to it that I've heard for a month. And this is my latest struggle - responsiveness. It's difficult. That's what all the professionals want to know - does he respond? I don't know. I feel he responds when I'm talking to him but he doesn't turn his head toward me when I talk to him on his left side (he favors his right side and will turn to the right all the time). If other people are holding him and he hears me he seems like he responds. But I don't know if this is all in my head and I want to BELIEVE that or if he is actually doing it. That's as close as I get to responsiveness right now. I mean I look for responsiveness when I change his positions. I know how he's comfortable and he responds accordingly. He responds to my calming him. And I know how to make him happy.
He squealed. Do you know what that was like for me? I think I almost cried. I miss his voice. I miss him yelling and babbling and crying. The closest I get to his voice are long sighs and that squeal. And right now I'll take it because otherwise it's just silence. I'm really praying that one day, and one day soon, I'm going to hear that loud, boisterous voice again. I'd settle for a soft, little whisper at this point.
All of this longing for responsiveness has overshadowed how exciting the PMV trial was. It really is a big deal. The RT said it's a step toward having the trach removed and that if the doctors see this, they'll look toward removing the trach. This is all wonderful news. And I know that Christian's body is just learning how to work with his brain again. For example, as you've all seen and heard about, he's always trying to get his fist in his mouth. Well, he brings his fist to his mouth and makes sucking motions, but he doesn't know quite how to open his mouth wide enough to get his fist in. He's still trying to connect those dots. I suppose all this connecting takes so much effort, the emotionally responsive part of his brain isn't ready to emerge yet.
I know someday his brain will be ready. I still miss him, nonetheless. Everything in due time. Breathing and moving first, smiles, laughter, and crying will follow. All in God's time.
Praying for patience tonight.
Well, the doctor said he would discuss it with the speech therapist so the speech therapist visited today. She was different from the one I'd met before so I thought she was an aid. I had left Christian asleep and I am so so SO adamant about not waking him if he is sleeping because rest is conducive to brain injury recovery. And I'm especially ticked when they wake him for something like changing his diaper or taking vitals. All things that can wait until he wakes up! So I'm constantly running the aids out of the room and I thought she was one so I came up behind her and asked, "Did you wake him up?" in my most impatient way (I mean seriously, they just don't get it. I hung a sign by his bed and everything!). She looked totally blind sided. I felt really bad when she introduced herself as the speech therapist. I was embarrassed, but enough already with the determination to wake my kid up!
Anyway, on to the more important information...she said we'd try the PMV and she'd put in an order for it because he seems like a good candidate! Great! I thought that would take a few days since they have nothing here, ever, it seems. NOPE! He gets it today and as soon as he wakes up we're going to test it out! I'm so excited and so nervous. The PMV allows air in the trach but not out so it forces air up through to his mouth and nose. The speech therapist said he may not tolerate it and that's okay on his first try. If he doesn't quite vibe with it the first time we'll just keep trying. The respiratory therapist was a total advocate for PMV's and was so hyper and excited when he delivered it to the room and he said he really hopes it's on his shift!
So wish us luck and say a little prayer for Christian. As soon as he wakes up...it's go time!
Christian's doctor came to visit him yesterday and I had Christian lying on my bed. When he lies on my bed, he really relaxes rather than if he's just in his crib. The doctor remarked that he looked a lot better and a lot more relaxed than when he has previously seen him. I spoke to him about maybe doing continuous feeding over night so we can spread feedings out during the day. And, to my surprise, he was open to it! So we'll see how that works starting Monday. I also talked to him about the Passey Muir Valve (thanks for the suggestions ladies, now I have street cred ;) ) and he said he'd speak with the speech therapist to see if Christian was ready for that yet. I love receptiveness!!!
So in the last 24 hours Manny, the PT, and the doctor said Christian is looking and doing much better. Sometimes it's hard for me to see because I'm with him every waking minute (and I wouldn't have it any other way.) But it's nice to hear from others because I'm so proud of him. I literally put my blood, sweat, and tears into him (maybe not blood, replace blood with more tears). I'm so determined to give him strength so he can have the best environment to recover. Recovery will be long and hard but I want to make sure he has an atmosphere that promotes healing and makes it easier for this little boy who will have a difficult time. I have never felt as passionate about something as I do about my children. I could go on but I'll spare you. The point is that I only loosely understood the phrase, "be your child's best advocate," until now.
We are willing to do whatever it takes to help Christian's recovery. That's why we aren't letting expense stand in the way of our mission - get Christian well! But you really don't realize how expensive treatments are until you actually start spending the money. But luckily, we were able to take care of his HBOT sessions in Phoenix until right around when we leave. SO THANK YOU TO THOSE WHO HAVE DONATED. This is why we were able to do this so soon after his accident and I'm forever grateful to you. As for his HBOT treatments in Tucson...we'll cross that bridge when we get there but I don't care what we have to do, we're doing it.
It's a funny thing about Christian. His cough is becoming stronger and more frequent. It just makes me think about all those doctors saying he may never get a cough and that's why he needed the trach. I heard about a cap you can put on the trach which allows less air past the trach so that more is forced through the nose and mouth. It also will help him vocalize if he chooses. And then if he does well on that, we can cap the trach. I want to start as soon as possible so he doesn't get used to breathing with the trach but I have to wait until we get to Tucson because I'm not intending to commit to any doctors here unless I fall in love with them.
It also looks like we are getting qualified for therapy home visits, but I told the early intervention program representative that I didn't care if I had to drive him somewhere, as long as he gets what he needs. But the fact that they're coming to our house is so much more convenient.
Daddy's coming tonight!!!! I can't wait. He's bringing lots of toys and goodies on his sleigh! I don't know why that song popped in my head. But apparently Christian has received quite a few packages that wonderful people have sent to him. And, I think Daddy might also have some Mexican candy for me. Yay! It's an Arizona thing.
And to all those individuals who have made it possible for us to do HBOT, continue HBOT, pay for additional medical expenses, and additional medical treatments, there are just no words to describe how I feel about you guys. God has brought you into our lives and we hope we are able to pass on the grace and generosity you have given to us.
Christian is doing really well. Well, let me backtrack…he did throw up quite a bit last night. It’s not a violent throw up, in fact, I would liken it to a heavy spit up. So I had a rather sleepless night. He was agitated by something, his heart rate was fast and his stomach probably hurt from these near continuous feedings they keep prescribing for him. I finally told the nurse, after cleaning up his bed three or four times, just to hold his next feeding so he could have a rest. And, waddya know, he felt better and stopped throwing up. Mama was still tired all morning, though. Christian was tired, too.
It was Christian’s first trip to the therapy room. This room has all the fancy tools that will help him get back into action. They usually do therapy in his room, but there is a lot more in the therapy room they can work with. The only thing was that Christian was tired from the throwing up and lack of sleep at night, so he just wanted to sleep.
The therapists have been talking to me about allowing him to go in the pool for water therapy. They were really careful about asking me in light of the accident. But I told them I think it’s a good idea. Christian loved the water and he wasn’t ever afraid of a single drop of it. Salt water, pool water, bath water, he loved it all. So if going to the water awakens any kind of sensations or memory tied to his love for water, I say go for it. It might be hard to watch and I don’t know what kind of emotions it might bring out but, man, that kid had so much joy when he was splashing and kicking in the pool. And that’s what I have to hold on to. Christian will have his water therapy next Wednesday.
I also met Christian’s “doctor” today. Yup, I don’t like him, just as I suspected. I asked him about adjusting his feedings gradually and I won’t go into all the boring details of milliliters and the like but whatever I suggested, he basically told me no. Wait, not basically, he told me NO. He said my suggestion wouldn’t give him enough calories to put on weight. Um, have you looked at the kid, doc? He looks like a two year old. I highly doubt loosing a few ounces at most over a trial of a few days is going to leave him lacking in nutrition. He also suggested fundoplication if Christian can’t tolerate feedings. This is when they surgically tighten the top of the stomach to prevent acid reflux and throwing up. That would have been fine and dandy had they given him this procedure when they gave him the other surgical procedures. But now to have him have ANOTHER surgical procedure because you don’t want to bother with taking the time to figure out what’s going to settle with Christian is unacceptable. I’ll control the feedings without the doctor knowing if I have to…tell me no.
Christian had another round of HBOT today. It went well, he did great in the van ride over again! While on our excursions, we put a little tube on his trach. It looks like a bow tie and keeps his air humidified and also always allows an open airway, even if his head falls forward on top of it. Well, while in the chamber today, Christian got a little “snorkely” and would normally need to be suctioned. But, instead, he coughed so hard he blew the “bow tie” right off his trach! I have a feeling the trach won’t be around for too long.
The speech therapist was really happy with Christian’s progress, as well. She even remarked that he looked so much better than Friday, which is when she last saw him. She gave me some exercises to do with his lips and mouth. I asked her about allowing different flavors on his tongue, as suggested by a friend of mine, Rochelle, who went through the same thing with her daughter. She said to try a little flavored toothpaste for now just to wake up those senses.
I think back at all the things that we were told by the doctors and nurses. Things like, “He may not ever come off the vent.” And a few days later he was off the vent. Christian is capable of so many things it blows my mind. It’s like he heard what the doctors were saying and he decided that he would personally make sure he would meet their challenges. So he’s heard them say he may never eat by mouth and his sucking and swallowing are getting stronger and more frequent every day. He heard them say he had no cough and he’s coughing hard enough to blow things off of or out of his trach. I know he’s going to keep going. He is such an amazing little boy.
Oh yeah, the tiny baby down the hall is okay and so is the baby we room with. Just thought I’d let you guys know.
Above are all words I would use to describe this day. First I woke up to Christian throwing up a little bit. That's fine, we're use to that. I hurried to get his suction catheter together, which was hard with sleep still in my eyes, but I was managing. As I'm fumbling around to put on my gloves I hear coughing...I hear two big, powerful coughs!!! This is gross, but Christian coughed the phlegm right out of his trach tube! And he cleared his own throat. When I was finally ready to suction, he was already done with it. I know you are all throwing up right now but I've never been more proud of phlegm expulsion in my life! And what's better is that he did it again later in the day. It was such a powerful cough I thought it was a sneeze. Couldn't have been, though, because I would think that would have gone through his nose and this originated from his chest. It even sounded like a real cough. Awww, bodily functions.
I worked with Christian so much today. And when I wasn't working with him, the occupational therapist came in and worked with him. We bent both legs all the way up, he was so much looser, he was just doing so well! I gave him a bath, which honestly, is like an hour long process. We're talking the actual bath, trach care, gtube care, finger nails, mouth care, lotion and massage, and we're finally done. Then we had a visit from Gramma and Grampa, more occupational therapy, and off to HBOT! What's the difference between physical therapy and occupational therapy? I asked the same thing. Physical therapy, as it was explained to me, is more movement and joint related with the larger muscle groups. Occupational therapy involves range of motion integrated with sensory objects. In infants they really work hand in hand. The Occupational Therapist is really loving, she's like every one's talkative next door neighbor. She also explained that most of the children here don't have parents that stay with them or even visit. So she said she won't be kissing on Christian as much, since he has a mommy and the others need those kisses because they don't get any love. Poor babies.
So then we get to HBOT. Talk about drama! This is the deal...it was required that I have a driver and a respiratory therapist accompany Christian. They were both really nice and talkative. The RT has a really strong personality. The problem is so does the HBOT director. They butt heads left and right. The RT had questions about suction and what if Christian is in distress, how long will it take to decompress? Can she suction? Is there suction available? Can he go in with Christian? All this because I can't go in with him because I'm pregnant. The director of HBOT said it's okay after the 1st trimester but nobody REALLY knows for sure. So Manny just said if someone else is there to do it, let them. So that leaves the director, who's done it before, and the RT. The RT said he was going to go in with Christian. The director said, "Nope, not today. I need paperwork on you and we don't have time for that."
Then the RT said something back, then she said something back to him...it was awkward and kind of funny. All of this because she was late and flustered. So in the end, the RT will go in with him after his paperwork is done. The director went in with him this time. While they're in the chamber, I can see what's going on through a small screen that's watching everything. The director was stretching and massaging his legs and arms and he was as cool as a cucumber. I know people are curious as to what this chamber looks like. It looks like a submarine with a TV in it. Whatever gets the job done. I was secretly happy my RT and driver were there because they were both REALLY concerned about the welfare of Christian. I was thinking, "Holy crap! These people really care about my baby!" It was a nice feeling to know that they were looking out for him.
I was initially really nervous about the transport. Last time Christian traveled it was from Tucson to Phoenix in an ambulance. He was so aggravated and warm that I wasn't looking forward to another transport. But he did great! We put a little cap on his trach that allows him to breath humidified air but still be picked up and carried around. He rode in a stroller to the transport van and it was like carrying around my Christian again. It was so...normal. He was strapped in to his car seat like a big boy and fell asleep on the way there. He did really well in the chamber with no issues and was completely relaxed. He then fell asleep in his car seat on the way back. When we got back into the room, he was still so relaxed. I hooked him up to his pulse ox monitor and his heart rate awake was in the 120-130's! He's usually in the 150's awake. I don't know if one session of HBOT can relax him so much but all I know is that I had a happy baby after all was said and done. Back again tomorrow!
I also spoke with the speech therapist who came in and said she heard Christian was doing really well in their meeting. She said he looked a lot more relaxed and said that the sucking motions were really good signs! Yay! Let's hear it for positive reinforcement! Christian is even stimulated to suck when I put the suction catheter in his mouth to suck out the extra drool. So there's a lot of mouth movement going on which pleases me to know end!
Christian doesn't do anything emotional yet. He doesn't make facial expressions. He doesn't cry or vocalize and I don't know if it has to do with his trach, I'm not jumping to that conclusion quite yet because he hasn't made any attempts to do these things. And this part is hard because it's the part that makes Christian who he is. But I know this is coming, I just have to have patience. Nothing is going to happen overnight. It's on God's time and Christian's time.
Despite not getting any emotional response, I can say that it's really starting to feel like I'm getting my Christian back a little bit at a time. The emotional part will come later. I was able to pick him up today, put him in a stroller, stroll him around, and strap him in his car seat. All of these mundane things used to be part of going through the motions. Now, everything I do with him is a gift. Even being able to put my baby, wireless, in a stroller and walk him outside in the sun and then strap in a car seat, comfortably, are so huge that I can't even explain it. To watch him fall asleep in his car seat as if nothing had ever changed took my breath away.
Today was BUSY! Gabe started school today and needed an extra two shots! Yikes! And they hurt him really bad but he was able to suck it up to look cool for his first day.
Christian was such a superstar today. He was so loose and able to move. The occupational therapist worked with his arms and said he was coming right out of his locking up. His back wasn't as arched and with support to his head and neck, he's able to sit straight up. He really loves that position, too. His little eyes look around and his heart rate drops so I know he's comfortable. I even caught him moving his foot up and down and not in response to his tensing up. He was just moving it back and forth and following it with his toes. These little things that his body does I always took for granted before, but now they're little celebrations. I celebrate every twitch and move he makes, whether on purpose or by accident because it means the brain is waking up and making connections no matter how small.
I've also been working on Christian's oral stimulation. He's been making sucking motions more and more frequently and some are so strong, you can here him smacking away in there. So, I think I've mentioned that the speech therapist said to work on his oral stimulation with a pacifier. This is important because those muscles in his mouth will help him speak one day. The sucking and swallowing will help him learn to eat by mouth again. And he doesn't want to miss Daddy's cooking, absolutely not. So this is something I wanted to jump on. He didn't respond to the pacifier they had here so I brought one from home. The one from home seemed more conducive to his sucking reflex just by it's shape - it's narrow and then bubbles out like a ball at the end rather than just a straight nipple.
Well, I was able to maneuver the pacifier past his teeth and into his mouth and wouldn't you know it he sucked on it! And quite a few times! He did take a pacifier when he was about 2 months to about 6 months. Then he spit it out. But the point is that pacifiers are not foreign to him. Was it a coincidence - the pacifier was in his mouth while he was practicing his sucking reflex? Who cares?! He was stimulated and responded, whether by accident or on purpose, he responded. And I tried to take the pacifier out of his mouth slowly to see what he would do and responded to that by sucking again! Daddy better start cooking, because we are on our way!
I'm finally comfortable here at our new digs. Would I take Christian and leave if they told me we could? In a heartbeat. Honestly, I couldn't stand this place and I could write a whole separate blog about it. But I won't. I've decided to accept and embrace this place. I've made our little corner of our room into a miniature apartment. We decorated the heck out of Christian's crib, we have food, entertainment, and we've made it ours. I've taken over all of his care, accept at night so I can sleep. And that's only for his feedings, which are every two hours. I administer his medication, bathe him, and I do his trach care. I change his positions, do range of motion exercises, mouth care, suction, and calm him if he's agitated, which isn't as much anymore. I also put him to sleep, which is a great joy of mine because I know he's responding to something I'm doing, whether it's rocking him, putting him in a position he's comfortable in, or turning on the mobile he likes. So now I look at this place as a blessing. It's a blessing because I've relearned how to take care of Christian and I know him again.
I was also thinking that if I am weepy and upset about this place, who will be strong for Christian? He already has such a struggle, I need to be his strength. I need to be strong for him so he can fly. And I can't very well be strong if I'm waking up thinking about how much it sucks to be here.
So I have a new perspective. We're here for Christian. We will make the best of it and because of this place I have become a better mother and a stronger mother. God will see us through...I know He's not done with us. These situations really show you what you're made of and you have to reach down into the depths of your soul for strength and faith you didn't even know you had. I'm not special. I'm not stronger than anybody else. I'm just doing what I have to do and at times that's meant relying on faith and faith alone when nobody else believed.
I haven't met Christian's new "doctor." I put doctor in quotes because I'm not sure what kind of doctor he is. Pediatric? Special needs? What? I just know that I looked over his notes and I already don't like him. Just scribbles of severe anoxic brain injury...blah blah blah. I don't want to know your opinion, I don't want to hear the text book term, I don't care what your drive by assessment is. Know why? Because I see his progress with my own eyes and you don't even know him. Get away. Why does opposition make me so feisty? But keep opposing us because it just makes me have even more faith in my boy, "Doctor." I'm really on a mission to find professionals that BELIEVE Christian will recover and succeed. Otherwise, I don't have time for you.
Okay, don't let me get up on my soapbox.
Tomorrow we have our first HBOT treatment! Yipee! The clinical coordinator almost gave me a hard time and had to check to see if they could "accommodate" me. I didn't get crazy with her just yet because I wanted to see if she could make it happen. Well, she did so I didn't have to go all mama bear on her.
It will be a big day tomorrow so please send us positive oxygenated thoughts and prayers!
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