Wednesday, December 25, 2013
Monday, December 16, 2013
The last week has been a rough one for Jack. While honesty has always been my motto, I have to admit, it's difficult to share the details of this part of the journey. I can easily talk about what is going on with Jack, but writing it down isn't so easy. You would think that living it every day would make it real enough, but documenting it means I can't take it back, I can't ignore it, I can't see only what I want to believe. Transitioning Jack to hospice came with the realization that Jack is going to die someday. But, someday was just a day out there, somewhere off in the distance - a day I didn't want to focus on.
What I love about Jack's neurologist more than anything is that she doesn't limit her conversation to just medical information. We know each other well enough to talk about God and heaven and how Jack will be okay no matter what. And he will be.
Friday, December 06, 2013
Tuesday, November 19, 2013
Once again, I'm remiss in updating the blog. Most of my updating takes place on Facebook - it's quick and easy to update.
Jack has had a run of mostly good days. He's been feeling and looking better than he has since we transitioned him to hospice. Which means ... we have his pain under control. He's getting a decent amount of morphine round the clock and it seems to be working. It's not to say there haven't been some rough days. After one particularly difficult day, Jack ended up sleeping for almost 24 hours straight. It scared me. If I had to describe what this "ride" is like, it is very much like those first months of Jack's life when he lived in the pediatric intensive care unit. The intensity and stress of the unknown on any given day is much the same. What's different is that I'm 15 years older and much more worn down. I don't have the stamina for this. I seriously worry about my own health these days.
I want to comment on my post before the birthday post. I realized after the fact how very raw my words were. At the time I wrote it, I just sat down and let the words flow. Interestingly, I heard from several moms who told me that they could relate to much of what I wrote because of what they are dealing with in their own lives with their children, but they hadn't yet been able to put their feeling into words. I spoke for them as much as for myself. And that is why I write, and why I keep it brutally honest most of the time. I speak from a place that very few can understand, but for those who do, there is a connection that reaches across the miles and forms an inexplicable bond between people who've never even met in person.
Despite Jack's run of good days, I'm still beyond tired because of the round-the-clock meds we have to give him. So, this update is going to be short and sweet.
The sweet part is that we had family pictures taken last weekend and, thankfully, Jack had a good day. I think the pictures turned out great. For those not on FB, here are a few of the pictures and at the end of this post is a link to the album of pictures (which will only be available online for a short time).
Stay tuned ... I have another very raw blog thought just waiting to be written.
Monday, November 04, 2013
Monday, October 28, 2013
Clearly, I struggle to update the blog. Part of me feels like it's the same thing, different day, so what is there really to share. But, the reality is, our days are anything but consistent. This leg of the journey is not linear. There are many ups and downs. There is baseline, a rough patch, a new baseline, and repeat. And so it will continue until the end.
The end. Isn't that really what we all want to know? When will this end? I certainly do. Not because I want this to end. No parent wants to lose their child. But, as Jack's neurologist reminded me when I asked her to please help me get past having to know the why of what is going on with Jack ..... we know the why. Jack has a progressive neuromuscular disease. Not a new revelation by any means, but also not something that I've focused much on over the years. Other than the fact that Jack's disease has never allowed him to walk, talk, eat or breathe on his own, he has never been a chronically sick kid. For the most part, we just accepted (okay - more like, adapted to) his limitations and moved on with living life the best we could. In other words, his disease was mostly a non-issue.
Obviously, that is no longer the case.
So where are we at this point in time? After a very rough evening last week and an after hours call to the hospice team, we've now increased Jack's morphine dose yet again and he's now getting it every four hours around the clock. No more stretch between the midnight and 8 am dose. Getting up to give the 4 am dose is brutal. Mark and I flip a coin to decide who has to get up. Not really. We're actually pretty good about divvying up the job so that we are equally tired. That's only fair, don't you think?
It's important for you to know that when Jack is not in pain, he looks good. He smiles and he's engaged. It's not all doom and gloom. However, when breakthrough pain takes over - it's a challenge to get a handle on it. It's heartbreaking to see Jack suffer. But, the fact is, Jack isn't going to die from pain, so, in theory, this insanity can go on for a very long time. Which brings us back to the question of, when will this end?
I haven't a clue. No one does. I think it's safe to say that it's not anytime soon. It could be months, it could be a year. We will continue to deal with ups and downs and pain management issues. But, there will ultimately come a time in this journey when exceptionally difficult decisions will have to be made. Quality of life and end of life decisions are very personal and very private decisions. But, I'm confident that when Jack has had enough, he will let us know. As Jack's mom, there will be no happy ending to this journey. But, I unequivocally believe in God and in heaven, and I take great comfort in knowing that when Jack is ready to go - he will be going to a most amazing place. I believe he knows that too.
In the meantime, we cherish him, we comfort him and we love him. And, I will do my very best to continue to share him with all of you.
Monday, October 14, 2013
An update is in order, but this will be a short one. I've spent the last two weekends traveling and I'm exhausted. I know - you don't feel one bit sorry for me. That's okay. But, as much as I enjoyed the amazing weekend with my sorority sisters at Coronado Island and the time we spent in New Jersey/NYC celebrating my niece's wedding, my sweet Jack was having a very rough time back home. The stress of being away from him when he is hurting cancels out the fun. Not that I regret taking the time away. It's just not as fun and exciting as you might think.
It wasn't that long ago when I could say that Jack was having good days and bad days. Now, it's more like Jack is having good times and bad times in a given day. Jack isn't having any "good" days anymore. We've now added continuous oxygen and Ativan to the mix. I still struggle with wanting to know why? The one thing Jack's doctor assured me of when we decided to transition him to hospice was that I could still pursue testing and treatment if I wanted to. At this point, I need to know why his pain is increasing instead of staying the status quo. Even if we choose to do nothing once we have the information, I still need information. I'm a detailed oriented, need to know kind of person. Based on Jack's symptoms, I would like to have some blood work done, at a minimum. It's possible that we won't know any more than we know right now after doing the tests. But, I'd at least feel better knowing that we aren't dealing with something obvious and treatable that is causing Jack to be so uncomfortable. I'm hoping to hear back from Jack's doctor tomorrow. As much as there are upsides to being on hospice, I'm also discovering that access to certain things is subject to hurdles that I didn't have to deal with in the past. It's very frustrating and makes life more difficult at times. And the last thing I need is for life to be more difficult right now.
I could go on, but being negative just creates negative energy which saps what little bit of positive (and productive) energy I have left. At the end of the day, all of the people in Jack's life care about him and want to help. I'm overly tired, sensitive and emotional. All we can do is press on. One day at a time.
I want to share pictures of my very special weekend with my very special friends for those who aren't on Facebook, but I'm too tired tonight. I'll try and post pictures tomorrow, but in the meantime, here is my favorite picture of the weekend - this pretty much sums it up.
Friday, October 04, 2013
Jack is doing okay. Despite my conviction to cease my "need to wean", I still tried to space out the time between Jack's doses of morphine just a little bit. But, Jack wasn't having it. So, it's now written in stone - well, actually, it's written on a piece of paper in Jack's bathroom, that Jack is to get his morphine every 4 hours. No matter what. Except, between the hours of midnight and 8am, because it's helpful if we get some sleep. For that 8 hour span, we give Jack a higher dose and, so far, our schedule seems to be working. And, I'm done messing with it. Really, I am.
This week has been the first calm week in what seems like forever. We've have consistency with morphine and consistency with nursing and Jack is having mostly good days. He's not on such a high dose of morphine that he's out of it. Although, you can't be on morphine and not be somewhat affected.
This week was also a week of connecting with people who've cared for Jack at St. Louis Children's. For the first time ever, Jack is having skin breakdown around his trach stoma (for my non-trach friends, the stoma is the hole in the neck where the trach tube is inserted). The trach tube has created a sore in his neck that is above the stoma. The sore is a ridge in the skin and the trach tube now pulls up and sits in the ridge. I have a picture I could share, but it might be too much information for most of you. I emailed the trach nurse at St. Louis Children's on Sunday night and I received a call from her by noon on Monday. Have I told you how much I love SLCH? She gave me some suggestions and said that what we are seeing is not unusual for a kid who has had a trach as long as Jack has. It was great to talk with her and to catch her up on what is going on with Jack.
I also sent an email to Jack's former St. Louis pulmonologist, who is now practicing in Florida, to give her an update on Jack. When she emailed me back, she shared this with me:
"Give him a hug for me and know that I am thinking of all of you. I see him every day as I keep a picture of him on my office door."
Totally made me tear up. And, I know that she isn't the only former doctor of Jack's who has his picture on their office wall. It so comforting to me that the people who cared for Jack so many years ago still think about him and hold him dear to their hearts. That's what is missing here. The doctors here have never connected with Jack - or me. I get why, for the most part (although, that doesn't excuse this).
Last year, when Jack was inpatient at PCH, I was discussing this lack of connection with another one of Jack's former SLCH doctors and, as I explained to him:
"You have to remember that the connection I have with you and several other of Jack’s doctors is based, first and foremost, on your connection with Jack. The doctors we encounter here at PCH don’t feel any connection to Jack. Jack is not that cute little baby that everyone fell in love with 13 years ago. It’s not that the people here at PCH are not good people, it’s just human nature to be attracted to babies, not 13 year olds with neuromuscular diseases."
Anyway, it doesn't really matter at this point. The fact is, those doctors and nurses who connected with Jack so many years ago in St. Louis still feel connected and they still care. At this point in the journey, I probably need them more than Jack does and, thankfully, they are still showing up for both of us.
Speaking of connections, bright and early tomorrow morning, I'm hopping on a plane bound for San Diego. I'm spending the weekend with three of my sorority sisters who I connected with online many years ago. All of our kids are trach kids and three of us are bloggers. This will be the first time we meet each other in person (except for me and my friend Sarah - we worked together on the TouchStones program at CHOC). I'm looking forward to a weekend of respite and relaxation on the beach and a weekend of making memories with some wonderful ladies. I know the minute we see each other and start talking, it will be like we've known each other for years. Because, well, I guess we have.
If you are on Facebook, you'll no doubt see pictures. For everyone else, stay tuned.
Friday, September 20, 2013
When you are the parent of a technology dependent child, your focus very early in the journey (when you don't have a diagnosis and you still have hope) is to do everything in your power to get rid of the technology. You get in "wean mode". I spent the better part of the first three years of Jack's life trying to get him off the ventilator. The longest he could ever go off the vent was about an eight hour stretch. In retrospect, he should never have been off the vent that long - or at all. But, being the goal oriented, task master that I was, I wasn't going to cut the poor kid any slack and he gave it his all during those times he was breathing on his own off the vent. If he could have talked, he no doubt would have told me to give him back the damn vent. If he could have moved, he no doubt would have grabbed the vent circuits and hooked himself back up.
Even after I accepted that Jack wouldn't ever get off the vent, I still couldn't get out of wean mode. If I couldn't get him off the vent completely, then I was at least going to work on weaning down the amount of support he needed. He didn't get very far.
When Jack would get sick and require increased vent settings and supplemental oxygen, all I could focus on was getting the vent settings back down to his baseline and getting rid of the oxygen. Until recently, Jack has never been on routine meds. My emphasis has always been "less is more". My need to wean was never meant to torture Jack, but to have something to work towards. All parents want to see their kids make progress, it's what gives us a sense of purpose and accomplishment. It's what gives us hope. Despite Jack's ultimate diagnosis and lack of progress, I continued to wean and to push because I still had hope. Hope - it's a funny thing.
Getting out of wean mode is a process. It takes time. And that brings me to where I am today and Jack's need for morphine. Initially, Jack needed a high dose of morphine around the clock to control his pain and allow his body to rest. Eventually, wean mode kicked in and I tried to get Jack down to morphine on a PRN basis. The problem with that was, when the pain comes, it hits hard and Jack ends up in respiratory distress before the morphine can kick in. We went to scheduled morphine every four hours. Jack did well. So, of course, what am I thinking? Wean down to every six hours or maybe he can make it to every eight hours. I know this sounds crazy to most of you, but all I can say is, it goes back to feeling like you are making progress and with progress, comes hope.
The bottom line is, Jack needs morphine on a scheduled basis and he needs it more often than every eight hours. This is what he is telling us. I need to be a better listener and I need to change my way of thinking. Letting go of the "need to wean" mentality is hard to do. But, I need to do it for Jack. Forget progress, forget hope, forget a sense of purpose or accomplishment. It comes down to what will make Jack comfortable.
As my friend, who is one of the docs on my support team, recently shared with me about weaning Jack's morphine:
" ... could not agree more with getting away from weaning as victory. Victory over what? The disease? We will all have to let our kids with CMD go gently into the night though we have spent the better part of our lives making every effort to do just the opposite - attempt to defy progression, make small concessions but not without a fight and go down paths with no right answer . . . "
And she is absolutely right and I love her for her honesty. I can't say enough how blessed I am to have the most amazing people guiding me and supporting me in this leg of the journey.
I'll close by saying to all of you, despite the tone of this post - don't be sad. Jack's pain is controlled and he is doing well. When he isn't hurting, he is happy. He really is so easy to please - "Give me my vent and give me my morphine and life is good, Mom."
Okay Jack, you can have your vent and you can have your morphine.
(for those who are wondering, the tube going to Jack's trach is not a vent circuit, it's hooked to a compressor that is delivering humidified air. Jack is breathing on his own in these pictures)
Thursday, September 12, 2013
So we are two weeks on hospice and I think it's fair to say that Jack is doing much better than his mother. Then again, he has unfettered access to morphine and, well ... I do not.
Jack is doing better. Being able to control his pain and allowing his body to rest has really helped bring him back from that far off place he escaped to when he was trying to deal with the pain. He is much more alert and attentive these days and is even sharing smiles on occasion. I've been able to wean his morphine down from the maximum dose every four hours around the clock to PRN with a lower dose. However, every time I think I might have him weaned down to needing no morphine, he lets me know that is not the case. He's still needing it a couple of times a day. The million dollar question is why? I've slept very little the last two weeks because I'm relentlessly haunted by the "what ifs". What if we are missing something obvious? What if whatever is causing Jack's pain is a simple thing that can easily be treated? What if he was being seen by his St. Louis doctors instead of the doctors here?
This, my friends, is where faith comes into play. Despite all the "what ifs", my gut tells me that the decision to transition Jack to hospice is the right one. And, I believe with all my heart that my "gut" is God driven. If I can't believe that, then I've got nothing to go on and I desperately need something to go on.
Being on hospice does come with a few perks. For one, the coveted morphine is delivered right to your door - no trips to the pharmacy in the middle of the night required. Your hospice doctor also makes house calls. I had scheduled an appointment with Jack's pediatrician/palliative care doctor awhile ago, but because Jack is on hospice, she came to the house yesterday - along with the hospice nurse and the social worker. A bit overwhelming, but also much appreciated and welcomed. It's a bit of an adjustment to get used to so many people being there for you. I mean really being there - in person, for you. It's uncomfortable and good all at the same time.
As for me, I used to think I had a pretty good handle on juggling the whole medically complex kid + regular kids + working full-time thing. Not so much anymore. I completely forgot Eric's parent-teacher conference last week. But, all I had to do was throw out the "Eric's brother was transitioned to hospice" line and it was all good. Another perk of being on hospice - people cut you a lot of slack. And lately, I've needed to be cut a lot of slack because I'm missing a tremendous amount of work due to lack of nursing coverage. The upside to the lack of nursing is that I'm getting to spend a lot of time with Jack - just mom and Jack time. It's been nice ... and a lot of work. It's been years since I've done a trach change, changed out the vent circuits and other equipment that needs to be changed out every few weeks or even given Jack a bath, because his nurses usually do those things. But, I so appreciate this time I'm getting to spend with Jack that I otherwise wouldn't have. Life has a way of working out how it's supposed to, even if it doesn't seem like it at the time.
Mark has been out of town all week and won't be home until late Sunday, and, as much as I appreciate all the quality time I'm getting with Jack, I'm in desperate need of some sleep. So, Jack and I will be heading to Ryan House this weekend where I can sleep and he can get the love and attention he deserves.
Well, that's the update from here. Sorry for the long break in blog posts. It's difficult to put all that I'm feeling and thinking into words, especially when I'm so darn tired. Most days, I seriously have to remind myself to BREATHE. I do feel like Jack is in a stable place at the moment. We are able to control his pain without snowing him - I'll take that. One day at a time.
Just some pictures of Jack .... Just because.
Monday, September 02, 2013
Thursday, August 29, 2013
My son recently came under your care. He was the "14 y/o male, dx muscular dystrophy". He was the child in the wheelchair, trached and vented, with the contracted limbs and the drool cloth under his chin because he can no longer swallow. He was the child staring off into space, lost in a sea of pain.
Next time, walk into the room and talk to me. I understand doctor speak and, yes, I'm going to ask pointed and tough questions. I don't expect you to have all the answers or fix all that is broken with my son. But, when it's time for me to make difficult decisions regarding my son's course of treatment, I need to know I'm talking to the physician with the most experience. I need to know I've asked all the questions, received expert answers and have left no stone unturned. I need to know I am making an informed decision. After fourteen years of living in the medical trenches, I've earned the right to your presence. I've earned the right to ask you questions and question your answers. Respect that right.
Next time, walk into the room and touch my son. Put a stethoscope to his chest. Examine him. After fourteen years of living with a disease that has stolen everything from him but his spirit, he has earned the right to your presence. He's earned the right to your touch, your eyes, your ears, your experience and, I dare say, your heart. Respect that right.
Tuesday, August 27, 2013
At the time we transitioned Jack to a palliative care doctor last November, we were given a script for morphine. Since November, we've had to give Jack morphine here and there because of pain, but he's not needed it on a routine basis. For the past few days, Jack has been in significant pain. His heart rate is high and his sats are low enough to require supplemental oxygen. As we always do when his sats are low, we approach it first as if it might be a respiratory issue. We give repeated rounds of the Vest , breathing treatments and extra suctioning. When that doesn't resolve the problem, we know the low sats are pain related. I gave Jack the morphine in the amount and frequency as written. He got minimal relief. I decided to sleep with Jack last night so that I could keep an eye on him. As I lay next to him watching him struggle to close his eyes and get comfortable, it was killing me because I just didn't know why he was hurting. After watching him for awhile, I couldn't stand it anymore. I needed to rule out anything obvious before I jumped to the conclusion that it has to be the damn kidney stones. Knowing how fragile Jack's bones are, I always start there. I moved Jack's arms and legs to see if anything hurt when moved. I noticed when I got to his left leg that his knee was slightly swollen and it didn't look right. I heard a popping sound when I bent the leg at the knee. Jack didn't wince like he has in the past with a broken bone, but he definitely didn't like it. My gut told me that his leg was broken. Jack eventually fell asleep, although his heart rate hovered around 100 all night, telling me that he was still in pain.
First thing this morning, I called and was able to get Jack in to see his orthopedic doc. The x-ray showed that he has an impact fracture of his left femur - a very obvious fracture on x-ray. This is the second time he has suffered this kind of fracture. They splinted Jack's leg with a knee immobilizer and sent us on our way. A couple of people have asked how or when the fracture happened. I have no idea. I don't know when it happened, other than it likely happened within the last week according to the orthopedic doc.
Jack continues to be in a lot of pain despite having his leg immobilized and getting morphine as often as he can. I called the palliative care doctor this afternoon and asked if we could increase the amount of morphine because the dose as written wasn't touching Jack's pain. She doubled the dose and as I sit here right now next to Jack - he is still in pain. His heart rate is high and he's requiring oxygen to keep his sats up. We cannot seem to get him the pain relief he needs. I find it difficult to believe that the broken leg is causing the amount of pain he is still in. So the question is, how much time do I give it before I haul him to the ED to find out if it's something else? And where do we start looking? Do we consider kidney stones as the source even though he had a CT scan just a month ago that showed that the stones were stable? I can't begin to adequately articulate how incredibly stressful and disheartening it is when you have a child in pain who cannot tell you where it hurts. I just want this child to get some pain relief so he can get a restful night's sleep. He is so tired and he can't get comfortable.
I'm supposed to leave for LA on Friday for the Disney half marathon. I think Jack must not want me to do this race because, if you recall, this time last year we were inpatient at PCH and I had to miss the race. I'm still optimistic I'll be able to go to LA, but I guess time will tell.
Que sera, sera.
Friday, August 23, 2013
.... I need to update the blog.
There's so much going on that seems like a big deal in my little world, but feels trivial when I think of sharing it. This life as the parent of a medically fragile child with a progressing disease is anything but routine, despite that it has become our routine. Routine or not, it can be overwhelming and exhausting at times. But, we keep on keeping on because Jack didn't ask for this crappy life and he deserves nothing but our best for as long as we can give it to him.
I talked with Jack's urologist the day after I missed his call. For the record, this guy is at the TOP of the bar. God had mercy on me. After the urologist was unable to get in touch with me by phone, he emailed me (unprecedented for doctors in this City) and asked if I had additional questions since we last talked. I let him know my additional concerns based on the written CT report and before he called me the next day, he had taken the time to go to radiology, sit down with the radiologist and go over the CT scan again to specifically look at the issues I raised based on the report. Like I said - At.The.Top. The plan is to do monthly UAs and monitor for infection. As for the nephrologist, I'd like to say I'm done with her, but she writes the scripts for all of Jack's meds. At this point, as long as Jack stays the status quo, I'll just stay the status quo.
The biggest stressor in my life these days is nursing. I've written much about the nurses we have been blessed with over the years. But, to be honest, after fourteen years of having people in and out of my house every friggin' day, I've about reached my breaking point. Or maybe it's just one of the many factors that has pushed me to my breaking point. As much as it pains me, it's time to make some changes and bring new nurses on board. So incredibly stressful. You get the nurses who have loads of clinical experience and are very competent but are unwilling to stop and listen to how we do things and what is unique about Jack. I'm scared. I'm scared for Jack as he encounters strangers who will touch him, care for him and interact with him knowing he can't voice his opposition or concerns. I'm scared to entrust his life in the hands of people I don't yet know. It's just really, really hard. I've had more than one person suggest that maybe I should work from home a day or two a week so that I can be here with Jack. I think we must make this look too easy. Fact is, Jack is a lot of work from the moment he wakes up to the moment he goes to sleep. I could detail all that goes in to caring for him on a daily and hourly basis. But, suffice it to say, Jack requires skilled nursing care (whether it be from a licensed nurse or his parents) for a reason. There is little down time. So, I trust, I pray and I take my cues from Jack as we make the transition to new nurses in our home.
To be honest, I wake up every day scared and sick to my stomach. If only that translated into an inability to eat, there would at least be an upside to all of this. This leg of the journey is brutal. The unknown is torture, especially for someone like me who likes to know the how, what, when and where of it all. I'm not so good at going with the flow. But, it's sink or swim and so far, I'm still managing to tread water.
The next few weekends will be busy, but fun. This Sunday, I have the Willow Tree Foundation fundraiser and next weekend I'll be in Los Angeles participating in the Disneyland half marathon. I swear this is my last half marathon - I don't know why I sign up for these things, I am so not a runner! One of Jack's former St. Louis nurses is coming out to run the race as part of Team Cure CMD. I'm looking forward to spending time with her as well as seeing one of Jack's former St. Louis docs who now lives in LA.
I'll leave you with a few pictures of my handsome number two son. He's growing up and is such an enjoyable kid these days. I know that could all change once he reaches teenage-hood, so we are enjoying the ride while we can.
Cheers my friends. xo