PTSD

I've heard multiple parents of medically fragile children talk about PTSD (Post-Traumatic Stress Disorder). It's something I've learned a bit about over the last two years. I take anti-depressants and have lived with the chronic nightmares, but every now and then, PTSD rears its ugly head at unexpected times. I don't mind if this long post goes unread, I simply need to get out my thoughts and emotions.

Let me start by saying that private duty nursing (PDN) has been a huge help. Aside from some scheduling issues, we have been able to get (a little) more sleep, and pass off a few duties to Norah's nurses. Norah is pretty stable at night. She only needs monitoring, suctioning, humidifier refills, and assessing throughout the night. To that, we've added some cleaning items, a couple feedings, a respiratory treatment if she wakes before the end of the shift, and the like, to the nurses' duties. It is important that Norah gets plenty of rest at night. We give her more ventilator support at night than in the day. Every little activity during her waking hours are a workout, so we need her to conserve her energy as much as possible. After all, growing is a key part in her overcoming her respiratory issues.

So last night, we had a new nurse. I trained her but had the nagging feeling that I was forgetting something. Also, she had very few questions. (Yes, I am now going to put a written document together detailing Norah's needs so I don't forget anything in the future.) I fell asleep around 1230 or so, but woke at about 330 to the sound of Norah's labored breathing in the monitor. It was the "sound" of her crying. I went downstairs to find that our new nurse had just completed trach cares (cleaning the stoma/hole and neck, changing the trach ties, and placing a new drain sponge). What I neglected to tell the nurse, was that we simply let Norah sleep through the night. She's always been a great sleeper. She may wake a couple of times if she needs to be suctioned, but will otherwise snooze sweetly. We need her to.

She commented that Norah didn't seem to like trach care. Norah was sobbing. As I comforted her, I kindly said that she hated trach cares in the hospital, but since coming home, Norah doesn't mind when I do it. Jeff has said many times in these last weeks that he is amazed when watching me do Norah's trach cares. She looks up at me with trust in her eyes. If she cringes at all, I talk to her sweetly, or sing to her gently. She seldom cries when I do her cares.

So Norah was traumatized, taking in short gasping breaths. I was traumatized. I had found my girl beyond upset, and the nurse stepping away with the medical supplies. Something about it stabbed my heart. Then I realized what it was. You see, I don't blame the nurse. She was only doing her job to the best of her knowledge, training, and skill. After all, it had been my responsibility to tell her that I did the twice daily trach cares during Norah's waking hours. The distress that I felt was a culmination of all of the times that we've had scares with Norah. It was every time she turned blue. It was when she died for nine minutes. It was every ambulance ride. It was the middle-of-the-night phone calls from charge nurses, telling Jeff and I that we needed to come in. It was her inability to vocalize her fears and pain. It was helplessness while watching her struggle. It was every painful procedure she endured while we did what we could to soothe her. It was sheer exhaustion caused by two years of stressing about my daughter's life. It was PTSD. (I could link many more old posts, but you get the point.)

The nurse was quite well-intentioned when she verbally confirmed that we were new to private duty nursing. When I said that we were, she stated that when Norah gets "better" about trach cares, that it will help give us acuity points. For each item requiring the nurse's attention, Norah gets a certain number of points. These points are what help qualify her for the Medicaid waiver. It allows Norah to have medicaid due to her technology dependence instead of her family's financial status. There is no way I will put Norah through that in the middle of the night - even if it means that we had to give up nursing and Medicaid altogether. This isn't about relinquishing control. Norah needs security, confidence, and sleep much more than she needs those other things.

I like to think that we are very easy-going about Norah's cares. We aren't neurotic about specific things at specific times, or about nurses doing certain things a certain way. We've learned the hard way that the few "rules" that we have must be documented and outlined. Who would have thought that letting her have a good night's sleep was one of them?

A Long Day

With Norah's skeletal dysplasia, c-spine (neck) instability is a known risk. We had been told quite a few times that her x-ray films and MRI were "reassuring". However, we all wanted to formally clear her for c-spine stability, so we were referred to a pediatric neurosurgeon to take a look at the images of her neck. We generally prefer to cram in as much as we can when we visit Primary Children's... but this particular day was more taxing than most medical transports.

Little girl in a big machine

Prior to her appointments, Norah was happy and playful. Our first stop was imaging, for a CT scan of her neck. We had quite the entourage in there: a doctor, a nurse, a nurse practitioner, a respiratory therapist, two imaging techs, and the SDCH medic. She is really difficult to sedate. As expected, she resisted the initial medication, so we had to place an IV and give her something more. This second medication was really hard on her, as I'm pretty sure its effects were scary. Her heart rate shot up, but she was such a good brave girl. I had to hold her head while she went through the machine because she was bobbing her head with each breath, a definite sign of distress.

We spent a little time in sedation recovery, where she spiked a temperature. We stuck around there long enough for a dose of Tylenol and a quick (tube-fed) breakfast. We went to see the neurosurgeon next, who had ordered the CT scan. Despite having the detailed scan, he wanted additional xrays. By that time, we were running late for the orthopedic appointment, which was the original thing on our agenda for the day. So we went up there, took a hip x-ray in the clinic, then had our consult. We then went back down to imaging for the additional x-rays of her neck. Norah by this time was beyond upset, exhausted, and uncomfortable. She was tired of being poked, prodded, and forced into positions that she wanted nothing to do with.

We went back to neurosurgery yet again. After a long wait, we finally got back in to see the doctor. He gave us news that we did not expect. It was his opinion and diagnosis that while her cord looks to have plenty of space (so is not compressed), Norah has an unstable c-spine. We had gone there to get cleared, but were given the opposite result. He answered my questions (I could go into detail if you like, but this post is long enough as it is), which I greatly appreciated. But here's the thing: while I don't doubt that he is an extremely skilled doctor and surgeon, the reality is that there are no skeletal dysplasia specialists in Utah. Sure, this doctor may see every child in Utah that is even remotely similar to Norah... but that's going to be a tiny handful of patients.

Let me back-track a bit. What does c-spine instability mean? It means that she's at heightened risk for a spinal cord injury. What could happen with a spinal cord injury that high up her vertebral column? Well if something really bad was to happen, it could mean paralysis (from the injury all the way down) or death.

That isn't going to happen to Norah.

At this point, we've decided to stay the course (meaning no immediate surgery, and no collar). We'll go in every 3-4 months for more xrays (don't even get me started on the topic of radiation exposure) and a follow-up with that doctor. We'll make sure that Norah isn't looking worse. Hopefully she will improve. Hopefully she won't need fusion surgery. Hopefully this doctor is wrong altogether. Hopefully he just doesn't see enough of these skeletal dysplasia kids to understand that they are hypotonic, and every part of Norah's body is expected to be floppy for awhile. Hopefully he just doesn't understand that Norah's bones are and will be late to ossify, and his films don't show the cartilage  Hopefully we don't have to go all the way to Delaware for a second opinion.

Such a long day

One of the most draining aspects of the day was what it did to Norah. She was miserable. My heart broke every time she would reach for me to take away the sad, scary things that were happening to her. But I couldn't take those things away. All I could do was try to soothe her with words, try to distract her,  and tend to needs like suctioning, wiping tears, fanning her overheating body, and trying to help her be as comfortable as possible. I hate feeling helpless. Even worse, I hate that she wasn't getting the remedy from me that she was asking for. I'm supposed to protect her. Of course I know that no one can protect their children from everything... but it upsets me that she has to go through this. It upsets me that she doesn't understand why these things have to happen to her. It upsets me to think that this is her life, and this is all she knows. Our world lies within hospitals. These people and machines help us to keep Norah alive. It's a rocky start to what will be a trying life of more doctors, surgeries, interventions, and everything emotional that goes with it. But it's a life, and we do our best not to take that for granted. Though we often feel so weak, our strength comes from Norah's light. It comes from knowing that Norah is destined for greatness. For now, all we can do is fight for her and love one another with an intensity and purity like none other.

Trust

Trust can be challenging for any parent when forced to share care giving duties with others... especially those that are outside of one's circle of family and friends. We trust Norah's care team to treat her like they would their own child. Though she is strong, she is also quite fragile. She depends on so many outside interventions, technologies, therapies, and treatments to not only live a full life, but to live at all.

Let me preface this story by stating that Norah is currently happy, healthy, and sassy as ever.

On Monday, the respiratory therapist assigned to Norah made multiple huge mistakes with Norah's ventilator. These mistakes persisted from 8am until I got there at 4pm. I won't go into detail, but I will say that these mistakes were completely hers. I do not blame SDCH; I do not blame nursing or the respiratory department itself. Despite the bi-hourly checks, nothing clicked in this RT's head to tell her that she had done something wrong. This therapist alone is at fault, and I honestly hope that she knows this. This is not a slight to her as a person. It is what it is.

So who do we turn to when our trust is broken? These mistakes could have potentially caused her permanent damage, or accidental death. (I hate even typing that...) What do we do when the person entrusted to care for Norah does something that could have been catastrophic? We turn to those we love. After notifying Jeff, I told two of my closest friends over text message, and without my asking for help, Cecily and Jaci were walking through the door of Norah's hospital room about ten minutes later. Boy were they a sight for sore eyes. Not only are they incredible nurses, but Cecily and Jaci are "Bulldog 1" and "Bulldog 2", respectively. They had to be sure that Norah was okay. They had to be sure that I was okay. They give us such unique support being that they are nurses, they are my friends, and they have become my sisters. I love those girls.

So what happens next? Well, an incident report was filed. It will be discussed by the doctors, directors, and corporate honchos. They will come up with detailed, actionable items that will help prevent this from ever happening again. Additionally, I had wonderful discussions with both the attending pediatrician and the Respiratory Director. They were both wonderful, especially the Respiratory Director. He was apologetic. He was angry. He has a sweet spot in his heart for Norah, and he seemed genuinely angry with Monday's events. SDCH understands that we put their trust in them. I really do have faith that they will be more vigilant than ever in paying attention to detail.

Trust is such a fragile thing. While I trust SDCH, I am so grateful that we've never missed a day with Norah. I hate to think what could happen if we weren't there daily - and that is true regardless of the hospital in which she lives. 

Health Care

A rare family walk outside for some fresh air.

WARNING: POLITICS AHEAD!

I'm really nervous today. Our family pays a ton for our health insurance, and Norah relies on Medicaid as her secondary insurance. All politics aside, if Obamacare is repealed, Norah will most likely be dropped by our insurance. She exceeded old lifetime caps long ago, and has had a pre-existing condition since 20-weeks gestation. Obamacare came just in time. I hate to think of where we would be had it not been passed when it was.

Due to FDA restrictions on ventilators, Norah cannot come home with her current ventilation needs. Trust me, if she could, we would bring her home in a heartbeat. It's been a long fifteen months in the hospital. So without Obamacare, we would have to pay every penny out of pocket for her inpatient health care. A six month stay in PCMC's PICU was just shy of $1.2 million. A recent week and a half was $75,000. South Davis' LTAC, where she lives now, is cheaper but it's still so far beyond what we could ever afford. And we've been told time and time again, that Norah isn't your typical long-term patient. She's so intelligent. She's funny. She's playful. She is mentally and emotionally sharp. She's a heart-stealer. Despite the rarity of her predicament, I know that there other kiddos out there like her, in similar situations. Children with great lives ahead of them, that just have to make it through a rough spot.

So I'm really worried about election results. I really don't want to post anything political on my blog, but we're talking about something more than politics.

Everyone who can, should vote today. I support everyone's vote, regardless of their choices. We're all allowed to have beliefs and opinions all our own. I just really hope that no matter tonight's result, that Obamacare stays firmly in place so Norah can continue to thrive, and our family doesn't become financially destitute. What would happen to Norah, our most beloved star? We cant afford even a single day gap in coverage. I know there is more to Obamacare than this, and many people don't like it, but it has changed our lives, and has most assuredly helped save Norah's.

Having Her... Without Having Her

I have been feeling quite conflicted lately. Yesterday, I had a chat with some of the staff at South Davis about that really awful day almost exactly one year ago (November 21st, a date I remember well). It's hard to put to words how overwhelmingly thankful I am that she was brought back that day. We all fought so hard, and were really fortunate that we were on the winning end of that battle. But truly, something inside me knew that it wasn't her time. But of course, perhaps that could have been denial of the reality of the situation. I've now become semi-obsessed with recounts of near death experiences. Did she see me crying in the hallway? Did she see Harper anxious to get as far away from the situation as possible? Did she see her daddy doing his best while being pulled in all sorts of directions? Did she see the staff at South Davis, furiously doing chest compressions while bagging her? How much did she understand at not even four months old? Does it even matter when it comes to one's soul? As a strongly agnostic person without any religious ties, it is tough for me to reconcile science, spirituality, and reality.

My heart is conflicted about how thankful I am that I can go see her anytime I want when I miss her, with the anguish that comes with being so close yet so far away. We live separate lives. We don't get to be together for every little thing. As she gets older, it gets harder. There is nothing that makes me both happier and sadder than seeing how excited she is when Jeff and I step through her door. I just know that she's been waiting all day for us, wondering when we would finally arrive. She wants to play. She wants to cuddle. And we have to cram it all into a short period of time. We have her, without having her. It is never enough time. When we have to say goodbye, I always walk away with a sad, lonely feeling in my heart. Every day. The worst part of it now is that I recognize the same thing in her eyes, too. She hates when we leave. I'm not sure if she understands why we aren't together, and that kills me. I can feel that she is hurting, too. But she is so much stronger than I am. She doesn't cry. But that might make it even more sad. This separation is all she knows.

Norah is so smart, and so aware of everything and everyone around her. She's always been that way, even at just a few days old. And others comment on what an old soul she is. But in some ways, it works to her detriment. If ignorance is bliss, what does that make intelligence? How much longer will we have to wait to be together? Will she be walking and talking by the time that happens? Will she be going to school? Will she be a grown adult? Okay, I know that she'll be coming home sooner than that, but sometimes it feels like the day she comes home to stay is a lifetime away. When she was first trach'd, no one would have ever guessed that she would still be living in the hospital at fifteen months old. So what does that mean for the future? My patience meter is running on empty these days, and it has got me really emotional. Some days I feel so on top of everything, and other days are just a tear-fest.


But we keep going. We keep going because we don't have any other choice. Our situation is only as hard as we make it. We could be like most of the other parents of the kids at South Davis (though there are some exceptions), and just resolve ourselves to the fact that she lives there. They rarely visit, and it breaks my heart. So of course we can't do that. We go every day because there is no other way. She is our family, and we do everything we can to give her the best life possible. So we keep on going. We may not like it, but we know that we can do hard things. The last fifteen months proves it.

Harper's first carousel ride at the Zoo. We try to do special
things with him so he doesn't feel like he has too much
of a bum deal. 

After going to the zoo, we wanted to go back for
a second visit with Norah, especially so she could
play with the little monkey we got for her. We're so glad we did.

Off-Roading

I'm not talking about the fun kind of off-roading here. The title of this post is, of course, metaphorical. I'm referring to the kind of off-roading we're doing with our lives these days. You know: the unexpected bumps, the ups, the downs, the mud pits, the big dips into the scary holes... We're not in a hole, thank goodness. But the last few days have been pretty bumpy.

Our Fouth of July won't go down in the record books as one of the best ever. We spent the majority of the day cuddling on Norah, who was feeling pretty sick. She has some sort of viral thing, and it's kicking her butt. We went up on her ventilator settings (from a pressure support of 10 to 12), but it didn't necessarily seem to help. Her awake/resting heart rate was as high as 150-160, though it is normally in the 120-130 range. She was spiking fevers, and was clearly uncomfortable.

To our surprise, Norah significantly perked up on Thursday. She was playing, smiling, and oh so happy. We were relieved. Today (Friday) was a different story. She's super sick again, which is really odd behavior for an assumed virus. Her eyes were glassy again, her work of breathing was up, she was completely lethargic, and slept most of the day. We again went up on her ventilator settings (now up to a pressure support of 14), but I can only hope it helps her rest. She keeps coughing without producing secretions out her trach or in her mouth, so I asked if they thought she might have a small plug in her trach, which would require an extra trach (tube) change. We were just about to change it when her RT said that a little lavage suctioning should clear her airway if there is any sort of obstruction. Plus, her peak pressures haven't been up, which would happen if she had any sort of plug in there. The lavage didn't seem to do anything, and she's still sitting there with the same trach in her airway. But whatever... I suppose he is right when it comes to the peak pressure thing. (I know, sorry... more jargon, but I just feel the need to spew my thoughts.) Before we left this evening, she did her best to play and smile, but she was still a little off.

Of course I'm thankful for everything we have, but these bumps have me frustrated. I do my best to maintain perspective, but it's exhausting. I just want things to be easier for Norah. I want her to be able to run, when she can't even walk (or crawl... or sit up, for that matter). I don't want to have to drag Harper to the hospital every day. He wants to see his sister, but he's tired of the "doctors" (he thinks all of the staff are doctors) and other strangers we meet there. I want more time with my husband. I don't want us to feel so divided all the time, or feel like we have to pick and choose with whom or where to spend our time. I want more time as a family of four.

I know we should be glad that Norah will someday come home when others aren't so fortunate... and we are so very glad. But we're also exhausted. I would lie if I said that I didn't envy all these people having babies with "typical" experiences. At almost a year old, there are moms out there who have run the entire course of their pregnancy and have had their babies home for months in the same time that Norah has been living in the hospital. Our solace is in Norah herself. Those parents don't have this ray of sunshine. They don't have this little girl that changes the lives of everyone she meets. I would never trade her for any of these babies. She is worth every bit of drama, every tear, every dollar, and every effort. But I must admit that I sure do sometimes look longingly at the green grass on the other side of the proverbial fence.

Not Getting Any Easier

As Norah grows up at the hospital, our situation becomes increasingly difficult. The truth is that I'm tired of being strong. Though the quality of care at PCMC is unparalleled, I hate leaving her there. I just want to take my sweet girl home. I want to be able to laugh and smile all day with her. I want to tickle her toes and play "Itsy Bitsy Spider". I want to paint her tiny toenails with private giggles and cuddles just for us to share. I want Harper to be able to give her smooches and read books to her. I want family nap time on the weekend. I want to watch Jeff fall asleep while holding her late at night. I don't want to have to worry about test results, treatment plans, x-rays, ventilator settings, hearing aids, and specialty doctors. I don't want Norah feel the pain of blood draws, culture swabs, the tug of the vent on her trachea or her g-tube on her belly, or all of the constant invasive poking and prodding. I want normalcy. I guess our current way of things is "our normal".

I try not to feel sorry for myself too often. After all, I know things could be much more difficult. We are fortunate to have as much as we do. Most of all, we are fortunate that someday, we will be able to take Norah home. She has a challenging but bright future so long as we all be patient and hang in there. Deep breaths aren't easy for our family (especially Norah), but we sure are trying.

Go Figure...

Is the universe sending me some sort of message? Do I have some sort of crazy extrasensory perception? Sometimes I think that's the case, but I'll stay on-topic here. So right after typing yesterday's rant post about our new and improved worsened health care coverage, what was tucked lovingly into our mailbox? That's right folks - a hospital bill was waiting for me. And not just any hospital bill, but one that was a whopping 600% more than I had expected. Silly me (you'd think I'd learn by now, but I'd rather check to be sure), I called both the hospital and insurance company, only to find that the charges were all valid. Sigh.

In other news, I'm feeling pretty great for the most part. This pregnancy has turned out to be much easier on me overall. I've gained less weight, I'm not swelling nearly as much as I did with Harper (I even sported a lovely pair of compression hose last time), and though elevated to "borderline", my blood pressure isn't nearly as bad as it was last time. Interesting that this "high risk" pregnancy ends up being easier than my "normal" one.

With Harper, I would have been set to deliver next week, during the 37th week. Crazy, right? Judging by my progress at today's appointment, my midwife said that it was looking like I was going to be "pregnant for awhile longer". So I'd like to say that the baby will be here in just a few more weeks, but we'll see how things naturally progress. Mother nature has been good to me so far with the summer temperatures, and I don't mind being pregnant for awhile longer. It's no walk in the park, but I've really been enjoying it this time around.

Thoughts at 36 Weeks

I'll avoid jumping into a political-oriented rant here. But I do have to say: our country's healthcare system really needs some work. Our insurance changed in 2010 and at the time we didn't realize how much for the worse that change would be. Sure, it's likely more than adequate for the average person or family, but that isn't who we are.

We had a rude awakening when our hospital bills started to pile up for prenatal care. I even called the hospitals and our new insurance provider, thinking that there had to be some kind of mistake. Nope... Our new insurance was really that lame. Okay, maybe I shouldn't say that it's all bad. After all, I'm grateful that we have coverage at all. There are no doubt countless Americans without any (or adequate) medical insurance. All I know is that all the medical care for this baby is going to be expensive, but we're determined to make it work.

The good news is that there is a Shriner's Children's Hospital in SLC with a long list of orthopedic services to offer our little peanut when s/he needs it. Shriner's is an incredible group that offers medical care to children with special medical needs. The best part? They'll bill our insurance company for whatever they can, but we won't have to pay out of pocket for the rest. I'm pretty sure that this will only help with major procedures & we'll still have plenty more to pay for (ie labor/delivery/recovery as well as the countless inevitable genetic & orthopedic tests), but this will be a HUGE help.

We're less than a month from our due date, and only a week from being full term. We still have lots to do to get ready, but ultimately... We're more than ready to cuddle our little peanut. We still have some decisions to make on baby names, though. It's definitely more difficult having to come up with names for each gender, but the surprise is SO worth it.

A Knitter's Rant

The other day, my eyes caught something on TV that really bugged me. I was reminded of a major pet peeve of mine. The movie was of low production quality circa 1975, and there was some insane lady sitting in a rocking chair, who was supposed to be knitting. Yes, she was supposed to be knitting, but it looked more like she was ineffectively digging a hole in a tangle of yarn. There weren't even stitches on the needles. She was holding a pair of needles much too large for her project, and was plucking and poking like her life depended on it. Would it have been so difficult for either her or the director to do a teensiest bit of research on how to hold knitting needles?

These fake knitters pop up everywhere. I love getting craft ads in the mail (especially my Knit Picks catalog), and scan over every little detail for good deals, inspiration, and eye candy. Not too long ago, I received an ad for a craft store (who shall remain anonymous to protect the innocent), that contained a picture of a joyous mother and teenage daughter who were bonding while supposedly knitting. They couldn't have looked any more awkward. Yes folks, even the craft stores can't quite get it right.

Yes, I do understand the saying "there is no wrong way to knit". Left handed, right handed, pickers, throwers, Tunisian, Portuguese... there are many ways to to hold your needles, and many variances on how to craft stitches. But sometimes it's quite plain when the person has no idea what they are doing. No, I am far from a perfect knitter, and I pass no judgment on other knitters (regardless of their skill level). Maybe I just feel like the intelligence of me and my fellow knitters is being insulted. Or maybe this is just one of those silly, pointless pet peeves. Or maybe I'm just paying too close attention to something so trivial. Hopefully I don't come off to rant-y (yes, I just made up the word "ranty"), because I don't mean to. Well... not really. :)

Inconveniently, I was unable to find a picture of a fake knitter. Go figure. This lady however, really DID knit with these ginormous needles, making the Guinness books with these big 'uns. What are those, like size 80 needles? And rope for yarn? Amazing.