Thursday, January 22, 2015
Sunday, January 18, 2015
Aberdeen is now 23 weeks old (once she hits 6 months, I'm ditching this week thing). This has been a pretty good week! She's still doing some weird things, but we're starting to understand that it will probably always be that way with Abby. Ultimately, there isn't a whole lot they're doing here in the hospital that we couldn't do at home, so it looks like discharge could be in our near future!
We learned a lot the two times we've gone home, and I wanted to talk about that a little:
Firstly, with Abby, going home does not mean that everything is ok or that it has all been fixed. It hasn't. Some things will never be fixed. I think it's important to understand this, because even though we'll be at home, we won't be taking her to church or out for play dates. We probably won't be taking her much of anywhere, other than medical appointments, until respiratory virus season is over. We want to keep her out of the hospital once we leave, and this is the best way to do that.
Secondly, going home requires a lot of adjusting. We will need time to relearn our home routine. Abby will be going home with quite a bit more than she did last time (longer feeds with fewer breaks, oxygen, a helmet, new meds, etc...), and it will take us a little while to get into a comfortable groove. Though eventually we would like to visit with people (we really do miss our lovely friends), it probably won't be for at least two weeks after getting home. Once we're ready to start hanging out with people again, we may ask you to do silly things like wear a mask if you're around Abby, and will most definitely attack you with hand sanitizer repeatedly throughout your visit. We know that this may seem extreme to some people, but this is how it's going to be.
Enough of that, we're not actually home yet!
This week Abby's been given a good bit of freedom. She's started having breaks from her feeds, during which she is taken off monitors. What this means for her is that we can take her on walks around the unit (sometimes even out of the unit briefly), and play with her on a mat on the floor (you know, normal, boring baby stuff)! We were given the go-ahead by Speech to start letting her taste purées, which has been a lot of fun, and are trying to get her used to the concept of baby-wearing - so far she haaaates it.
Abby playing with some her favorite people in the cardiac step-down unit.
Saturday, January 10, 2015
Abby is five months old today and will be 22 weeks old tomorrow! (I'm doing a joint post...because...lazy). She is hovering just above 12 pounds these days and has recently started grasping and playing with toys, which is great! She has lots to tell us and is sleeping better and better at night. She very much dislikes the chlorhexidine wipes that she has to be bathed with as long as she has her PICC line, but loves to have her hair washed. We adore getting her sweet smiles and cherish her happy days!
|Abby with her normal gadgetry|
Things have continued to be perplexing this week.
She had an additional cluster of seizures on Tuesday after being exceptionally angry all day long. They didn't last as long this time, and she responded well to her rescue meds. Her Keppra dose was increased after this incident, and she's gone a few days now seizure-free! The presumed culprit is a subdural hematoma that was initially thought to be un-troubling. This collection of blood on the outside of her brain is probably left over from her cranial surgery back in September, but as it is now being reabsorbed, may be causing irritation. In a few months, once it is gone, we'll play with her meds to see if the seizure activity had stopped.
Wednesday was a busy day, full of tests. She finally had her helmet scan completed without incident (yay!) and had a sleep study performed that night to assess why her oxygen saturation levels have been dipping in her sleep. Turns out, she has both central AND obstructive sleep apnea. Obstructive sleep apnea is the more common type, sometimes associated with snoring, where your airway temporarily flops closed and impedes breathing. Central sleep apnea is when your brain fails to tell you to breathe. Luckily, in both cases, Aberdeen recovers fairly quickly, but her sats drop enough that she will now require oxygen while she's sleeping. I've been suspicious that she was having apneic episodes for a while now, so was not particularly surprised by the news, but it is one more thing that we'll need to be trained to manage whenever she does go home. It also means we're back to tape on her face, blast!
|Routine EKG gadgetry|
As always, thank you for your continued prayers as we deal with a growing pile of uncertainty and stress.
Sweet baby bird, you are five months old today. I'm so happy to tell you that we are finally safely away from the fear that surrounded the time after your heart surgery. That's not to say that things are easy now, as you certainly continue to challenge us, silly girl.
You become more and more beautiful each day, and I love watching your big blue eyes twinkle as your face lights up in a smile. Your smiles get me through the day. As long as I get to see you smile, I believe I can handle whatever is thrown our way.
This past month has been filled with the ups and downs that have come to define your time here in the hospital. It seemed like we were on a good path to finally get to take you home again, when you started having seizures. Though they've been scary, this new development really helped snap me back into a better place as I look toward your future.
The respiratory episodes that were occurring around your heart surgery were the most frightening thing I've ever experienced. Every time another one happened, a small part of me broke. When we were moved back to the step-down unit and talks began about sending us home without having figured them out, I truly started to panic. I knew that if you had another episode at home, we wouldn't be equipped to help you, and that would be it, you'd be gone. I didn't understand why the doctors weren't as worried as I was, and as discharge loomed ahead of us, I became more and more terrified. I could think of almost nothing else. As soon as you had your second cluster of seizures, I realized that we just don't know what's going to happen. You may never have another respiratory episode, but seizures instead. If not seizures, maybe something else. I can't spend every day worrying about things that I ultimately can't control. We'll just do our best to be prepared and focus on loving every moment we get to spend with you.
Sometimes I try singing the song "Candle on the Water" to you (I still cry). I think that's what you are for me, a lighthouse of sorts. Something that keeps me focused and saves me from falling into what could be a dark place. I still experience a lot of difficult emotions, but it's the thought of getting to continue caring for you that ultimately pulls me out of them.
I'm looking forward to getting to take you home now. I want to acclimate you to the new house, reintroduce you to the puppies, and do our version of what other families get to do. Please get better soon, baby, so that we can go home.
I love you, Aberdeen.
Monday, January 5, 2015
Firstly, I want to say thank you for allowing me a place to be honest in our daily struggles. Yesterday was one of those scream at the sky, punch the walls kind of days, and it needed to happen. I know I spend a lot of time trying to stay stoic enough to get through the day that I don't really acknowledge the ugly emotions that I should be dealing with on a more regular basis. I appreciate all of the messages of support, even as I hit a low point personally.
Secondly, I wanted to clarify that while faith has become a bit of a battle for me in the last few months, I normally do find comfort in scripture. The only time I find it frustrating is in trying to explain away Aberdeen's suffering. When it comes to finding strength in the midst of hard times, or pretty much anything else, please quote away. I didn't mean to run anyone off with my fury, but I did want to express that trying to explain to me how her struggle is somehow fair or warranted just isn't helpful right now. I am working to balance my recent experiences with what I've always known about God, but I believe this will be a long, messy process.
Today has been a much better day. Abby finished another almost 24 hours of EEG without additional seizures. While we're obviously glad that her seizures aren't more frequent, it's a little frustrating that they can never catch what she's doing to better understand her specific seizures and how best to address them. Oh well. She is vomiting less today and has been much less fussy. I've gotten lots of sweet smiles and have enjoyed seeing her awake more than she has been in a couple of days. Lots of tests are being run again to see if any specific problems can be pinpointed, but for today at least, I am just going to enjoy my sweet little princess.
Sunday, January 4, 2015
Abby had another seizure this morning. None of her seizures have been the grand mal type you typically picture. Rather, they're localized to a small section of her body - Thursday, it was her face and hand; today, her feet. Neurology was able to come by and see it happening and confirmed what it was. Naturally, she made it through her 36 hours of EEG with no problems, was discharged from the CICU, and THEN had another one. Usually they don't allow patients having seizures to stay in the step-down unit, but since her vitals are stable, they're having her stay for now.
After Thursday's event, we were simply exhausted. Every time something new pops up for Abby, it drains us. There were already enough things for her to contend with, and having to watch her have to go through something additional, and support her through it, zaps us of our energy. Today, I am very upset. I just don't understand why such a sweet, helpless, completely inoffensive person should have to go through what she's going through. Please do not quote scripture to me on this point, it is not comforting, and does not bring me to some epiphanous place where my child's suffering suddenly makes perfect sense. Maybe someday, it will become clear. Maybe someday, I'll understand with a patient, thankful heart. Right now though, I'm lost somewhere between devastated and furious. I just want her to not have to struggle through every single day. I want that for all of these kids here. I just don't get it.
Thursday, January 1, 2015
...back in the CICU. After an extended period of extreme fussiness, Abby starting seizing this afternoon. After about an hour, and a lot of meds, the seizures seem to have stopped. She is vomiting quite a bit though. She's had a head CT done now, and is scheduled for an EEG. We have no idea what has caused this new development, but suffice it to say, we're stressed and concerned.
- Updated 1/2/15 10:00am
Abby's doing ok this morning, though she's over her fancy hair accessories now and is bound and determined to get them off. No additional seizure activity since starting Keppra last night, but no further clues into what caused them either.
- Updated 1/2/15 7:00pm
Still no additional seizure activity per neurology, though she's still having some nystagmus and tongue thrusting (the latter was most likely caused by the rescue meds given yesterday). When she had her MRI done last week, a subdural hematoma was found, but it was considered old (assumed to be leftover from her cranial surgery) and neurosurgery was unconcerned about its effects on her brain. The CT scan yesterday showed that the hematoma is actually shrinking as it is being reabsorbed into her body. No additional issues were present. Vitals and lab work have been normal. The reason for the seizure onset is unclear, but with everything with Abby, is likely multi-factorial. Between irritation from the hematoma, getting over an infection, and weaning off of the Ativan and clonidine she's been on for over a month, it may have simply been a perfect storm to cause seizure activity.
Based on her EEG findings, neurology is recommending keeping her on the Keppra for a few months as the hematoma reabsorbs. This medication is considered safe in heart patient use, but has the potential to make her very agitated. We'll have to keep an eye on her over the next week or so to determine if it's a good fit.
- Updated 1/3/15 2:30pm
Abby completed her 36 hour EEG without any additional seizure activity, though some of her background activity suggested she was at high risk for future seizures, hence the Keppra being started. She's vomiting a lot again, but since she is not considered critical, we should be back in step-down by the end of the day!
- Updated 1/3/15 10:00pm
Abby is back in the cardiac step-down unit again! Still vomiting quite a bit, not totally sure why.