TCH Follow-ups, back to the OR

We arrived in Houston yesterday afternoon for a couple of days filled with with routine appointments and post-op follow-ups. Ironically, these are appointments we had scheduled over a month ago. Today, we met with ophthalmology, who told us that Aberdeen would need to be fitted for glasses at her next appointment, and this afternoon we'll follow up with cardiology, per usual. Tomorrow, we were supposed to be going to our routine follow-up with the craniofacial team and meeting with Abby's new neurosurgeon (the one she saw for the past 1.5 years retired last month). As it happens, we are now well acquainted with Abby's new neurosurgeon and no longer need to have the anticipated conversation about the timing of a cranial vault expansion. Ah, life. Instead, Aberdeen will be meeting the craniofacial team in the OR again tomorrow to remedy some major issues we've had with her incision over the last week and a half.

While areas of Aberdeen's main incision are healing well (and her shunt incision looks awesome), there are a couple of spots on the top of her head that have been a source of great concern. Unfortunately, her skin has not been able to accommodate the amount of tension required to secure her scalp after her skull was expanded, and it has been tearing away from the sutures. We've sent dozens of pictures to her team over the last week, and they were hopeful that it would start to heal on its own after a few days. While some of the spots have done just that, one of them has continued to open, leaving a large, gaping wound on the top of her head. We've done our best to keep it clean and deal with wound care and dressing changes as instructed, but I haven't felt confident in our ability to deal with the severity of the wound for a few days now. After the last batch of pictures we sent was received by the team, they decided it was time for surgical intervention so as to minimize the risk of infection - which is of especially high concern now that she has a shunt. Tomorrow they will clean out the wound and hopefully close and secure it as best they can. While I hate that she has to go through even more trauma this month, and I'm pretty sure cardiology is going to throw a fit when we tell them this afternoon, I don't know what else we can do at this point. 

So, back to the OR we go. They expect that this will merely be an outpatient procedure, but right now we're planning on staying in Houston an extra night, just to be safe. Thankfully, Abby has been in great spitrits and such a trooper through everything. Prayers this is the last step we have to take toward getting Aberdeen's head healed up and back to our usual routine. 

Adjusting to Home

Some things about being home are beautiful.  It's wonderful not to have people coming to bother your child at all hours of the day and night. It's great to be able to go on a walk outside when the fancy strikes.  It's nice to think that you might be able to actually get some sleep here and there.  Other things about being home are incredibly challenging: mainly, you don't have medical professionals at your beck and call whenever you think something might be wrong.

Things have admittedly been a little rocky since Aberdeen was discharged on Saturday morning.  She has started throwing some pretty epic tantrums again.  They don't necessarily last very long, but she can go from 0 to 100 at the drop of a hat.  With the tantrums come difficulties post-op that we haven't had to previously deal with.  Every time she starts screaming, her incision starts to bleed again.  I'm genuinely worried that she is going to seriously hurt herself during these episodes and I don't know what to do. Her incision runs from ear to ear over the top of her head like a wavy headband (plus the additional incision she has on the back of her head from her shunt placement).  Because they expanded her skull so much to give her brain room, they had to stretch the skin considerably to get it to fit back over her new skull shape.  The skin at the incision isn't healing as quickly as we'd like because of how thin it is stretched in certain areas, causing it to drain blood and fluid more easily than it might in other craniosynostosis cases. We've consulted with the craniofacial team over the phone and have sent them lots of pictures. They've assured us that the drainage we are seeing is still within the realm of normal, but it wasn't happening while we were in the hospital, and it really isn't fun to have new things pop up once you are three hours away from the people who can best help her.  Not to mention the fact that her skull is visibly shifting around. At certain points during the day, you can see the anterior portion of her skull moving independently of the posterior half.  Also expected, apparently, but pretty disconcerting to watch happening.  I feel like we're a little out of our depth right now. Everything happened so fast, and I'm worried that we aren't as equipped to deal with some of these bumps in the road as we have been in the past.

We're trying to stay optimistic and establish a sense of normalcy again, but it has not been easy with seemingly so much changing from day to day.  We're doing our best to keep Aberdeen calm and happy, but she's two and a half, and there's only so much that is in our control.  Thankfully, she is at least acting like herself the majority of the time (yes, even the tantrums), but we can't allow her to just do her own thing right now, she has to be closely monitored 100% of the time. I can't speak for Jameson, but I know that I am feeling pretty well maxed out.  My parents have been here and able to help, but the majority of the issue is just the accumulated stress from two jam-packed weeks of medical mayhem and the feeling that we're going to have to drop everything any second and race back to TCH.  I feel like we've experienced a year's worth of anxiety in just two short weeks.  I'm praying that some of her symptoms start to settle, so that our stress can abate and we can breathe a little.

We will be heading back to Houston in about a week for post-op follow ups and a cardiology visit as well.

Discharged!!!

We are outta here!

Shunt Recovery

Friday 2/17

8:30pm We're remaining inpatient tonight to keep an eye on some increased work of breathing. Jameson and I are pretty sure it's still just part of the recovery process, I mean, she underwent three anesthetized procedures in the span of just over a week - I'm sure her little body is feeling it. Hopefully actually getting some good rest tonight (I think I've scared our nurses away) will have her looking improved and ready for discharge in the morning. Fingers crossed and double crossed.

9:00am Abby continues to do well post-op, though we're all pretty tired and grumpy today. We had a very early morning CT scan this morning and Abby hasn't been super happy since then. Not sure what the plan is yet for today, but there is a rumor we may be getting out of here in the next 24 hours. Trying not to get too excited...buuut, I'm pretty excited!

Day of Shunt Surgery

3:40pm Aberdeen has been doing so well post-shunt surgery that we went straight back to the neuro floor - NO PICU! Other than some more gnarly head accessories, it's like nothing ever happened! She had a few X-Rays taken before we came back upstairs, and she will need another CT scan tomorrow. She's already giving us smiles and asking for books and Elmo. So thankful everything went so well!

1:30pm Abby is out of the OR and in the PACU. It sounds like the surgery went very smoothly and she handled anesthesia well. They are going to observe her in the PACU for at least an hour and then decide which unit to move her to, depending on how she's doing.

11:05am They just took Aberdeen back. We anticipate it taking a couple of hours. Had a good chat with Aberdeen's neurosurgeon, Dr. Lam, as well as the cardiac anesthesiologist. They seem very comfortable with this procedure. Abby will probably still have to recover in the PICU, but hopefully this recovery period will be easier on her.

7:15am Aberdeen's surgery is currently considered an add-on case, so we don't have a confirmed start time at this point.

Recovery Part 2: PCU/Neuro floor

2/15 Recovery Day 5:

7:00pm Well, we're heading to the OR tomorrow morning. Abby's neurosurgeon was planning on recommending a shunt placement on Friday, but in her usual, dramatic fashion, Aberdeen had other plans. Her extra ventricular drain, which was heavily sutured into her scalp, decided to come out this afternoon. Yep. Which means the pressure will be building up in her head again, which means we have to do surgery tomorrow. The only reason they aren't doing it tonight is because they can't get CV anesthesia on board that fast. I guess I appreciate that the plan and its necessity are clear, but holy moly, it could have come about more subtly. Nothing on the MRI suggested that this was something we could avoid, so, so be it. My parents flew into town this evening to help out and we're just trying to take things as they come.

9:00am Last night went well. She woke up asking for Elmo on the TV, lol. Elmo in Grouchland has basically been on a loop in our room, but whatever makes her happy. We should be heading down for her MRI any minute.


2/14 Recovery Day 4:

8:35pm Our visit from ophthalmology was, unfortunately, less illuminating than we would have hoped. While she reassured us that Abby's bloodshot eye is just part of the healing process, she did not have an explanation for the nystagmus. Everybody thinks it looks like seizure activity, but the EEG says no seizure activity, so who knows. Today was very long and pretty disheartening. Right now I just hope we all get a little sleep and don't have to move units in the middle of the night.

2:45pm We just got some less than great news regarding Aberdeen's extra ventricular drain output. Basically, even with the cranial vault expansion, the pressures in her brain are too high, most likely due to those venous anomalies we were talking about pre-op. It is believed that those veins are not carrying fluid away from the brain effectively, so even though her pressures are lower thanks to the surgery (mid-20s as opposed to high 40s), without those veins working properly, the pressure in her head will start to rise again as soon we remove the drain that is currently in place. The solution for this problem is the placement of a shunt, an implanted device that will provide an open channel through which the cerebral spinal fluid can leave the brain. Abby's neurosurgeon wanted to give her a fair chance to prove whether or not she was actually going to need a shunt post-op, as there are lots of risks associated with them, but it's looking more and more like we're heading in that direction. They want to do some follow-up imaging tomorrow, but if the scans show what the neurosurgeon thinks they will, Abby will probably be heading back to the OR at the end of the week. We're pretty devastated that this is where this week has brought us - honestly, I can hardly believe it has only been a week since the craniofacial team asked that we make our way to Houston - we were really hoping that we'd be closer to taking our bird home. We're still waiting on ophthalmology to weigh-in on her eyes.

8:45am I have NOTHING nice to say about last night (other than that Abby did fine), but we're no longer in the PCU, and are now on the neuro floor. Aberdeen woke up in a great mood and acting much more like herself this morning, which has totally made up for the nonsense overnight. We're getting lots of smiles and giggles and love for Elmo. She is still having lots of nystagmus and her right eye looks a mess (very red). Looking forward to chatting with ophthalmology at some point today. Unfortunately, Jameson seems to have come down with a cold, which is not ideal. Praying he feels better pronto.


2/13 Recovery Day 3:

10:20pm Neurosurg is consulting with ophthalmology regarding her eye movements. I'm not going to lie, these have me pretty stressed out. They look a whole lot like the nystagmus she started having a few days prior to having seizures when she was about 5 month old. It's encouraging that the EEG came back negative for seizure activity today, but I don't get the impression that they're particularly useful in predicting the future, so naturally I'm still pretty concerned. She also has what looks like a broken blood vessel or something in the outer corner of her right eye. Will have to wait on ophthalmology to determine if it's somehow related to the nystagmus. She did pretty well with most everything else today, thankfully. Just going to try to keep things quiet tonight, and then follow up with everyone in the morning.

(It took a lot of effort to get this picture in here with my app not working, but I wanted to show off her sweet smile.)
 

3:45pm Lots of doctors have now come by to check out Aberdeen's unusual eye movements. The critical care team paged neurosurg, who paged neurology, who ordered an EEG. It sounds like there was not any seizure activity indicated on the EEG, so hopefully this is just Aberdeen's eye muscles adjusting to their new normal. Abby has been slightly more awake today, which is when we notice the eye movements happening. She has done a little signing, been able to follow a few basic commands, and cracked a little smile, but for the most part she's still pretty out of it, despite being off of sedation for a while now. Not sure what to make of that yet. We got some of the dried blood and gunk cleaned off the back of her head today, which made me happy. Her incision is pretty gnarly looking, but should heal up nicely.

9:25am We are out of the PICU, folks. Hallelujah! We are now in our own room in the PCU, and the plan is mostly just monitoring and working on feeds right now. They are keeping a close eye on her extra ventricular drain, which is how they are monitoring her intracranial pressure. So far, her CSF output has been very steady and unconcerning. Abby is doing something super funky with her eyes right now, and I'm praying she's just trying to open them and look around, but we're waiting on a doctor to come by and take a look.

Recovery Part 1: PICU

2/12 Recovery Day 2:

8:20pm Overall, today went pretty smoothly. Abby didn't require any hefty pain meds and kept her feeds down until one big puke this evening. After running some fluids this afternoon, Abby's labs came back improved enough to let her move to the PCU (progressive care unit - similar to TCC for the Cinci folks). We're still waiting on a room up there, but it sounds like it will be a much more comfortable environment for all of us with a slightly elevated level of care from the regular neuro unit. Abby's doing a few other minor things that still require some focused attention, but hopefully moving will give us the chance to establish a sense of normalcy.

12:00pm Abby's labs came back a little wonky this morning, most likely due to all of yesterday's vomiting, and they want to get her numbers back in check before moving her out of the ICU. They ran some potassium and phosphorus this morning and are upping her IV fluids to help get her electrolytes back where they need to be. They'll recheck her labs this afternoon, and if all looks good, then there hopefully won't be anything else keeping us in here. Abby is still not waking up a whole lot, and now that her eyes are swollen shut, it's hard to tell how alert she is. She tolerated a little of her Real Food Blends this morning, and we'll try a little more this afternoon.

7:50am Although Aberdeen's vomiting picked up again yesterday evening, on the whole, last night went much better than the previous night. She didn't have any major apnea issues and kept her feeds down once they got ahead of her pain management. Fingers crossed we move back to the neuro floor today! She is getting more and more swollen by the hour, which is pretty pitiful, but an expected part of the healing process after having half of your skull removed, reshaped, and put back together. We'll see if she wakes up a little more today, but at this point I'm glad that she's getting some good rest and not requiring respiratory support outside of her normal CPAP routine. :)


2/11 Recovery Day 1:

4:30pm It sounds like she'll be spending tonight in the ICU due to concerns about last night's apneic episodes. She's been awake a little bit, and is already being ornery enough to tell me no. She's made it pretty clear that she wants to hold our hands, but otherwise be left alone. Hopefully tonight will be less frustrating and provide clarity on whether or not she's ready to move tomorrow.

1:00pm Things are going a little more smoothly now. They started Abby on some Zofran and better pain meds and her vomiting has subsided. She has kept a little food and her meds down, which is good. Everyone seems pretty happy with how she's doing overall, and it's still the plan to move to the neuro unit at some point today.

8:15am Abby is doing ok. She is retching and vomiting bile quite a bit, and we really haven't had much success getting her fed because of it. She was on her normal CPAP settings overnight, but because of the incision placement, we can't fit her mask on her head very well at the moment. It's super leaky, and between that and all of the narcotics, Abby is having a lot of apneic episodes an hour. A lot a lot. Her respiratory rate has been quite low, but thankfully her oxygen saturations have been great. Jameson took the night shift in the PICU, and while ICUs are never fun, it sounds like last night was particularly unfun. The set-up in here is not as private as the CVICU, it's extremely crowded, and we're having to do a lot of the work. We're used to being in charge of Aberdeen's care, but not in an ICU, which is extremely frustrating. Abby has still been pretty sleepy, and I'm not sure she's getting much quality rest right now with the madness of this ICU. Hopefully things improve throughout the day and we can get back to the neuro floor pronto.

Day of Cranial Surgery

8:45pm Abby is doing well! She is still pretty drowsy, but has been stable on room air since leaving the OR (she was already extubated when we first got to see her).  She looks very different - they expanded her forehead quite a bit to provide a cover for her eyes and leave plenty of room for brain growth. She has a little swelling right now, but we've been warned that it will get much worse, and her eyes will most likely swell shut in the next couple of days. It's an adjustment to see her face looking so different, but we won't really have a good idea of what it truly looks like until the swelling dissipates in a few weeks. The plastic surgeon explained that he over-corrected her forehead and orbits to account for some shifting as her skin tries to pull her skull back to where it was. No matter what it looks like, in the long run we are thrilled that they were able to successfully complete this surgery without any anesthesia complications and minimal blood loss. The next 24 hours are still pretty critical regarding risk of complications, but she is in the PICU and they are keeping a close eye on her. Depending on how tonight goes, she may be able to head back to the neuro floor tomorrow, but I don't want to count our chickens before they hatch. Tonight's plan is to try to get a little food in her belly and stay ahead of her pain and any potential breathing complications. Thank you so much for all of your love and support today. We are exhausted, but very happy with how everything went.

3:10pm She is headed to recovery!!! Everyone seems very pleased with how she did and the results they were able to achieve. It sounds as though the pressure was caught just in time before it caused any lasting effects that they would be able to observe during the surgery. She will be very swollen for the next few days and they will continue to monitor her pressures through a drain in her head (they removed the lumbar drain). Obviously they will keep a vigilant eye during recovery, but so far we could not be happier with the reports we are getting!

2:15pm The reconstruction is complete! They are closing up her incision and will hopefully be coming out to talk to us soon. From what we've gathered, she did great.

10:30am Surgery has officially started. It took a bit to put her under anesthesia safely, get all of her lines in, and get her head prepped (she's bald again). We anticipate this surgery taking approximately 5 hours. We're getting fancy updates from the OR through an app, as well as from the waiting room attendant. It sounds like everything is going smoothly so far and that she hasn't given the anesthesia team any trouble.

8:45am: They just took her back. The cardiac anesthesiologist did a good job of scaring the crap out of us, but he said he was up to the task and would take care of her as if she were his daughter. We're having kind of tough time this morning, as this week has been a bit of an avalanche of information and concerns, but we're hopeful that Abby will be her strong, resilient self through everything.

Well, here we go again. I will do my best to keep this post updated throughout the day. Thank you for your continued thoughts and prayers!

Intracranial Pressure

2/9/17 6:00pm It looks like we're a go for cranial surgery first thing tomorrow morning!


2/9/17 11:00am We had a quiet night (well, as quiet as it gets in the hospital) and got moving on things early this morning. An EKG, chest X-Ray, and echocardiogram are on the docket for today  to ensure that there aren't any new or pressing cardiological concerns that could impede our ability to move forward with cranial surgery. The lumbar drain doesn't seem to be bothering Abby at all and is doing its job. We learned this week that ALL of Aberdeen's cranial sutures are fused, which was not the case when she last had a CT scan this past June. There just isn't anywhere for Aberdeen's brain to go, hence the increased intracranial pressure. The craniofacial team will open those sutures back up, relieving the pressure on her brain, and move the pieces of her skull around to allow for optimal protection for her eyes and room for her brain to continue developing. The team feels confident in their ability to do this safely and are hoping to get her into the OR tomorrow morning (this will require some adjustments to the current OR schedule, so it's not set in stone yet). Abby has been in a great mood all morning, and we are pleased how quickly everything is proceeding.


2/8/17 6:15pm Abby is out of her lumbar puncture procedure and is awake and doing well. Part of this procedure was to measure the amount of pressure in her head, which turned out to be dangerously high. Normal pressure for a small child would be under 18 (measured in mmHg) - Abby's clocked in at 49. From the sound of it, we caught this just in time, as pressures that high could easily have caused her to go blind. She just hasn't been exhibiting symptoms, and without the ability to communicate to us that she may have perceived that something was wrong, there was really no way for us to know. Very scary and incredibly frustrating. Thankfully, it was caught in the nick of time, and we are moving in the right direction now. A drain was placed to remove any cerebral spinal fluid she produces in the next few days, and her body will continue to absorb fluid as well, hopefully relieving the pressure in an efficient, safe manner. The neurosurgeon suggested that she wanted Aberdeen in the OR for her major cranial expansion by early next week, but we'll see what the schedule permits - there are a lot of people to organize to make this happen. We're very thankful for this team and the fact that Abby is still acting like herself through all of this.


2/8/17 9:00am News this morning has not been great. There is significant concern about the effects the amount of pressure in her head could have on her eyes and brain. CT revealed complications with her veins and blood vessels that render certain surgical options impossible, so right now they are trying to buy her some time while they come up with a reasonably safe surgical plan. They are going to start her on a medication that should help slow the production of cerebral spinal fluid, although this is considered a temporary solution. They will also be doing a lumbar puncture (under anesthesia) to gauge the precise amount of pressure in her brain and drain excess cerebral spinal fluid to hopefully keep any catastrophic effects at bay. We will be here until they formulate a plan and she has surgery - most likely within the next few days. Thank you for your thoughts and prayers.


2/7/17 11:00pm Things have been moving pretty quickly since we arrived at TCH. We're still in the ER, but a request has been put in for admittance to the neuro floor. Ophthalmology came by and confirmed the optic nerve swelling that was seen at yesterday appointment. They've placed an IV, run labs, and performed a CT scan with contrast to get a better look at her veins (she had a CT without contrast done about a week ago that they have as well). She's currently sleeping as we wait for admission and for all the necessary teams to confer regarding the plan.


2/7/17 4:30pm Well, we are currently en route to the TCH ER after a concerning ophthalmological exam yesterday.  Also, my Blogger app broke, so I apologize if this post looks a mess, I can't tell. Anywho, we had an eventful trip to the pediatric ophthalmologist at the military treatment facility in San Antonio yesterday morning that lasted 3+ hours and included a fire alarm/quasi evacuation. The resident and attending checking Aberdeen's eyes agreed that there appeared to be optic nerve swelling, obscured vessels, and a possible hemorrhage - all indicative of intracranial pressure and requiring immediate follow-up with her neurosurgeon to determine the necessity of cranial surgery. After talking to the craniofacial team at TCH, it was decided that they wanted their ophthalmologists to look at her first to see if they agreed with the findings. We scheduled an appointment for Thursday and carried on. Today, we get a call from the craniofacial team saying that not all of the information was relayed to the right people and now they want us to come to the ER for further evaluation. So we ran around like chickens with our heads cut off getting everything packed and hit the road. I'll update when we have more information.

In other news, Abby got her AFOs (new leg braces) today and stood on her own for a few seconds for the first time ever!