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.
Thursday, February 16, 2017
Monday, February 13, 2017
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.
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.
Saturday, February 11, 2017
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.
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.
Friday, February 10, 2017
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!
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!
Tuesday, February 7, 2017
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!
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!
Friday, December 30, 2016
End of 2016 Updates
I haven't done an update in a couple of months because it's been relatively smooth sailing over here lately. No news is good news, right? Abby is about 25lbs and 32in long these days. She's wearing 24 month clothes for the most part and just went up a diaper size. She still has the teeniest tiniest feet ever (size 3s are roomy), and has more personality than just about anyone I've ever met. She's working hard at therapy, learning to use a picture system to communicate with in addition to her signs, honing her fine-motor skills, and making progress little-by-little with gross-motor skills. She is so close to mastering the transition from laying down to sitting up - I know she is capable of doing it, but something still hasn't quite clicked so that she's doing it without prompting yet, but she's so so close. She's just starting to cruise along furniture, and can walk a good ways in her gait-trainer - though she gets tired-out easily and requests a lot of breaks. She is still 100% tube-fed, but we're continuing to work on desensitizing her mouth in hopes that someday she will accept food orally. One big change at therapy recently is that I have finally been sequestered to the waiting room. Abby started throwing epic tantrums during PT, and it seemed like me being there was only making things worse. While it was really hard for me to accept that it was time that I give her some space, she has done so much better without me back there with her. My little girl's growing up!
Abby hasn't had too many additional appointments lately. We've tweaked her feeds here and there to account for her weight gain post-op (it's amazing how much more efficiently your body works when your heart isn't obstructed), as well as her continued vomiting. The puking isn't as consistent as it used to be, but it certainly hasn't gone away either. This seems to be par for the course with a lot of kids with Noonan's and we're just hoping that over time it will dissipate. A recent cardiology follow-up showed no change regarding her hypertrophy. This is great news. While her heart is still very very thick and has all sorts of risks associated with it, the fact that the obstruction that was remedied during her July surgery hasn't returned is really positive. There was a chance that she could have gone through everything she did, just to have the muscle grow right back. But so far, her obstruction is still pretty much non-existent and no other hypertrophy-related issues (arrhythmias, etc) have surfaced. She's on a 24-hour Holter monitor right now, but just to have some post-op baseline data to compare to down the road. Come January, Aberdeen will be two years seizure-free (knock on wood), and we're discussing weaning her seizure meds after a follow-up EEG. It would be nice to be down one more med, especially if she really doesn't need it anymore. We'll have to follow-up with the neurosurgery team again in the next couple of months for more discussion on when will be the right time for Aberdeen's next cranial repair, but they may recommend that we wait because...
WE'RE MOVING TO WASHINGTON D.C. IN AUGUST!
We've known for a while now that this would be in the plans, but now that it is officially official, you can all know too. Just as moving here was challenging, getting set up with a whole new team in the D.C. area will be a difficult process as well. However, we hope that in the D.C. area we'll stand a better chance of having Aberdeen's care spread across fewer facilities - and that none of them will be 3+ hours away. While the idea of moving again is daunting, I really do hope that the area will be good for us as a family.
We have enjoyed a wonderful holiday season here in San Antonio, with lots of family visiting, fun with local friends, and way too much food. I will be making my first trip away from Aberdeen this coming month - wish me luck and not too many tears! I know Jameson will be fine with her, but I've never left her for more than 24 hours, and I already know that it's going to be tough. I need a break though and am looking forward to seeing my family out in their new homes in Seattle.
Since I didn't do a post-Thankgiving update, I'll leave you all with a boat-load of pictures from the last couple of months and wishes for a very Happy New Year!
Wednesday, November 2, 2016
October Updates
On a very positive note, Abby has made some exciting jumps on the therapy side of things: After facing a lot of resistance in her gait-trainer since finishing up sternal precautions, Abby is now walking in it better than ever before and with even less assistance - apparently she did NOT want to be strapped in anymore. Stubborn girl. She also recently discovered her "oh", and "ooo" vowels and with them, her first attempts at purposeful speech! She is saying "uh oh", a version of "Elmo", and even the dreaded "no" - which we're completely thrilled about. She seems to be trying to use some of her other sounds to make worlds suddenly as well; balls and bubbles are sometimes referred to through speech as well as her regular signs, and she is "copying" more and more words as we say them. So exciting! In addition to those amazing accomplishments, we were also able to get Abby out to the pumpkin patch and had a really great Halloween!
And now, since I've buttered you all up with lots of adorable pictures, I shall step onto my soapbox:
Early last month we trekked out to see the craniofacial team at Texas Children's to discuss the next steps for Aberdeen's fused cranial sutures. They suggested that now that her heart is in a less precarious position that we could do something about her skull if we wanted. If we WANTED? No, we do not WANT, thanks though. It was suggested that there was enough room in her skull currently that her fused sutures shouldn't be causing any undue pressure on her brain and that surgery right now would be for more cosmetic or "reconstructive" reasons. Due to this, we are going to wait. The craniofacial team gave us a little bit of pushback concerning our opinions on not doing surgery for cosmetic reasons, stating that "those are important reasons too." Look, we can acknowledge that a person's physical appearance may impact other areas of their life, but with everything Abby has been through we just cannot in good conscience put her through another major surgery for something that isn't currently a necessity. We are prepared to eventually NEED to do another cranial surgery to create better protection for Aberdeen's eyes as well as open up those sutures again, but thankfully that time has not yet arrived.
Early last month we trekked out to see the craniofacial team at Texas Children's to discuss the next steps for Aberdeen's fused cranial sutures. They suggested that now that her heart is in a less precarious position that we could do something about her skull if we wanted. If we WANTED? No, we do not WANT, thanks though. It was suggested that there was enough room in her skull currently that her fused sutures shouldn't be causing any undue pressure on her brain and that surgery right now would be for more cosmetic or "reconstructive" reasons. Due to this, we are going to wait. The craniofacial team gave us a little bit of pushback concerning our opinions on not doing surgery for cosmetic reasons, stating that "those are important reasons too." Look, we can acknowledge that a person's physical appearance may impact other areas of their life, but with everything Abby has been through we just cannot in good conscience put her through another major surgery for something that isn't currently a necessity. We are prepared to eventually NEED to do another cranial surgery to create better protection for Aberdeen's eyes as well as open up those sutures again, but thankfully that time has not yet arrived.
Also, in an effort to be candid, I'd like to express how dismayed I am that there is such an emphasis placed on physical conformity within our country that it would be deemed necessary to put a CHILD through a major surgery solely to alter their appearance. I wish that instead we did a better job of teaching acceptance of those who may look different.
We had an unpleasant experience in the last week, where an older child made a very rude comment about Aberdeen's appearance. I can't say that I handled it all that well. Chalk it up to social anxiety, but while I am brilliant at coming up with zingers and teachable moments after the fact, in the moment I am much more prone to either silence or crying when approached with unpleasantness. I wish I had told that child that Abby is just a sweet little girl who is friendly and strong and deserving of all the respect in the world, but in that moment, all I could do was hold my baby close and choke back some tears, thankful that she didn't understand what he'd just said. I wish I could advise that child's parents on how to approach people who are different than them. I wish I could ask that they teach them that children like Aberdeen are PEOPLE with thoughts and feelings and worth. However, since I don't know this family, I'll say it to all of you:
PARENTS: Please, I implore you, expose your children to people who are different than them. Explain to them that really they are more alike than they are different. Teach them that there is nothing to be scared of, that these PEOPLE have feelings that can be hurt, and that they deserve the kindness and respect that would be awarded to anyone else. Encourage them to ask questions, and genuinely seek out answers, so that maybe in the future, they will greet these PEOPLE with understanding instead of negativity.
We would never shirk a well-intended question. I'm happy to tell you about Aberdeen, let her say hi to you, and answer any queries you may have, but I can't do that if you don't ask. If you shush your children when they start to ask a question or shy away from making eye contact with us, all you do is increase our otherness. Engage us, we don't bite.
We would never shirk a well-intended question. I'm happy to tell you about Aberdeen, let her say hi to you, and answer any queries you may have, but I can't do that if you don't ask. If you shush your children when they start to ask a question or shy away from making eye contact with us, all you do is increase our otherness. Engage us, we don't bite.
To sum up what has been an unexpectedly cathartic post, I'd like to pose a question to the internets: Since we really haven't had to deal with many negative comments over the past two years, I haven't come up with a good plan for responding to them when they do pop up. I was thinking about printing up some information on Aberdeen's conditions (think business card sized info) to give to people in the event that something like this happens again. Does this seems like a reasonable and helpful idea? I don't like relying on my ability to handle situations perfectly, and thought this might at least help start the conversation. Thoughts?
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