Graham Update Day 83
Graham continues to make great progress in his therapy. He's doing so well, in fact, that we finally have a discharge date. We also have a very big challenge ahead of us as we try to manage his diabetes insipidus, a condition that he will likely have for the rest of his life as a result of his accident. I'll try to explain the cause of it, as well as the unique challenge that Graham faces.
First, the big news: Graham is coming home next Friday!! Yes, on September 5, 2014, just 88 days after getting his head run over by an SUV, we will finally be able to bring Graham home. Graham asks everyday if we can go home, and we certainly share his anxiousness. It has been so long since we have been at home as a family. We long to hear them laugh, play, fight, and argue. We'll take the good with bad, just as long as we are together. It has been such a long journey, and in recent weeks it has been particularly wearisome. And while Graham's homecoming is exciting, it does pose a VERY UNIQUE challenge...
Central diabetes insipidus only affects 1 in 33,000 people in the United States. For those math majors out there, that means there are less than 10,000 people in the country who have Graham's disease. Assuming the averages hold, there would be less than 250 in DFW with the condition, and less than 50 in the entire state of Idaho. So yeah, it's RARE.
The hypothalamus produces a hormone called vasopressin. That hormone is then stored in and released by the pituitary gland, and is used to help the body know when to pee. Graham's hypothalamus was damaged, and he no longer produces the hormone. That means without medication (or when his medication wears off), he "breaks through" and dumps urine at an alarming rate. When he pees so frequently, the fluids in his body become more saturated, causing his sodium to get high. Unchecked, it would get dangerously high.
Most people with diabetes insipidus could actually manage without any medication at all, although the non-stop peeing would get old. As their fluids drop and their sodium rises, they would get REALLY thirsty and drink. The problem for Graham is of the fewer than 10,000 Americans with the disease, he is one of the very few who does not have a working thirst mechanism. So when Graham gets to a point where you or I would just about be willing to drink our own urine, Graham just carries on, not feeling any thirst at all.
In a hospital setting they can check his sodium twice a day and adjust his dose accordingly. At home, we don't have that option. There is a company called Abbot that makes a home sodium meter called that iStat, similar to a blood sugar meter that diabetics use. There problem is they have only made 50, all the meters are in use, there is a waiting list to use them, and they are no longer accepting people on the waiting list. Furthermore, the machine is not FDA approved, which means they cannot mass-produce it. And, likely due to the fact that less than 10,000 people in the country have diabetes insipidus, they don't even have plans to get the machine FDA approved or ever mass produce it. So unless someone knows the CEO of Abbot or has another way to check Graham's sodium level at home, we will be playing a very critical guessing game for years to come.
And it is a guessing game, by the way. They have literally changed the dose of Graham's medication at least twice per week for the last 2 months to try to get it in the right place. They have gone from shots to tablets. From giving doses twice a day to giving doses three times a day. No matter what they do, he always needs a different dose. In a normal patient it's not too big of an issue - when they dump urine at home - give them a dose and have them drink till they are not thirsty anymore. But Graham does not thirst. So the only thing we can do is measure all his fluid output and try our best to replace it everyday and hope that he has enough fluid. But not TOO much - if we overmedicate Graham he will retain too much water and his sodium can also go the other way and get dangerously low.
So managing Graham's condition will be challenging. But we are hopeful that in the coming week his doctors will equip us with some tools to help us keep it in check. And in the grand scheme of things, if this is the biggest challenge we face as a result of Graham's accident - sign me up! His recovery is nothing short of a miracle, and we are so excited for upcoming milestone. Thank you all for all your prayers - we know the road would have been much tougher, if impossible, with them.
Saturday, August 30, 2014
Sunday, August 24, 2014
Home Stretch
Graham Update Day 77
The big event this past week actually turned out to be a non-event, which I will do my best to explain. I'll also give a general overview of where Graham is at in terms of his therapy, and then outline the plan moving forward.
As many of you already know, Graham flew to Houston this week for what we thought was going to be an endoscopic surgery to plug up the crack in the base of his skull. An MRI revealed a few weeks ago revealed that there was a leak from that crack into the sphenoid sinus, putting Graham at risk for future problems, including meningitis.
When we arrived at Houston, the doctors there checked him out and had him do a few exercises to expose any fluid that might have been leaking. He put his head between his knees and did other similar exercises that should have put pressure on his head and made any leaking fluid manifest itself through his ears or nose. But that didn't happen.
As a result, the doctors there came to the conclusion that Graham did not need surgery, and here is why:
It is definitely a nice second opinion to have. To be clear, his doctors here still feel like he needs the surgery. With that said, they do not feel it is emergent, and agree that the risk to Graham of going without it is fairly low. So it really boils down to this: the "Dallas Doctors" feel like the risk of surgery is lower than the risk of an open crack in the base of his skull. The Houston doctors feel like it is riskier for Graham to be anesthetized and operated upon than it is for him to walk around in his present state.
So what will we do? The short answer is "we don't know for sure." We are going to finish out Graham's stint in rehab as if he doesn't need an operation. We will follow up with Dr. Braga after discharge, gain a better understanding of exactly what surgical options are out there (and their associated risks), and then make an informed decision where we are not under some artificial deadline. We will do what we truly believe is in Graham's best interest, long-term.
Medically, Graham is in a good place. The diabetes insipidous that he contracted as a result of his accident (remember all his sodium problems?) has been largely under control. A very significant change - Graham's stomach no longer looks like this:
Graham no longer gets shots to administer his DDAVP. Instead, he takes pills. Early on during his ICU stay that obviously wasn't an option, since Graham was unable to eat or swallow. And many endocrinologists don't like to give the drug through pills because they feel like you can't see changes in the patient quick enough, making it difficult to know how to adjust the dose. In Graham's case though, the more gradual changes in his body chemistry has been a big blessing.
DDAVP takes the place of a hormone that is produced in your hypothalamus and then stored in and released by your pituitary gland. It effectively works as your bladder valve. Without it, Graham will pee unceasingly. When he would get shots of DDAVP, it would immediately close "the valve" and Graham would not pee for hours and hours and hours, no matter how much he drank. Then, as the drug wore off - all at once - the floodgates were open and Graham turned into a flowing garden hose south of the border. Since being on the pill, however, his urine flow has been much more normal; peeing gradually throughout the day and then "breaking through" more slowly as the drug wears off . It makes the idea of managing his DI at home seem much less daunting to Lindsey and me.
Physically, Graham can just about do it all. Although he hasn't been officially cleared to walk around with out someone holding his hand yet, he can. At times when he forgets "the rules" he can take off unassisted, much to the dismay of Lindsey or myself. So far during his "escapes" or at other times when we have been by his side, he has taken off on a run, climbed a playground toy and gone down a slide, and done a full 360 spin while holding his light saber in his hand. He can bend over and pick things up, and when he does stumble or trip he always catches himself. So while Graham won't be able to participate in P.E. or normal recess for at least a year, physically he should be able to do lots of things to keep himself active and entertained.
Mentally, Graham is making great strides as well. His attention span and focus have improved dramatically. So has his ability to recall information. His short term memory still isn't back to 100%, but it is improving and is in a manageable state. For example - if you I ate a piece of cake for breakfast this morning, we would be able to recall it later in the day. Graham typically doesn't remember those sort of details. However, if you tell him several times at breakfast the thing he needs to remember, he will. Alternatively, if you queue him and give him hints, he will be able to draw those details from his memory. So all the appropriate connections seem to be there in his brain, they just need continued exercise.
Graham's eyesight is another matter. While not severed completely, he definitely has damage to the optic nerve in his right eye, as he still cannot sense light with it. He also has damage to the third cerebral nerve in that eye, meaning he cannot move his eyeball and has very limited ability to even open that eyelid. Graham has asked us about it from time to time, and we tell him that we just need to keep praying that it gets better, but it might not - and that's OK. That's why God gave us two eyes - if anything happens to one, we have another for backup.
The good news is that Graham can actually see better out of his left eye now than he could before his accident. His vision was about 20/200 in that eye before the accident, and is now 20/100. There are certain difficulties that come with losing the vision in your dominant eye the way Graham has. The good news is that his physical therapist at Children's Medical Center in Dallas said that one of the best ways to retrain a weak eye to become dominant is to play golf. So golf therapy it is!
In the upcoming week Graham will actually be enrolled in the Fort Worth Independent School district, and a teacher assigned to the hospital will be Graham's teacher until he is discharged. She will perform grade-level testing on him and then instruct him accordingly, just like if he was going to school back in McKinney. A neuropsychiatrist will perform tests on him as well, and then when he is discharged his teacher here and one of his therapists will meet with his teacher and principal in McKinney to help make sure his needs are met when he gets back to his normal classroom, which should be some time in the next two weeks if all continues to go well.
We are so blessed that Graham has survived and come along as far as he has. If, during the week after Graham's accident, you would have described this level of recovery to Lindsey and me, and then asked 1000 times if we would "take it," the answer would have been yes 1000 times. He is doing better than anyone imagined. He is walking, talking, laughing evidence of the power of prayer and the proof of God's love for us. Thank you all for praying for Graham - it has worked and continues to do so.
The big event this past week actually turned out to be a non-event, which I will do my best to explain. I'll also give a general overview of where Graham is at in terms of his therapy, and then outline the plan moving forward.
As many of you already know, Graham flew to Houston this week for what we thought was going to be an endoscopic surgery to plug up the crack in the base of his skull. An MRI revealed a few weeks ago revealed that there was a leak from that crack into the sphenoid sinus, putting Graham at risk for future problems, including meningitis.
 |
| The view from Graham's room in Houston |
When we arrived at Houston, the doctors there checked him out and had him do a few exercises to expose any fluid that might have been leaking. He put his head between his knees and did other similar exercises that should have put pressure on his head and made any leaking fluid manifest itself through his ears or nose. But that didn't happen.
As a result, the doctors there came to the conclusion that Graham did not need surgery, and here is why:
- 90% of patients who have a traumatic brain injury like Graham, where cerebrospinal fluid (CSF) leaks out the nose and ears as it did with Graham in the ICU, develop meningitis - even while being placed on aggressive antibiotics. The fact that Graham has been off antibiotics for weeks, and has not developed meningitis, tells the doctors that he is currently a VERY low risk to develop meningitis. In other words, if he had a risky leak, he would be infected already.
- Patients who have CSF leaks and then recover from them almost NEVER re-develop a CSF leak after this amount of time.
- If CSF is not currently leaking, that means he is "plugged up." And even with the crack in the base of his skull present, that means the opening into the sinus presents no more risk of meningitis than other openings in our heads - like our ears.
- With parental awareness of the signs of meningitis, his doctor in Houston said it is an easy thing to treat, provided you catch it early. Most people have problems with it because they are not aware of what it could be, and it does not get diagnosed until well after its onset. In Graham's situation, that shouldn't be the case. Lindsey and I will be on the lookout!
It is definitely a nice second opinion to have. To be clear, his doctors here still feel like he needs the surgery. With that said, they do not feel it is emergent, and agree that the risk to Graham of going without it is fairly low. So it really boils down to this: the "Dallas Doctors" feel like the risk of surgery is lower than the risk of an open crack in the base of his skull. The Houston doctors feel like it is riskier for Graham to be anesthetized and operated upon than it is for him to walk around in his present state.
So what will we do? The short answer is "we don't know for sure." We are going to finish out Graham's stint in rehab as if he doesn't need an operation. We will follow up with Dr. Braga after discharge, gain a better understanding of exactly what surgical options are out there (and their associated risks), and then make an informed decision where we are not under some artificial deadline. We will do what we truly believe is in Graham's best interest, long-term.
Medically, Graham is in a good place. The diabetes insipidous that he contracted as a result of his accident (remember all his sodium problems?) has been largely under control. A very significant change - Graham's stomach no longer looks like this:
 |
| The boy was a human pin-cushion |
Graham no longer gets shots to administer his DDAVP. Instead, he takes pills. Early on during his ICU stay that obviously wasn't an option, since Graham was unable to eat or swallow. And many endocrinologists don't like to give the drug through pills because they feel like you can't see changes in the patient quick enough, making it difficult to know how to adjust the dose. In Graham's case though, the more gradual changes in his body chemistry has been a big blessing.
DDAVP takes the place of a hormone that is produced in your hypothalamus and then stored in and released by your pituitary gland. It effectively works as your bladder valve. Without it, Graham will pee unceasingly. When he would get shots of DDAVP, it would immediately close "the valve" and Graham would not pee for hours and hours and hours, no matter how much he drank. Then, as the drug wore off - all at once - the floodgates were open and Graham turned into a flowing garden hose south of the border. Since being on the pill, however, his urine flow has been much more normal; peeing gradually throughout the day and then "breaking through" more slowly as the drug wears off . It makes the idea of managing his DI at home seem much less daunting to Lindsey and me.
Physically, Graham can just about do it all. Although he hasn't been officially cleared to walk around with out someone holding his hand yet, he can. At times when he forgets "the rules" he can take off unassisted, much to the dismay of Lindsey or myself. So far during his "escapes" or at other times when we have been by his side, he has taken off on a run, climbed a playground toy and gone down a slide, and done a full 360 spin while holding his light saber in his hand. He can bend over and pick things up, and when he does stumble or trip he always catches himself. So while Graham won't be able to participate in P.E. or normal recess for at least a year, physically he should be able to do lots of things to keep himself active and entertained.
Mentally, Graham is making great strides as well. His attention span and focus have improved dramatically. So has his ability to recall information. His short term memory still isn't back to 100%, but it is improving and is in a manageable state. For example - if you I ate a piece of cake for breakfast this morning, we would be able to recall it later in the day. Graham typically doesn't remember those sort of details. However, if you tell him several times at breakfast the thing he needs to remember, he will. Alternatively, if you queue him and give him hints, he will be able to draw those details from his memory. So all the appropriate connections seem to be there in his brain, they just need continued exercise.
Graham's eyesight is another matter. While not severed completely, he definitely has damage to the optic nerve in his right eye, as he still cannot sense light with it. He also has damage to the third cerebral nerve in that eye, meaning he cannot move his eyeball and has very limited ability to even open that eyelid. Graham has asked us about it from time to time, and we tell him that we just need to keep praying that it gets better, but it might not - and that's OK. That's why God gave us two eyes - if anything happens to one, we have another for backup.
The good news is that Graham can actually see better out of his left eye now than he could before his accident. His vision was about 20/200 in that eye before the accident, and is now 20/100. There are certain difficulties that come with losing the vision in your dominant eye the way Graham has. The good news is that his physical therapist at Children's Medical Center in Dallas said that one of the best ways to retrain a weak eye to become dominant is to play golf. So golf therapy it is!
In the upcoming week Graham will actually be enrolled in the Fort Worth Independent School district, and a teacher assigned to the hospital will be Graham's teacher until he is discharged. She will perform grade-level testing on him and then instruct him accordingly, just like if he was going to school back in McKinney. A neuropsychiatrist will perform tests on him as well, and then when he is discharged his teacher here and one of his therapists will meet with his teacher and principal in McKinney to help make sure his needs are met when he gets back to his normal classroom, which should be some time in the next two weeks if all continues to go well.
We are so blessed that Graham has survived and come along as far as he has. If, during the week after Graham's accident, you would have described this level of recovery to Lindsey and me, and then asked 1000 times if we would "take it," the answer would have been yes 1000 times. He is doing better than anyone imagined. He is walking, talking, laughing evidence of the power of prayer and the proof of God's love for us. Thank you all for praying for Graham - it has worked and continues to do so.
Monday, August 18, 2014
Houston Bound??
Graham Update Day 71
Thank-you's, apologies, a close call, and a mad dash to the finish. Lots to talk about in today's blog as Graham's next (praying for it to be the last!) surgery comes together...
First of all, thank you to all those who reached out to Lindsey and me with recommendations of people who could potentially take care of our little Super Hero. Dozens of people contacted us offering up connections, introductions, and even your homes to us. You are such wonderful people and your thoughtfulness and selflessness do not go unnoticed. It really touches us that so many of you are so willing to help Graham at a moment's notice.
Next - my apologies for keeping everyone in the dark for the last week. Remember though that in general no news is good news Please also know that there was a method to my madness.
At the beginning of last week we were waiting for Graham's neurosurgery team in Dallas to pound the pavement and find someone they were comfortable with to do an endoscopic surgery to repair the leaking fracture in the base of Graham's skull. At the same time, my cousin Nick connected us with a neurosurgeon at Texas Children's Hospital in Houston - Dr. William Whitehead. Dr. Whitehead agreed last week to see us this Tuesday for a clinical appointment, as well as tentatively schedule a surgery for the following day, which he would perform with Dr. Carla Giannoni - an ENT surgeon. That they were both willing and able to see us on such notice is nothing short of a miracle. The stars were truly in line for that option to even be a possibility.
Texas Children's is one of the best hospitals in the world and this was certainly a wonderful option, except for the travel. We had hoped that our surgery team in Dallas would be able to find someone just as good who could operate just as soon, but the short story is that it did not happen. So late last week, assuming transport could be arranged (a big "if"), assuming insurance would preapprove things (a bigger "if") and assuming schedules would hold (the biggest "if" of all), we determined that we would go to Houston for Graham to have his surgery done.
At first the plan was very simple - discharge from Cook Children's on Monday (today) with a couple days worth of medication, then Lindsey and I would drive Graham down, we would see Dr. Whitehead at clinic, stay at a hotel, and then show up for surgery and admittance to the hospital on Wednesday morning. The alternative was a hospital-to-hospital transfer, immediate admittance, a visit with Dr. Whitehead during his normal "rounds." Two potential plans of equal merit. Just some paperwork to get in order. The weekend brought trouble though.
To start - Graham started having "dizzy" spells. He said the room would spin and he started acting confused like he didn't know where he was. This was a first and obviously very concerning, so it was all hands on deck. They ordered an MRI, which thankfully turned up normal, and began giving him an antihistamine to help with his sinuses - the suspected source of the problem.
We entered the weekend with these dizzy spells, and nothing "official" on the Cook end of the equation. Insurance was not in the loop, transport was not confirmed, and because of that we didn't know which plan to follow in order to see Dr. Whitehead. The good news was we had the weekend to figure things out. The bad news was that like this don't happen on the weekend. So we were set to leave Monday (today) but we wouldn't know if insurance would authorize it, or anything for that matter, until... Monday (today). And this morning, everything was put in jeopardy by our old nemesis: Graham's sodium.
They check his sodium twice a day at 6:00. This morning it was 153 - 4 points higher than what is considered acceptable limits. And as far a the hospital is concerned - if your patient isn't well, you don't discharge - even to another hospital. In Graham's case that would be a deal-breaker for the week. No transport today. No clinical meeting tomorrow. No surgery on Wednesday. And who knows when those stars would align again? Our best option in Dallas wouldn't be available until October, roughly. And in addition to the sodium, there was the issue of the dizzy-spells. Was it really safe for Lindsey and I to transport Graham ourselves, given the recent changes in his health? We told the doctors this morning that we didn't think it was.
So we were on the clock to get his transport figured out and his sodium back in line: at 8:00 we found out that if Graham's sodium was not within normal limits (under 150) by 11:00, he would not be able to leave today, and everything would be off. They "prescribed" him an additional 8 ounces of fluid to help bring his sodium down, but when I checked his urine output (yes, we measure every one) from the time of his sodium check, I saw even with the additional 8 ounces, he would still be fluid-negative on the day. So Lindsey and I "ordered" him to drink an additional 16 ounces instead of 8. And as I was walking down the hall while Graham was in PT, I felt strongly that I needed to tell his therapist to push the liquids on Graham, so they would have time to enter his bloodstream. So I interrupted his therapy, she obliged, and together we got Graham to drink a total of 31 ounces by 10:30. They poked his finger at 10:45, drew a small vial of blood, and sent it to the lab.
The next 45 minutes were excruciating. Our amazing case manager and nurse practitioner continued to work non-stop to get everything coordinated, and yet this simple sodium lab could blow the whole thing up. At 11:30 it came back: Graham's sodium was 149. Not a point to spare. But game on!
From then on things slowly started to come together. Graham's doctors agreed that a parent-transport would be unsafe, and everyone started working on a hospital to hospital transport. Dr. Whitehead agreed to officially admit Graham today. Insurance approved the transport - but not by vehicle. They felt it was to long of a drive from Fort Worth to Houston. So transport would be by plane. Cook's EMT Jet was available, and got approved by insurance. Finally, a bed opened at Cook Children's, and at 6:00 this evening Graham and Lindsey took off and made their way to Houston. I'll join them there late tomorrow night, and we'll be there for Graham when he goes in for surgery Wednesday morning.
This last week has been full of uncertainly and full of stress. But it was more than worth it. Graham is resting easy with his mom at his side at one of the best hospitals in the world. He is being spared from getting the top of his skull removed and enduring a very risky and invasive surgery. And somehow, someway, everything moved at medicine's equivalent of light speed to get Graham where he needs to be. Henry B. Eyring said that nothing will surprise us more when we leave this life than to see just how familiar God is to us, and "just how much he was involved in our everyday lives." It would be easy to call the happenings of the last week a series of fortunate events. But I know they are the well-thought-out plan of a loving God and the answer to lots of prayers. The fact that Graham is in Houston now? Just add it to a growing list of miracles that he has lived through during the last two and a half months. Thank you all for your prayers, and I'll keep you updated until his surgery Wednesday and throughout the week.
Thank-you's, apologies, a close call, and a mad dash to the finish. Lots to talk about in today's blog as Graham's next (praying for it to be the last!) surgery comes together...
First of all, thank you to all those who reached out to Lindsey and me with recommendations of people who could potentially take care of our little Super Hero. Dozens of people contacted us offering up connections, introductions, and even your homes to us. You are such wonderful people and your thoughtfulness and selflessness do not go unnoticed. It really touches us that so many of you are so willing to help Graham at a moment's notice.
Next - my apologies for keeping everyone in the dark for the last week. Remember though that in general no news is good news Please also know that there was a method to my madness.
At the beginning of last week we were waiting for Graham's neurosurgery team in Dallas to pound the pavement and find someone they were comfortable with to do an endoscopic surgery to repair the leaking fracture in the base of Graham's skull. At the same time, my cousin Nick connected us with a neurosurgeon at Texas Children's Hospital in Houston - Dr. William Whitehead. Dr. Whitehead agreed last week to see us this Tuesday for a clinical appointment, as well as tentatively schedule a surgery for the following day, which he would perform with Dr. Carla Giannoni - an ENT surgeon. That they were both willing and able to see us on such notice is nothing short of a miracle. The stars were truly in line for that option to even be a possibility.
Texas Children's is one of the best hospitals in the world and this was certainly a wonderful option, except for the travel. We had hoped that our surgery team in Dallas would be able to find someone just as good who could operate just as soon, but the short story is that it did not happen. So late last week, assuming transport could be arranged (a big "if"), assuming insurance would preapprove things (a bigger "if") and assuming schedules would hold (the biggest "if" of all), we determined that we would go to Houston for Graham to have his surgery done.
At first the plan was very simple - discharge from Cook Children's on Monday (today) with a couple days worth of medication, then Lindsey and I would drive Graham down, we would see Dr. Whitehead at clinic, stay at a hotel, and then show up for surgery and admittance to the hospital on Wednesday morning. The alternative was a hospital-to-hospital transfer, immediate admittance, a visit with Dr. Whitehead during his normal "rounds." Two potential plans of equal merit. Just some paperwork to get in order. The weekend brought trouble though.
To start - Graham started having "dizzy" spells. He said the room would spin and he started acting confused like he didn't know where he was. This was a first and obviously very concerning, so it was all hands on deck. They ordered an MRI, which thankfully turned up normal, and began giving him an antihistamine to help with his sinuses - the suspected source of the problem.
We entered the weekend with these dizzy spells, and nothing "official" on the Cook end of the equation. Insurance was not in the loop, transport was not confirmed, and because of that we didn't know which plan to follow in order to see Dr. Whitehead. The good news was we had the weekend to figure things out. The bad news was that like this don't happen on the weekend. So we were set to leave Monday (today) but we wouldn't know if insurance would authorize it, or anything for that matter, until... Monday (today). And this morning, everything was put in jeopardy by our old nemesis: Graham's sodium.
They check his sodium twice a day at 6:00. This morning it was 153 - 4 points higher than what is considered acceptable limits. And as far a the hospital is concerned - if your patient isn't well, you don't discharge - even to another hospital. In Graham's case that would be a deal-breaker for the week. No transport today. No clinical meeting tomorrow. No surgery on Wednesday. And who knows when those stars would align again? Our best option in Dallas wouldn't be available until October, roughly. And in addition to the sodium, there was the issue of the dizzy-spells. Was it really safe for Lindsey and I to transport Graham ourselves, given the recent changes in his health? We told the doctors this morning that we didn't think it was.
So we were on the clock to get his transport figured out and his sodium back in line: at 8:00 we found out that if Graham's sodium was not within normal limits (under 150) by 11:00, he would not be able to leave today, and everything would be off. They "prescribed" him an additional 8 ounces of fluid to help bring his sodium down, but when I checked his urine output (yes, we measure every one) from the time of his sodium check, I saw even with the additional 8 ounces, he would still be fluid-negative on the day. So Lindsey and I "ordered" him to drink an additional 16 ounces instead of 8. And as I was walking down the hall while Graham was in PT, I felt strongly that I needed to tell his therapist to push the liquids on Graham, so they would have time to enter his bloodstream. So I interrupted his therapy, she obliged, and together we got Graham to drink a total of 31 ounces by 10:30. They poked his finger at 10:45, drew a small vial of blood, and sent it to the lab.
The next 45 minutes were excruciating. Our amazing case manager and nurse practitioner continued to work non-stop to get everything coordinated, and yet this simple sodium lab could blow the whole thing up. At 11:30 it came back: Graham's sodium was 149. Not a point to spare. But game on!
From then on things slowly started to come together. Graham's doctors agreed that a parent-transport would be unsafe, and everyone started working on a hospital to hospital transport. Dr. Whitehead agreed to officially admit Graham today. Insurance approved the transport - but not by vehicle. They felt it was to long of a drive from Fort Worth to Houston. So transport would be by plane. Cook's EMT Jet was available, and got approved by insurance. Finally, a bed opened at Cook Children's, and at 6:00 this evening Graham and Lindsey took off and made their way to Houston. I'll join them there late tomorrow night, and we'll be there for Graham when he goes in for surgery Wednesday morning.
 |
| Graham's team of 5 loading him on the plan while mom snaps some photos |
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| Load him up! |
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| And time to relax |
This last week has been full of uncertainly and full of stress. But it was more than worth it. Graham is resting easy with his mom at his side at one of the best hospitals in the world. He is being spared from getting the top of his skull removed and enduring a very risky and invasive surgery. And somehow, someway, everything moved at medicine's equivalent of light speed to get Graham where he needs to be. Henry B. Eyring said that nothing will surprise us more when we leave this life than to see just how familiar God is to us, and "just how much he was involved in our everyday lives." It would be easy to call the happenings of the last week a series of fortunate events. But I know they are the well-thought-out plan of a loving God and the answer to lots of prayers. The fact that Graham is in Houston now? Just add it to a growing list of miracles that he has lived through during the last two and a half months. Thank you all for your prayers, and I'll keep you updated until his surgery Wednesday and throughout the week.
Tuesday, August 12, 2014
So about that brain surgery...
Graham Update Day 65 (8/12/14)
For those that have been following Graham's progress, you know that today is the day he was scheduled to be transported back to Children's Medical Center of Dallas to have his brain surgery done. That's not happening - for now.
Dr. Braga called me late last week to let me know that he thought there might be someone in Dallas who could repair the leak that goes from the base of Graham's skull through into the sphenoid sinus by going in endoscopically through the nose as opposed to opening Graham's skull up again. His plan was to try to find that "someone" over the weekend and determine if the fix might be possible. It's looking more and more like it will be. My cousin actually connected us with a pediatric neurosurgeon at Texas Children's Hospital in Houston who does basilar skull repairs endoscopically. He has agreed to set an appointment to meet with us, review Graham's records, and perform the surgery the following day. I was texting Dr. Braga today and he said he is close to having someone in town available to do it, and should be able to let me know tomorrow.
So the short story is that Graham's surgery tomorrow has been postponed/cancelled. We are continuing on as normal here at Cook Children's Hospital in Fort Wort. And one way or another - either in Houston or Dallas - it looks like we will be able to get Graham all fixed up without opening up his skull and performing a VERY invasive surgery. It is a huge relief (knock on wood) and an immense blessing. I'm so grateful that Dr. Braga (And Dr. Honeycutt here) looked at Graham's case with Graham's best interest in mind. They worked without any egos and asked the question - what is best for Graham? - and set to work to make it happen. I know that for me personally, when there is something that crosses my path at work that needs to be down, I put my head down and do it myself. I'm grateful that there are people in the world who DON'T think like I do all the time.
We continue to be extremely impressed with everyone on the rehab floor at Cook Children's. They were the ones who caught the leak in Graham's skull in the first place. Then yesterday in one of Graham's therapy sessions, his therapist noticed that something with Graham was just a little "off." He seemed a little dazed and confused. Unsure of where he was. She could have powered through his session and moved on to the next kid, but instead she alerted the medical staff.
Within minutes they were drawing blood for labs, bringing in nurses to do exams, and scheduling an MRI. It was nerve racking to say the least, but it turned out to be much-ado about nothing. His labs didn't turn up anything abnormal, and his MRI results actually came with a pleasant surprise. A nurse practitioner was reviewing the notes on the MRI with me this morning, and nothing looks out of place. In fact, the MRI notes indicated that his brain shows a lot of healing since his last MRI, which took place less than two weeks ago. She said he is an amazing boy and that his healing really is a thing of wonder.
So we will be in surgical limbo for a while, but that's OK. We are 100% confident that the right choices are being made, and we are OK with waiting for a while to make sure things are done in the best way possible. It sames like only a few days ago that we were in the ICU asking when Graham's first surgery would be, and the answer just kept coming back "1-2 weeks." That surgery turned out to be a huge success, and it taught us to trust and allow for the time it takes to make sure things are well-planned and properly coordinated.
Thank you all for your continued prayers and support. Many of you reached out to us to offer advice and recommendations for people who could help with Graham's surgery. We are so grateful for you and grateful to know that if for some reason we couldn't get things done in Texas, that there are other places we could go to get Graham the treatment he needs. We are so blessed to have such great friends, family, and others who care so much for our sweet little Graham. Thank you.
For those that have been following Graham's progress, you know that today is the day he was scheduled to be transported back to Children's Medical Center of Dallas to have his brain surgery done. That's not happening - for now.
Dr. Braga called me late last week to let me know that he thought there might be someone in Dallas who could repair the leak that goes from the base of Graham's skull through into the sphenoid sinus by going in endoscopically through the nose as opposed to opening Graham's skull up again. His plan was to try to find that "someone" over the weekend and determine if the fix might be possible. It's looking more and more like it will be. My cousin actually connected us with a pediatric neurosurgeon at Texas Children's Hospital in Houston who does basilar skull repairs endoscopically. He has agreed to set an appointment to meet with us, review Graham's records, and perform the surgery the following day. I was texting Dr. Braga today and he said he is close to having someone in town available to do it, and should be able to let me know tomorrow.
So the short story is that Graham's surgery tomorrow has been postponed/cancelled. We are continuing on as normal here at Cook Children's Hospital in Fort Wort. And one way or another - either in Houston or Dallas - it looks like we will be able to get Graham all fixed up without opening up his skull and performing a VERY invasive surgery. It is a huge relief (knock on wood) and an immense blessing. I'm so grateful that Dr. Braga (And Dr. Honeycutt here) looked at Graham's case with Graham's best interest in mind. They worked without any egos and asked the question - what is best for Graham? - and set to work to make it happen. I know that for me personally, when there is something that crosses my path at work that needs to be down, I put my head down and do it myself. I'm grateful that there are people in the world who DON'T think like I do all the time.
We continue to be extremely impressed with everyone on the rehab floor at Cook Children's. They were the ones who caught the leak in Graham's skull in the first place. Then yesterday in one of Graham's therapy sessions, his therapist noticed that something with Graham was just a little "off." He seemed a little dazed and confused. Unsure of where he was. She could have powered through his session and moved on to the next kid, but instead she alerted the medical staff.
Within minutes they were drawing blood for labs, bringing in nurses to do exams, and scheduling an MRI. It was nerve racking to say the least, but it turned out to be much-ado about nothing. His labs didn't turn up anything abnormal, and his MRI results actually came with a pleasant surprise. A nurse practitioner was reviewing the notes on the MRI with me this morning, and nothing looks out of place. In fact, the MRI notes indicated that his brain shows a lot of healing since his last MRI, which took place less than two weeks ago. She said he is an amazing boy and that his healing really is a thing of wonder.
So we will be in surgical limbo for a while, but that's OK. We are 100% confident that the right choices are being made, and we are OK with waiting for a while to make sure things are done in the best way possible. It sames like only a few days ago that we were in the ICU asking when Graham's first surgery would be, and the answer just kept coming back "1-2 weeks." That surgery turned out to be a huge success, and it taught us to trust and allow for the time it takes to make sure things are well-planned and properly coordinated.
Thank you all for your continued prayers and support. Many of you reached out to us to offer advice and recommendations for people who could help with Graham's surgery. We are so grateful for you and grateful to know that if for some reason we couldn't get things done in Texas, that there are other places we could go to get Graham the treatment he needs. We are so blessed to have such great friends, family, and others who care so much for our sweet little Graham. Thank you.
Sunday, August 10, 2014
Prayers By Graham
Graham Update Day 63 (8/10/14)
Graham's accident is a parent's worst nightmare. When I saw him laying in the neighbor's driveway after his head was run over, I cannot describe the horror, fear, and anguish that I felt. But from that time, with a lot of prayer, a lot of love, and many blessings from our Heavenly Father, our burden as a family has been lightened, we have been comforted, and Graham has been blessed with a miraculous recovery. Don't get me wrong - I wouldn't wish this on anyone, and I am not strong enough to say I would do it again if faced with the choice to do it over. I absolutely would not. But we are better as people for having lived through this. We have had so many deep spiritual experiences that no matter the end result, our family is on a better trajectory now than we were before, both as individuals and together. And leading the way, as always, is Graham. His first week in therapy here at Cook Children's, he paused in the middle of his exercises to ask Heavenly Father for help. He is an amazing example of faith. And last night, he proved again that he is faithful, charitable, and wise beyond his six years.
I am not the best father in the world. Our scripture reading is inconsistent at best. There are plenty of people who are more involved with their kids. Who play more with their kids. Who are better teachers to their kids. But I try. And one thing of which I have made a point in teaching my kids is to pray "with feeling." In other words, when my kids pray I teach them not to go through the motions and say repetitive words. But that when they pray they should be feeling - a lot - and speaking accordingly. So whenever I tuck them in at night I always remind them - "Don't forget to pray...." and they respond "with feeling!"
So last night I was sitting in a chair next to Graham messing around on the computer while he watched a movie. Out of nowhere, Graham said:
"Dad, please oh please can we say a prayer with feeling?"
When a six year-old asks for anything by saying "please oh please," the answer is yes. So I obliged and knelt down next to his bed. And this was Graham's Prayer:
"Dear Heavenly Father,
Please bless everyone to know that Satan is real. And Heavenly Father, please protect our spirits. In the name of Jesus Christ, Amen."
Very short. Very sweet. Very profound. Things that I have, unfortunately, never directly taught him as a father. In a world today that teaches that there is no wrong, that everything short of murder and abuse is justified, it is amazing that a six-year old boy recognizes that:
(1) there is a real influence out there that wishes us bad. The great deceiver wants us to make choices that will make us unhappy in this life and in the life to come. And
(2) That there is a more powerful influence out there who is just as real. He is our Heavenly Father. He loves us, and he has the power to protect us. He won't always protect our bodies from accidents, illness, and the choices that others make with their agency. But he will always protect our spirits. He will always help us to learn, become better, and make the most of the things that happen to us in life. He WILL protect our spirits. Those can be untouchable if we choose, and if we ask.
This morning Graham's prayer was again equal parts simple, sweet, and sincere:
"Dear Heavenly Father,
Please bless everyone to have a good and pleasant summer. In The name of Jesus Christ, Amen."
Here is a boy who is undoubtedly getting stir crazy. He asks "can we please go back home to McKinney, Texas?" several times each day. And yet his morning prayer reflects his nature - always concerned with the welfare of others, while ultimately content with the cards that life has dealt to him. So to everyone readying - please have a good and pleasant summer!
I am so grateful that, like Graham, so many of you have taken the time to pray for someone else. You have offered up your feelings and so much more for Graham and our family. And I am very grateful that God has preserved Graham's life, because he is an amazing little boy, and I really feel like the world is a better place with him in it.
Graham's accident is a parent's worst nightmare. When I saw him laying in the neighbor's driveway after his head was run over, I cannot describe the horror, fear, and anguish that I felt. But from that time, with a lot of prayer, a lot of love, and many blessings from our Heavenly Father, our burden as a family has been lightened, we have been comforted, and Graham has been blessed with a miraculous recovery. Don't get me wrong - I wouldn't wish this on anyone, and I am not strong enough to say I would do it again if faced with the choice to do it over. I absolutely would not. But we are better as people for having lived through this. We have had so many deep spiritual experiences that no matter the end result, our family is on a better trajectory now than we were before, both as individuals and together. And leading the way, as always, is Graham. His first week in therapy here at Cook Children's, he paused in the middle of his exercises to ask Heavenly Father for help. He is an amazing example of faith. And last night, he proved again that he is faithful, charitable, and wise beyond his six years.
I am not the best father in the world. Our scripture reading is inconsistent at best. There are plenty of people who are more involved with their kids. Who play more with their kids. Who are better teachers to their kids. But I try. And one thing of which I have made a point in teaching my kids is to pray "with feeling." In other words, when my kids pray I teach them not to go through the motions and say repetitive words. But that when they pray they should be feeling - a lot - and speaking accordingly. So whenever I tuck them in at night I always remind them - "Don't forget to pray...." and they respond "with feeling!"
So last night I was sitting in a chair next to Graham messing around on the computer while he watched a movie. Out of nowhere, Graham said:
"Dad, please oh please can we say a prayer with feeling?"
When a six year-old asks for anything by saying "please oh please," the answer is yes. So I obliged and knelt down next to his bed. And this was Graham's Prayer:
"Dear Heavenly Father,
Please bless everyone to know that Satan is real. And Heavenly Father, please protect our spirits. In the name of Jesus Christ, Amen."
Very short. Very sweet. Very profound. Things that I have, unfortunately, never directly taught him as a father. In a world today that teaches that there is no wrong, that everything short of murder and abuse is justified, it is amazing that a six-year old boy recognizes that:
(1) there is a real influence out there that wishes us bad. The great deceiver wants us to make choices that will make us unhappy in this life and in the life to come. And
(2) That there is a more powerful influence out there who is just as real. He is our Heavenly Father. He loves us, and he has the power to protect us. He won't always protect our bodies from accidents, illness, and the choices that others make with their agency. But he will always protect our spirits. He will always help us to learn, become better, and make the most of the things that happen to us in life. He WILL protect our spirits. Those can be untouchable if we choose, and if we ask.
This morning Graham's prayer was again equal parts simple, sweet, and sincere:
"Dear Heavenly Father,
Please bless everyone to have a good and pleasant summer. In The name of Jesus Christ, Amen."
Here is a boy who is undoubtedly getting stir crazy. He asks "can we please go back home to McKinney, Texas?" several times each day. And yet his morning prayer reflects his nature - always concerned with the welfare of others, while ultimately content with the cards that life has dealt to him. So to everyone readying - please have a good and pleasant summer!
I am so grateful that, like Graham, so many of you have taken the time to pray for someone else. You have offered up your feelings and so much more for Graham and our family. And I am very grateful that God has preserved Graham's life, because he is an amazing little boy, and I really feel like the world is a better place with him in it.
Saturday, August 9, 2014
Brain Surgery is Scheduled
Graham Update Day 62 (8/9/14)
It's hard to believe that 2 months ago today Graham's head was run over and crushed by an SUV. He has come so far, and continues to get a little bit better every day. He does have another brain surgery coming up, and we are hopeful that he will be able to maintain his momentum after the operation. In this update I'll discuss some of the progress that he is making, as well as discuss the surgery and one possible alternative to opening up Graham's skull again which may arise....
In terms of Graham's therapy, he is making huge strides, especially with his short-term memory. 10 days ago he was really "10-second-Tommy," meaning he would pretty much forget anything that happened even a short while before. With some drilling and pressure he would remember things, but a question as simple as "what did you do in gym (that's what we call physical therapy) five minutes ago" was impossible for him to answer. He didn't remember his therapists names, and unless you had really drilled it into him, he certainly couldn't remember anything from the day before.
All that has changed now. He knows his therapists by name. He remembers the name of one of his little friends and fellow-patients here. Today he came back from occupational therapy and said "Dad! We had a water gun war!" It's very relieving to see him recover in that respect, as his short term memory, probably more than anything else at this point, will go a long way towards him returning to and succeeding in school. Another good sign? His reaction-time and hand-eye coordination, captured in this picture below.
Graham is making great strides physically as well. When Graham first arrived at Cook Children's, he was on orders to not walk at all unless someone was holding on to the gate-belt around his waste. Last week that changed - he is now free to walk around simply holding somebody's hand. And were it not for the impending surgery, Graham's physical therapist said she would release him for "standby" walking, meaning he would be free to walk completely unassisted as long as someone was close by. He can bend over and pick things up off the floor without falling - another huge improvement.
Graham senses the improvement as well. For a while he would talk about how he was in the hospital "to find get his balance back." He was reluctant to walk without help. Now he is constantly trying to release our hand when walking, and occasionally when he gets excited he even tries to run.
The big mountain ahead of us now is Graham's next brain surgery. He is leaking fluid into his "dirty" sphenoid sinus (pictured below), which means he is at great risk for bacteria to find its way from the sphenoid sinus back to his brain, causing meningitis. So they are going in to plug the hole from the base of his skull into his sinus. I'm no radiologist, but I think you can even see the hole in the image of Graham's brain below. (Doctors feel free to laugh at me if I am wrong)
Dr. Braga, who did Graham's first surgery, will perform this one as well. The neurosurgeon here, Dr. Honeycutt (awesome man), said that there are certain advantages to Dr. Braga doing it, so that's what we will do. He will open Graham's skull along his existing scar-line - a wave-like incision from ear to ear across the top of Graham's head. He will then remove the top of Graham's skull, push on the brain enough to expose the leak, and plug it up - likely with a plate.
It will be significantly more "invasive" that Graham's first surgery, so naturally we are praying extra hard that all goes well. But there is a very small chance that the surgery won't even happen. I'll explain:
When Dr. Braga first looked at Graham's CT Scans and MRIs from here at cook, he agreed with Dr. Honeycutt that the surgery needed to be done and scheduled it. In looking back at the images and in discussing it with his colleagues, however, he decided there was a chance that maybe they would not need to open up Graham's skull at all, but that perhaps an Ear/Nose/Throat (ENT) surgeon could plug the leak by going in through the nose lapriscopically. He said there used to be a doctor at Children's who he thinks could do it, but that doctor is not there anymore. So Dr. Braga and the other brain surgeons in his group are going to see if there is someone else in DFW who feels they would have a high probability of success in plugging Graham's leak lapriscopically. If they do, then we will start consulting with THAT surgeon and will inevitably have to transfer to a different hospital for the surgery, and then come back to Cook Children's again for rehab. I discussed this with my sister, and she brought up a great point - what if there isn't someone who could do it in DFW, but there is in Houston? or New York? I know from talking to the EMT who brought Graham from Children's to Cook that they transport internationally, so perhaps there is a doctor out there somewhere who could perform the operation with a high likelihood of success. If there is, I know we can get him there. So if any of you know any ENT surgeon-gurus who want to look at some CT scans and MRIs, feel free to let me know. =)
So unless someone comes forth from the woodwork and says "I can plug up that leak in the base of Graham's skull by going in through his nose!" surgery will be Wednesday. Thank you all for your prayers - we know it is a combination of expert medicine and a loving Heavenly Father who have brought Graham this far. On Wednesday Graham faces his most invasive and risky surgery yet , so we will be praying for steady hands and no complications.
It's hard to believe that 2 months ago today Graham's head was run over and crushed by an SUV. He has come so far, and continues to get a little bit better every day. He does have another brain surgery coming up, and we are hopeful that he will be able to maintain his momentum after the operation. In this update I'll discuss some of the progress that he is making, as well as discuss the surgery and one possible alternative to opening up Graham's skull again which may arise....
In terms of Graham's therapy, he is making huge strides, especially with his short-term memory. 10 days ago he was really "10-second-Tommy," meaning he would pretty much forget anything that happened even a short while before. With some drilling and pressure he would remember things, but a question as simple as "what did you do in gym (that's what we call physical therapy) five minutes ago" was impossible for him to answer. He didn't remember his therapists names, and unless you had really drilled it into him, he certainly couldn't remember anything from the day before.
All that has changed now. He knows his therapists by name. He remembers the name of one of his little friends and fellow-patients here. Today he came back from occupational therapy and said "Dad! We had a water gun war!" It's very relieving to see him recover in that respect, as his short term memory, probably more than anything else at this point, will go a long way towards him returning to and succeeding in school. Another good sign? His reaction-time and hand-eye coordination, captured in this picture below.
Graham is making great strides physically as well. When Graham first arrived at Cook Children's, he was on orders to not walk at all unless someone was holding on to the gate-belt around his waste. Last week that changed - he is now free to walk around simply holding somebody's hand. And were it not for the impending surgery, Graham's physical therapist said she would release him for "standby" walking, meaning he would be free to walk completely unassisted as long as someone was close by. He can bend over and pick things up off the floor without falling - another huge improvement.
Graham senses the improvement as well. For a while he would talk about how he was in the hospital "to find get his balance back." He was reluctant to walk without help. Now he is constantly trying to release our hand when walking, and occasionally when he gets excited he even tries to run.
The big mountain ahead of us now is Graham's next brain surgery. He is leaking fluid into his "dirty" sphenoid sinus (pictured below), which means he is at great risk for bacteria to find its way from the sphenoid sinus back to his brain, causing meningitis. So they are going in to plug the hole from the base of his skull into his sinus. I'm no radiologist, but I think you can even see the hole in the image of Graham's brain below. (Doctors feel free to laugh at me if I am wrong)
Dr. Braga, who did Graham's first surgery, will perform this one as well. The neurosurgeon here, Dr. Honeycutt (awesome man), said that there are certain advantages to Dr. Braga doing it, so that's what we will do. He will open Graham's skull along his existing scar-line - a wave-like incision from ear to ear across the top of Graham's head. He will then remove the top of Graham's skull, push on the brain enough to expose the leak, and plug it up - likely with a plate.
It will be significantly more "invasive" that Graham's first surgery, so naturally we are praying extra hard that all goes well. But there is a very small chance that the surgery won't even happen. I'll explain:
When Dr. Braga first looked at Graham's CT Scans and MRIs from here at cook, he agreed with Dr. Honeycutt that the surgery needed to be done and scheduled it. In looking back at the images and in discussing it with his colleagues, however, he decided there was a chance that maybe they would not need to open up Graham's skull at all, but that perhaps an Ear/Nose/Throat (ENT) surgeon could plug the leak by going in through the nose lapriscopically. He said there used to be a doctor at Children's who he thinks could do it, but that doctor is not there anymore. So Dr. Braga and the other brain surgeons in his group are going to see if there is someone else in DFW who feels they would have a high probability of success in plugging Graham's leak lapriscopically. If they do, then we will start consulting with THAT surgeon and will inevitably have to transfer to a different hospital for the surgery, and then come back to Cook Children's again for rehab. I discussed this with my sister, and she brought up a great point - what if there isn't someone who could do it in DFW, but there is in Houston? or New York? I know from talking to the EMT who brought Graham from Children's to Cook that they transport internationally, so perhaps there is a doctor out there somewhere who could perform the operation with a high likelihood of success. If there is, I know we can get him there. So if any of you know any ENT surgeon-gurus who want to look at some CT scans and MRIs, feel free to let me know. =)
So unless someone comes forth from the woodwork and says "I can plug up that leak in the base of Graham's skull by going in through his nose!" surgery will be Wednesday. Thank you all for your prayers - we know it is a combination of expert medicine and a loving Heavenly Father who have brought Graham this far. On Wednesday Graham faces his most invasive and risky surgery yet , so we will be praying for steady hands and no complications.
Tuesday, August 5, 2014
Still waiting for surgery details...
Graham Update Day 58 (8/5/14)
Quick update tonight as we continue to wait on details of when and where Graham's next brain surgery will be. We do have a few interesting details to share....
This next surgery will be more invasive than the previous one. Putting a plate under the brain and securing it in the base of the skull is pretty tricky. Unlike in cartoons, the brain doesn't lift out of the skull very easily. One positive is that they will be able to use the same incision line as before, so hopefully the scarring is at a minimum.
We are not all that sure yet as to how the two surgeons' approaches will differ. About the only thing we know now is that the Surgeon at Cook Children's would use titanium plates, while Dr. Braga at Children's Medical Center uses plates that dissolve over the course of about a year.
We asked the therapists today "If Graham did NOT have to get a surgery done, how much longer do you estimate he would remain here at the hospital?" Answer: 3-4 weeks. So with the surgery, we are probably looking at mid- to late-September before Graham can come home. That is obviously a lot longer than we thought. Back when we went to the first rehab place they estimated Graham's stay at that time would be 1-2 weeks, would would have put us home by now. Cook Children's takes a different approach, obviously. They base their decision on when to discharge Graham on two factors: Is it safe for Graham to be home, and is he progressing in his rehab or has he plateaued? The good news is that Graham is making great strides both mentally and physically, which leads them to think that a longer stay will be advantageous to him.
We are so blessed that Graham has come as far as he has. We know he will fight through this, and we know that we are being blessed tremendously by God because of all those who pray for him. Thank you so much, and we hope to have more to report on soon!
Quick update tonight as we continue to wait on details of when and where Graham's next brain surgery will be. We do have a few interesting details to share....
This next surgery will be more invasive than the previous one. Putting a plate under the brain and securing it in the base of the skull is pretty tricky. Unlike in cartoons, the brain doesn't lift out of the skull very easily. One positive is that they will be able to use the same incision line as before, so hopefully the scarring is at a minimum.
We are not all that sure yet as to how the two surgeons' approaches will differ. About the only thing we know now is that the Surgeon at Cook Children's would use titanium plates, while Dr. Braga at Children's Medical Center uses plates that dissolve over the course of about a year.
We asked the therapists today "If Graham did NOT have to get a surgery done, how much longer do you estimate he would remain here at the hospital?" Answer: 3-4 weeks. So with the surgery, we are probably looking at mid- to late-September before Graham can come home. That is obviously a lot longer than we thought. Back when we went to the first rehab place they estimated Graham's stay at that time would be 1-2 weeks, would would have put us home by now. Cook Children's takes a different approach, obviously. They base their decision on when to discharge Graham on two factors: Is it safe for Graham to be home, and is he progressing in his rehab or has he plateaued? The good news is that Graham is making great strides both mentally and physically, which leads them to think that a longer stay will be advantageous to him.
We are so blessed that Graham has come as far as he has. We know he will fight through this, and we know that we are being blessed tremendously by God because of all those who pray for him. Thank you so much, and we hope to have more to report on soon!
Saturday, August 2, 2014
Surgery Details, Memories, and a Big Race
Graham Update Day 55 (8/2/14)
In response to receiving MANY questions by phone, text, email, and social media, I wanted to do a very quick update tonight to share all the details that we know about Graham's next brain surgery. I'll also share some interesting tidbits about memories that Graham is recalling, and mention a big race that is coming up on October 4th...
So here is what we know about Graham's surgery - NOT MUCH!
I bring that up because Graham can still recall the words - ball, lion, carrot - that I told him to remember earlier this week. Only twice has he incorrectly recalled the words, and when he did he said "ball, lion, PLATE," recalling what I told him only once up on the Neurosurgery Floor at Children's hospital. It was the first thing that Graham actively recalled from his memory that came from his stay at Children's. But it hasn't been the only one. On the way back from his CT scan, the nurse asked Graham what floor he was on. We are on the fourth floor here. But Graham's answer? D-10 - the floor of his room back on the Neurosurgery floor at Children's. But here is where it gets downright crazy. I went back and read Graham's journal to get these details correct:
On June 23, 14 days after Graham's accident and 4 days before his first brain surgery, Graham was not walking. He had said a handful of words, and the most robust physical activity he had performed was to sit up with A LOT of assistance on the edge of his bed. He could occasionally communicate by giving a thumbs up. He'd had his ventilator removed just 4 days prior, and he still had his feeding tube in. On June 23, Graham had the EVD, or brain drain, removed from his skull.
Fast forward to today - Lindsey asked Graham if he was in any pain. He said "a little." Lindsey asked where the pain was. His response: "You know - where my IV was. In my head," and he pointed to the area where his EVD had been. It makes me wonder - what other memories, contained deep in the recesses of his traumatized brain, will manifest themselves in the coming days, weeks, and months?
So Graham's memory is improving. He is becoming more and more like himself - modest around the nurses, scared of heights and scared to be alone. And we also had a first today: while watching Despicable Me 2, Graham laughed for this first time since his accident. And it wasn't a chuckle. It was a full-on, silly, giggly, 6 year-old belly laugh. Graham is normally a fairly quiet guy. He likes to sit and play Legos or chill out and chat, like we did today:
But occasionally Graham likes to get silly to-the-max, and seeing that side of him again was downright glorious.
Some amazing people are doing some amazing things for Graham. There was Prayers4Graham night at Chili's in Boise. Countless kids doing fundraisers. Our ward at church being our rock. Amazing friends setting up a fund for his recovery. A sports talk radio host doing a segment about Graham, and family traveling from far across the country to be with us and help out at home. Thousands of people praying for his recovery.
Another person has done something amazing- she has gotten together with Cooper Fitness in McKinney Texas and organized a 5k and Fun Run for Graham. It's called the Little Fighter 5k, and you can read all about it here:
https://www.facebook.com/pages/Little-Fighter-5K-1-Mile-Fun-Run-Fundraiser/655524297876867
Thank you Kelly for doing this for Graham, and thank you to so many who help us in so many ways. We have an unpayable debt to God and to the world. Thank you from the bottom of my heart.
In response to receiving MANY questions by phone, text, email, and social media, I wanted to do a very quick update tonight to share all the details that we know about Graham's next brain surgery. I'll also share some interesting tidbits about memories that Graham is recalling, and mention a big race that is coming up on October 4th...
So here is what we know about Graham's surgery - NOT MUCH!
- The neurosurgeon here, Dr. Honeycutt, discussed his thoughts on the surgery with us on Thursday evening, asking us then for our permission to request that Dr. Braga perform the surgery. He text Dr. Braga that same night, and Dr. Braga, who was in surgery all day yesterday, let him know that he would review the MRI and CT scans as soon as he could. He is, of course, dependent on FedEx to deliver those images (they are just slightly too big for an email), and will be reviewing them this weekend. To that end, we expect to have more details late Monday or early Tuesday.
- With that said, Dr. Honeycutt's preference is to have the surgery done next week. I personally will be somewhat surprised if that happens, given the fact that this is not an emergent procedure.
- As far as how they will stop a leak into Graham's sphenoid sinus - it could be anything from an intracranial soft tissue transplant - similar to how Dr. Braga shored up the leak into Graham's frontal sinus, or it could be inserting a metal plate into the base of his skull to cover the fracture. The latter is what Dr. Honeycutt discussed with us, but nothing is set in stone.
- They will use the same incision line in Graham's scalp as before. We do not know yet how they will get into the brain, but typically they remove the top of the skull.
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Earlier this week I tested Graham's short-term memory by asking him to remember 3 words - Ball. Lion. Carrot. I actually tried that one time before - it was shortly after his first surgery, around the 4th of July, and I asked him to remember the words ball, lion, and PLATE. (Don't ask my balls and lions keep coming to mind!). I then told him a 30-second story, and asked him to recall the words. He did - ball, lion, plate - and I never mentioned THAT set of words again.I bring that up because Graham can still recall the words - ball, lion, carrot - that I told him to remember earlier this week. Only twice has he incorrectly recalled the words, and when he did he said "ball, lion, PLATE," recalling what I told him only once up on the Neurosurgery Floor at Children's hospital. It was the first thing that Graham actively recalled from his memory that came from his stay at Children's. But it hasn't been the only one. On the way back from his CT scan, the nurse asked Graham what floor he was on. We are on the fourth floor here. But Graham's answer? D-10 - the floor of his room back on the Neurosurgery floor at Children's. But here is where it gets downright crazy. I went back and read Graham's journal to get these details correct:
On June 23, 14 days after Graham's accident and 4 days before his first brain surgery, Graham was not walking. He had said a handful of words, and the most robust physical activity he had performed was to sit up with A LOT of assistance on the edge of his bed. He could occasionally communicate by giving a thumbs up. He'd had his ventilator removed just 4 days prior, and he still had his feeding tube in. On June 23, Graham had the EVD, or brain drain, removed from his skull.
Fast forward to today - Lindsey asked Graham if he was in any pain. He said "a little." Lindsey asked where the pain was. His response: "You know - where my IV was. In my head," and he pointed to the area where his EVD had been. It makes me wonder - what other memories, contained deep in the recesses of his traumatized brain, will manifest themselves in the coming days, weeks, and months?
So Graham's memory is improving. He is becoming more and more like himself - modest around the nurses, scared of heights and scared to be alone. And we also had a first today: while watching Despicable Me 2, Graham laughed for this first time since his accident. And it wasn't a chuckle. It was a full-on, silly, giggly, 6 year-old belly laugh. Graham is normally a fairly quiet guy. He likes to sit and play Legos or chill out and chat, like we did today:
But occasionally Graham likes to get silly to-the-max, and seeing that side of him again was downright glorious.
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Some amazing people are doing some amazing things for Graham. There was Prayers4Graham night at Chili's in Boise. Countless kids doing fundraisers. Our ward at church being our rock. Amazing friends setting up a fund for his recovery. A sports talk radio host doing a segment about Graham, and family traveling from far across the country to be with us and help out at home. Thousands of people praying for his recovery.
Another person has done something amazing- she has gotten together with Cooper Fitness in McKinney Texas and organized a 5k and Fun Run for Graham. It's called the Little Fighter 5k, and you can read all about it here:
https://www.facebook.com/pages/Little-Fighter-5K-1-Mile-Fun-Run-Fundraiser/655524297876867
Thank you Kelly for doing this for Graham, and thank you to so many who help us in so many ways. We have an unpayable debt to God and to the world. Thank you from the bottom of my heart.
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