We heard from the hospital PICC team this afternoon. Apparently, arrangements had been made this morning by the GI staff and hospital to have Gracie admitted today at 1pm. The only problem is, no one thought to notify Gracie's parents... um... minor detail people!
All is straightened out now, and thanks to friends willing to pitch in where needed and Nana & Papa being able to come down and help us with Preston, all systems are "go" for admission tomorrow. We had hoped to wait until next Monday - - Gracie would be able to finish out the last two days of school (which she's really been enjoying since the end of her last abdominal migraine) and John has more days off next week (which would make it easier on Preston and each of us could take turns at the hospital). But as timing would have it, Gracie had a rough evening tonight and appears to be starting another pain cycle. Hopefully, this is not the case and she'll be feeling better tomorrow. It has, however, been exactly three weeks since the last cycle started, so she's due...
The plan is that both John and I will take Gracie to be admitted around noon and the line will be placed by late afternoon. He will stay with her the first night and then, starting Wednesday, I will be with her until she's discharged.
I will update as I can...
Monday, June 14, 2010
Friday, June 11, 2010
Foto Friday 2, vol. 14 - "Marshmallow Perfect"
Last Sunday was a beautiful, sunny day - - the kind of day that begged for barely dressed, sunscreen lathered kids to frolic in the yard... a day for water tables to be filled, dumped and refilled.
Though she was slow to start both days of the weekend (I bumped up her night and morning feedings), Gracie was out of her room and ready to play around noon on Sunday. She thoroughly enjoyed the distraction that the water table and bubble gun provided in between feedings. As a bonus, she wore her hat the better part of the afternoon - - a record, indeed!
While waiting for Gracie to come out and play, Preston enjoyed a snack of "cracker stacks" (wheat thins, laughing cow cheese and salami) on the lounge chair. "This is the life," he said as he snacked away. It was, according to him...
And then he played "Rocket Launcher" on my knees...
Later on, he dazzled me with chalk by practicing some of his letters on our brick wall. He's doing really well with this, and even surprised me by alternating between his left and right hand...
Gracie worked her way up and down the sidewalk in her wheelchair... (notice the hat is still on?! And, Kim... notice her tank top?! Thank you!)
To finish off a great day in the late afternoon sunshine, Preston, Gracie and Addison took a wagon ride.
Though she was slow to start both days of the weekend (I bumped up her night and morning feedings), Gracie was out of her room and ready to play around noon on Sunday. She thoroughly enjoyed the distraction that the water table and bubble gun provided in between feedings. As a bonus, she wore her hat the better part of the afternoon - - a record, indeed!
While waiting for Gracie to come out and play, Preston enjoyed a snack of "cracker stacks" (wheat thins, laughing cow cheese and salami) on the lounge chair. "This is the life," he said as he snacked away. It was, according to him...
And then he played "Rocket Launcher" on my knees...
Later on, he dazzled me with chalk by practicing some of his letters on our brick wall. He's doing really well with this, and even surprised me by alternating between his left and right hand...
Gracie worked her way up and down the sidewalk in her wheelchair... (notice the hat is still on?! And, Kim... notice her tank top?! Thank you!)
To finish off a great day in the late afternoon sunshine, Preston, Gracie and Addison took a wagon ride.
Tuesday, June 8, 2010
The TPN Plan
(Warning: I'm tired... I hope I make sense tonight!)
Today we met with Gracie's GI doctor and, after a very long conversation and seemingly endless questions and answers, we came up with a plan.
Gracie will be admitted (date to be determined) to receive a PICC line. This is a line that will be placed peripherally (not a surgery, thus no general anesthesia will be required) to allow us to administer TPN. The site for this catheter should last Gracie about 6 weeks, maybe a bit more. The doctor's hope is that, in those weeks, we can stabilize her digestive system, put some weight on her and then hopefully return to G-tube feedings full time. Since Gracie's always struggled with GI and feeding issues, regardless of her nutritional status, John and I aren't overly optimistic that the six weeks of TPN will "cure" her numerous GI-related issues; nor do we think that the abdominal migraine cycles will stop entirely. At the same time, we would rather not put her under general anesthesia to place the line and attempt TPN if we don't have to. Therefore, we opted to try the less invasive PICC line first. Then, if we, as a team, decide to continue with the TPN, they will place Broviac catheter under anesthesia. Should this be the route we take, we would also be combining a few other pending minor surgical procedures with that single anesthesia.
Gracie will be in the hospital approximate four to five days, during which time they will monitor her TPN intake and build up to her full 14-hour per day regimen that will provide all of her daily nutritional requirements. We will need to continue feeding her small boluses through her G-tube in order to keep her digestive system active and functioning, but the number of feedings/volume per day will be reduced and the nighttime feedings will be completely eliminated. She will still receive all meds via G-tube. Again, John and I don't expect that Gracie's issues will be completely resolved. But, with less pressure to "force feed" her and the ability to back-off the enteral nutrition (through the G-tube) when she is in the throws of a cycle or is sick (because anytime she has any type of illness, it manifests in her gut, too) the faster we can get her through the cycle or illness without compromising her nutritional status.
We have numerous things we are concerned about regarding this proposed regimen - - for starters, how will we keep her happy and connected to an IV for 14 hours a day, especially since when she's feeling well, she doesn't sleep much more than 7 hours in a 24-hour period?! But until we get to that point, we aren't going to borrow trouble by worrying about all the "what-ifs." (Well, we are going to try not to do that.) The bottom line is that we've exhausted every other option - - the pros far outweigh the cons.
As for the abdominal migraines, there is very little research on this subject matter, especially in pediatrics... that has been a challenge for us and so many other families who are struggling to get successful treatment for their children. Furthermore, there are many doctors (even in the most progressive hospitals) who do not recognize the condition as a "real diagnosis" and try to treat it by "knocking out" the patient rather than finding the root of the problem. Gracie's old GI doc (in Sacramento) was progressive in that sense, and truly recognized the problem. However, she was as helpless as we were in finding a solution. Perhaps that is finally going to change. Today we were made aware of a study currently being done by a doctor at CHLA (Children's Hospital Los Angeles) for which Gracie might be a candidate. Stay tuned on this...
Today we met with Gracie's GI doctor and, after a very long conversation and seemingly endless questions and answers, we came up with a plan.
Gracie will be admitted (date to be determined) to receive a PICC line. This is a line that will be placed peripherally (not a surgery, thus no general anesthesia will be required) to allow us to administer TPN. The site for this catheter should last Gracie about 6 weeks, maybe a bit more. The doctor's hope is that, in those weeks, we can stabilize her digestive system, put some weight on her and then hopefully return to G-tube feedings full time. Since Gracie's always struggled with GI and feeding issues, regardless of her nutritional status, John and I aren't overly optimistic that the six weeks of TPN will "cure" her numerous GI-related issues; nor do we think that the abdominal migraine cycles will stop entirely. At the same time, we would rather not put her under general anesthesia to place the line and attempt TPN if we don't have to. Therefore, we opted to try the less invasive PICC line first. Then, if we, as a team, decide to continue with the TPN, they will place Broviac catheter under anesthesia. Should this be the route we take, we would also be combining a few other pending minor surgical procedures with that single anesthesia.
Gracie will be in the hospital approximate four to five days, during which time they will monitor her TPN intake and build up to her full 14-hour per day regimen that will provide all of her daily nutritional requirements. We will need to continue feeding her small boluses through her G-tube in order to keep her digestive system active and functioning, but the number of feedings/volume per day will be reduced and the nighttime feedings will be completely eliminated. She will still receive all meds via G-tube. Again, John and I don't expect that Gracie's issues will be completely resolved. But, with less pressure to "force feed" her and the ability to back-off the enteral nutrition (through the G-tube) when she is in the throws of a cycle or is sick (because anytime she has any type of illness, it manifests in her gut, too) the faster we can get her through the cycle or illness without compromising her nutritional status.
We have numerous things we are concerned about regarding this proposed regimen - - for starters, how will we keep her happy and connected to an IV for 14 hours a day, especially since when she's feeling well, she doesn't sleep much more than 7 hours in a 24-hour period?! But until we get to that point, we aren't going to borrow trouble by worrying about all the "what-ifs." (Well, we are going to try not to do that.) The bottom line is that we've exhausted every other option - - the pros far outweigh the cons.
As for the abdominal migraines, there is very little research on this subject matter, especially in pediatrics... that has been a challenge for us and so many other families who are struggling to get successful treatment for their children. Furthermore, there are many doctors (even in the most progressive hospitals) who do not recognize the condition as a "real diagnosis" and try to treat it by "knocking out" the patient rather than finding the root of the problem. Gracie's old GI doc (in Sacramento) was progressive in that sense, and truly recognized the problem. However, she was as helpless as we were in finding a solution. Perhaps that is finally going to change. Today we were made aware of a study currently being done by a doctor at CHLA (Children's Hospital Los Angeles) for which Gracie might be a candidate. Stay tuned on this...
Friday, June 4, 2010
Foto Friday 2, vol. 13 - Feelin' Good Friday
Gracie had a great, full day at school. She did not crash after her second feeding (as she did on Thursday - - for three and a half hours) and was fairly spunky when I picked her up! So, I decided to take her for a little "beautification." Yes, I could have easily saved the money and given her hair a little trim myself, but my girl loves getting her hair cut and she deserved a something fun that was just about her!
I told her where we were going and she got so excited! She signed, "hair, hair, hair, cut, cut, cut" over and over. She was not thrilled about the ten minute wait, nor the fact that she wasn't allowed to wheel herself all around the salon during that wait, but once it was her turn, she calmed down completely. I told her where to go and she wheeled herself over to the "yellow car" (the taxi-cab chair) and signed, "up." She was ready... ready to take over! Check her out!
After that, we picked Preston up from school - - he, too, had a good day! As he typically does on Fridays, he climbed in the car, stepped over to Gracie's side and said, "Hi, Gracie! How's your day?" My heart always leaps with love and pride as he initiates this exchange, doing his best to sign the words as he says them. They are always so happy to see each other, and when she feels good, like she did today, Gracie signs his name over and over from the time we park until he's in the car and strapped into his car seat.
When we got home, we soaked up the rest of the day's sunshine and played outside for a couple of hours. Giving Gracie a break from the rigorous "force-feeding" regimen for the day was the right thing to do. She deserved today so much... we all did.
Wednesday, June 2, 2010
Glimpses of our girl and the Upper GI
Good news... Gracie has been spotted! We've seen glimpses of our giggly, sassy girl and we sure are happy to see her when she appears! She woke up this morning happy, begging for a bath and asking to get dressed for school. Granted, it was 3:30 in the morning, but still! She had been fasting (for the Upper GI) since about 9:45pm and was, therefore, in a fabulous mood.
Upon arriving at the hospital, she waited with me to check in and then took off, wheeling herself through the lobby to the elevators. Despite my best efforts to explain to her that we were there for pictures of her tummy, she was expecting therapy with Ally or Hema and was furious with me when I told her it was my turn to drive her wheelchair. She was not happy about waiting around, but then was a total trooper during the study itself. Once she understands she's not staying at the hospital, it's amazing how well she does for various procedures - - especially considering all she's already been through and what she's currently going through. She handled the barium well, just a tad over an ounce, but then was extra junky for about thirty minutes afterward.
The radiologist informed me that she definitely does not have SMA (Superior Mesenteric Artery Syndrome) - - that is good news. She did not, during the brief study, reflux any of the barium - - also good news. (She has not shown signs of reflux for the past three Upper GI studies or her last two Gastric Emptying Studies, though many doctors assume the increased secretions following feedings are reflux related. We think otherwise... it's more about her body's response to the discomfort and digestive process. She has great difficulty processing fat and protein, no matter how broken down the formula is. Dr. Grant indicated on Friday that what we describe, coupled with her surgical history, doesn't sound like reflux to him either.) The radiologist confirmed that her Nissen Fundoplication is slipped - - we have known that for years. He confirmed she has caused a Hiatal Hernia - - we have known that for years as well.
Previously, Gracie's team determined that surgery to repair the hernia was not indicated, as the hernia is not that severe. We will see what Dr. Grant and Dr. Idries think... especially since Dr. Grant discussed Gracie's Fundo with me at length on Friday. While he doesn't dismiss the idea of her abdominal migraines cycles and migraine headaches at all, one of his opinions is that Gracie's body has been reacting to the Nissen Fundoplication all these years. The intolerance to feedings and excessive, clear, stringy secretions that she produces for hours on end are common reactions he has seen in children who were, as it turned out, not good candidates for a Fundoplication. Gracie's Fundo was done at seven weeks (due to repeated vomiting and reflux which caused aspiration pneumonia), so we have no way of comparing the before and after. We do know this... the cycles are predictable and come in waves, so while the issue with the Fundo could be exacerbating the problem, we don't believe it is the only problem. And really, we still don't know what the problem is.
For now, unfortunately, we are supposed to just wait and continue what we've been doing. Dr. Idries will get our messages when she returns from vacation tomorrow and, hopefully, she will conference with Dr. Grant and then call us before the appointment next week. Yesterday, following her second feeding of the day, she slept for four straight hours and then slept intermittently until she "snapped out of it" a few hours after the fast started. She's asleep right now, and has been, since her second feeding of the day. (She handled her first feeding following the fast pretty well. She sat at the table and colored with Preston and we practiced tracing some lines and circles. Once she had that next feeding, she checked out again.) The abdominal migraine cycle is over, thus the continuous, excruciating pain has subsided. John and I decided that we will back off of Gracie's feedings during the day (go back to her regular "school/therapy" schedule) and send her to school tomorrow and Friday. We made this decision based upon the fact that if we aren't feeding her around the clock, she is herself again. She deserves the chance to have a couple of good days at school and then I will resume the 'round the clock "torture" over the weekend - - all of this contingent, of course, upon whether we hear from the doctor sooner rather than later.
So, we are in holding pattern of sorts... waiting to discuss all options and risks, waiting for answers to our many questions and waiting to schedule her admission.
And, again... a huge thank you to everyone for the emails, texts, voicemails, blog comments and FB messages... we can feel all the love and support... and we are so grateful. We wish we had time right now to get back to each of you personally... we hope you understand why we haven't caught up with all of you yet!
Upon arriving at the hospital, she waited with me to check in and then took off, wheeling herself through the lobby to the elevators. Despite my best efforts to explain to her that we were there for pictures of her tummy, she was expecting therapy with Ally or Hema and was furious with me when I told her it was my turn to drive her wheelchair. She was not happy about waiting around, but then was a total trooper during the study itself. Once she understands she's not staying at the hospital, it's amazing how well she does for various procedures - - especially considering all she's already been through and what she's currently going through. She handled the barium well, just a tad over an ounce, but then was extra junky for about thirty minutes afterward.
The radiologist informed me that she definitely does not have SMA (Superior Mesenteric Artery Syndrome) - - that is good news. She did not, during the brief study, reflux any of the barium - - also good news. (She has not shown signs of reflux for the past three Upper GI studies or her last two Gastric Emptying Studies, though many doctors assume the increased secretions following feedings are reflux related. We think otherwise... it's more about her body's response to the discomfort and digestive process. She has great difficulty processing fat and protein, no matter how broken down the formula is. Dr. Grant indicated on Friday that what we describe, coupled with her surgical history, doesn't sound like reflux to him either.) The radiologist confirmed that her Nissen Fundoplication is slipped - - we have known that for years. He confirmed she has caused a Hiatal Hernia - - we have known that for years as well.
Previously, Gracie's team determined that surgery to repair the hernia was not indicated, as the hernia is not that severe. We will see what Dr. Grant and Dr. Idries think... especially since Dr. Grant discussed Gracie's Fundo with me at length on Friday. While he doesn't dismiss the idea of her abdominal migraines cycles and migraine headaches at all, one of his opinions is that Gracie's body has been reacting to the Nissen Fundoplication all these years. The intolerance to feedings and excessive, clear, stringy secretions that she produces for hours on end are common reactions he has seen in children who were, as it turned out, not good candidates for a Fundoplication. Gracie's Fundo was done at seven weeks (due to repeated vomiting and reflux which caused aspiration pneumonia), so we have no way of comparing the before and after. We do know this... the cycles are predictable and come in waves, so while the issue with the Fundo could be exacerbating the problem, we don't believe it is the only problem. And really, we still don't know what the problem is.
For now, unfortunately, we are supposed to just wait and continue what we've been doing. Dr. Idries will get our messages when she returns from vacation tomorrow and, hopefully, she will conference with Dr. Grant and then call us before the appointment next week. Yesterday, following her second feeding of the day, she slept for four straight hours and then slept intermittently until she "snapped out of it" a few hours after the fast started. She's asleep right now, and has been, since her second feeding of the day. (She handled her first feeding following the fast pretty well. She sat at the table and colored with Preston and we practiced tracing some lines and circles. Once she had that next feeding, she checked out again.) The abdominal migraine cycle is over, thus the continuous, excruciating pain has subsided. John and I decided that we will back off of Gracie's feedings during the day (go back to her regular "school/therapy" schedule) and send her to school tomorrow and Friday. We made this decision based upon the fact that if we aren't feeding her around the clock, she is herself again. She deserves the chance to have a couple of good days at school and then I will resume the 'round the clock "torture" over the weekend - - all of this contingent, of course, upon whether we hear from the doctor sooner rather than later.
So, we are in holding pattern of sorts... waiting to discuss all options and risks, waiting for answers to our many questions and waiting to schedule her admission.
And, again... a huge thank you to everyone for the emails, texts, voicemails, blog comments and FB messages... we can feel all the love and support... and we are so grateful. We wish we had time right now to get back to each of you personally... we hope you understand why we haven't caught up with all of you yet!
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