Owen's metabolic study yesterday morning revealed that he is running at 170% of what his age/weight calculations predicated - so almost double what would be typical for a kiddo his size and age. It was a perfect study - he was sleepy and laid under the ventilated hood, still the entire time while they took measurements of oxygen consumption and carbon dioxide production. The numbers are quite accurate and give us a really good idea what his RMR (resting metabolic rate) is. This number is important in the keotgenic diet since we want him to gain weight on the diet while also remaining in a state of ketosis. This number surprised even O's dietician and is obviously why we've not been able to get him to gain much weight the last three months with the formula and volumes we were using from our nutrition consults at Children's.
After a day of fasting and two days of well below normal caloric intake (as we titrate the ketocal up to the levels he needs) he is back down to fifteen pounds. I appreciated the fact that Lisa, his dietician, referred to him as a "little peanut." I like that. His genes, his high tone and propensity for movement play into this RMR number. Kelsey and I both have high metabolisms - Kelsey's is evidenced by his need for two breakfasts, a mid-morning snack, a big lunch and even bigger dinner and mine was confirmed during my pregnancy with Owen when I had to measure my glucose for two weeks. I burn through calories fast. We were happy to hear that Owen's movement - he is all of the time squirming around, waving his hands, moving his feet - is a good thing. It will help to keep his muscles strong, help his respiratory system and help overall to keep things moving through his system. We were told today that Owen is definitely not one of those children who "just lays there." That's our little guy!
We get to leave the hospital tomorrow. Ahhhhhhh. Owen is such a champ and is tolerating the new formula perfectly. Since the ketocal is so high in fat, oftentimes, especially with kids like Owen who had severe GERD (reflux) in the past, things move much more slowly through the body, are less able to be absorbed and end up "backing up." Imagine how you'd feel if you ate bacon, cheese, heavy whipping cream, eggs and butter for your meals each day. Truly, if Owen was not tube-fed, this would be our biggest challenge - getting him to eat the amounts of fats he needs to keep him in a state of ketosis. Lisa said that this is the primary reason why the diet fails in older kids - they just refuse to eat these foods in these quantities. We have heard repeatedly the last two days that, given his seizure activity, it is a blessing that Owen has the tube as it allows us to easily administer the ketocal - a perfect formulation to keep him in a state of ketosis while providing him with the nutrients and calories that he needs for continued health and growth. I never expected to hear the tube referenced in that way, but we'll run with it.
Dr. Olson has requested that, in exchange for him discharging Owen tomorrow morning, shortly after O starts the full strength ketocal, we stay in Palo Alto so that should he not tolerate this, we are close by. We happily agreed as overnights in the hospital are so rough. Nurses come in and out of the room regularly throughout the night, checking on their patients. Monitors go off. The air is recirculated and recirculated and recirculated. We will be staying at our hotel Wednesday night, perhaps celebrating with a dinner out in Palo Alto (so many great restaurants here!) and will leave for home early on Thursday morning, arriving in Indianola (oh, Indianola!) late on Friday.
O's seizures continue to decrease in frequency. I was just talking to his nurse, giving her an update on his last attempt to fall asleep for a nap. Typically it would have taken him 45 minutes to two hours to fall asleep and he would have had anywhere from 20-40 seizures. He just now fell asleep within 15 minutes and had three seizures. Cautious optimisim...
Showing posts with label tube feeding. Show all posts
Showing posts with label tube feeding. Show all posts
Tuesday, August 26, 2008
Sleepy head
It is 4:15 in the morning. I am laying on a plastic cot in Owen's hospital room which he shares with a 14 year old girl, Louiza, who just recently had a tracheotomy due to her increased inability to clear her upper respiratory pathways. Louiza also experienced a birth injury and has a wonderful, loving family, including a younger sister (by two years) who doted on her when she came to visit today. Louiza's mom, within an hour of us settling into the room, had reached out to us, told her story, written down the name of a close friend in L.A. who has a child who has successfully been treated with the ketogenic diet and offered any support she might be able to provide while we are here. This is how it is in this newest community that we belong to.
I am awake because Owen knows he is in the hospital. He has so far slept for two hours, in one hour increments. I have slept for perhaps a half an hour. This is on top of the three fairly sleepless nights we had at the outset of the trip due to Owen's newest set of teeth coming in. Kelsey is sleeping at the hotel room tonight - I get my night of luxurious, uninterrupted sleep tomorrow night. I think the last time I had more than four or five hours of sleep was before our trip to the Methow Valley in mid-May, before Owen's spasms returned.
Owen started the ketogenic diet this morning and so far, everything is going very well. His seizures are, in fact, down by about 50% as of this evening. We were very encouraged by our conversations with Dr. Olson, the nurse practitioner and dietician during our various consults with them today. There is such a good chance that this will work, either entirely eliminating O's seizures or reducing them significantly. Dr. Olson's goal is the same as ours and he sees it through with many patients - get the diet to work and then wean off the medications. We are being cautiously optimistic as there can be the "honeymoon" period even with the diet as the one that we saw with the Vigabatrin (which is the first thing Dr. Olson said we should wean off of should the diet work) where it works for a few days or a couple of weeks and then the spasms return to their previous levels. But the fact that we are seeing a response is good news indeed.
Many of you have asked about oral feeding or continued exploration of this while on the diet. The dietician raised her voice and said, "No, no, no," when we asked about this today. She reminded us that we had prioritized seizure control when we chose this diet and said that any little bit of food thrown into the mix could cause a spike in seizures (we had read this) and set Owen back. It is true - the seizures are our primary concern and are what is diminishing Owen's quality of life as well as ours. Getting him to take food orally is not a high priority and, as the dietician said, many parents struggle with this issue but are able to get their children to eat orally once they are off the diet, even after a couple of years. If we can get the seizures under control, I can live with that time frame and deal with this issue when the time comes. When you are the parent of a child like Owen, you realize... one thing at a time.
We had a wonderful visit with Mac and Margery (Grandpa Marshall and Nai Nai) and were sad to leave as we always feel so at home there. They sent us off with goodies from the Santa Rosa farmer's market which we had picked up the day before as well as plenty of other yums made with love. I don't have access to the camera right now, but will post some photos when we return home.
Our hope is that O continues to tolerate the diet and that we can begin our journey home on Wednesday afternoon. He started on 1/3 strength ketocal (formula for tube-fed keto kids) today, will go up to 2/3 strength tomorrow and full strength on Wednesday. If he does not tolerate the increased strength formula well, we may be here as late as Friday as we take the process slower. This would be such a bum deal since Laura gets into to Seattle on Friday (she planned her trip before we knew we would be having to make this trip during these dates). But we're hopeful that everything will work out fine...
Thank you for all of the emails and phone calls. And congratulations to Spencer and Elizabeth in Indianola who had a baby girl on Saturday night!! Big thanks to Kelly for calling and spreading the cheer way down here in Palo Alto. As I type this, I'm thinking of new Indianola babies, our garden, the beach and Dutch. It will be so nice to get back home.
I am awake because Owen knows he is in the hospital. He has so far slept for two hours, in one hour increments. I have slept for perhaps a half an hour. This is on top of the three fairly sleepless nights we had at the outset of the trip due to Owen's newest set of teeth coming in. Kelsey is sleeping at the hotel room tonight - I get my night of luxurious, uninterrupted sleep tomorrow night. I think the last time I had more than four or five hours of sleep was before our trip to the Methow Valley in mid-May, before Owen's spasms returned.
Owen started the ketogenic diet this morning and so far, everything is going very well. His seizures are, in fact, down by about 50% as of this evening. We were very encouraged by our conversations with Dr. Olson, the nurse practitioner and dietician during our various consults with them today. There is such a good chance that this will work, either entirely eliminating O's seizures or reducing them significantly. Dr. Olson's goal is the same as ours and he sees it through with many patients - get the diet to work and then wean off the medications. We are being cautiously optimistic as there can be the "honeymoon" period even with the diet as the one that we saw with the Vigabatrin (which is the first thing Dr. Olson said we should wean off of should the diet work) where it works for a few days or a couple of weeks and then the spasms return to their previous levels. But the fact that we are seeing a response is good news indeed.
Many of you have asked about oral feeding or continued exploration of this while on the diet. The dietician raised her voice and said, "No, no, no," when we asked about this today. She reminded us that we had prioritized seizure control when we chose this diet and said that any little bit of food thrown into the mix could cause a spike in seizures (we had read this) and set Owen back. It is true - the seizures are our primary concern and are what is diminishing Owen's quality of life as well as ours. Getting him to take food orally is not a high priority and, as the dietician said, many parents struggle with this issue but are able to get their children to eat orally once they are off the diet, even after a couple of years. If we can get the seizures under control, I can live with that time frame and deal with this issue when the time comes. When you are the parent of a child like Owen, you realize... one thing at a time.
We had a wonderful visit with Mac and Margery (Grandpa Marshall and Nai Nai) and were sad to leave as we always feel so at home there. They sent us off with goodies from the Santa Rosa farmer's market which we had picked up the day before as well as plenty of other yums made with love. I don't have access to the camera right now, but will post some photos when we return home.
Our hope is that O continues to tolerate the diet and that we can begin our journey home on Wednesday afternoon. He started on 1/3 strength ketocal (formula for tube-fed keto kids) today, will go up to 2/3 strength tomorrow and full strength on Wednesday. If he does not tolerate the increased strength formula well, we may be here as late as Friday as we take the process slower. This would be such a bum deal since Laura gets into to Seattle on Friday (she planned her trip before we knew we would be having to make this trip during these dates). But we're hopeful that everything will work out fine...
Thank you for all of the emails and phone calls. And congratulations to Spencer and Elizabeth in Indianola who had a baby girl on Saturday night!! Big thanks to Kelly for calling and spreading the cheer way down here in Palo Alto. As I type this, I'm thinking of new Indianola babies, our garden, the beach and Dutch. It will be so nice to get back home.
Monday, June 23, 2008
Our happy list...
Owen had his PEG tube replaced with a Mic-Key button today. It was a 15 minute procedure although he was anesthetized for the process as the PEG removal can sometimes be painful. What a sweet swap! The 12" long PEG tube was always getting caught on things, was unsightly, and impossible to "tuck" into his clothes. The button is great and is no more than 1/2' high and about 1' wide. We just plug the tube in and out of the button as needed. It's almost like a second, higher profile belly button. Since part of the procedure utilizes a scope, I requested that the GI doctor look for any signs of scarring in the esophagus from the prolonged, severe GERD (reflux) and for any potential ulcers in the stomach from the prednisone. The photos are gorgeous (yes, I am referring to those of my son's stomach, esophagus and entry into the intestines) - pink, smooth and perfect. Dr. Whabeh said everything looked just as it should and gave Owen a clean bill of health. A clean bill of health!!!
Oral feeding progression. Owen loves cantaloupe and watermelon. Partly, I think, because he is teething like crazy. His two bottom teeth are about to pop and we discovered last week that he loves to gnaw on cold, sweet melon. He also allowed me to give him a significant amount of water today by mouth. These are HUGE progressions for us.
Weight gain. As I've mentioned in previous recent postings, Owen's weight flat-lined for two months, from the day he got the PEG tube until about three weeks ago. He was hanging out at around 14 lbs. At today's weigh-in at Children's, with his t-shirt and pants... 16 pounds. Oh yeah. Eighteen pounds by one year of age and he'll be in the third percentile - the first time he will have been on the charts since he was about three months old. We have three weeks until Owen's first birthday.
Smiles... Oh my. The last few days, Owen smiles regularly, predictably and INTENTIONALLY. He smiles when you say hello to him, when you sweet talk to him, and when you laugh. He focuses, pauses and then the smile begins, a bit lopsided, curling up from the left side of his mouth and spreads wide across his face to his eyes and ends with a smile so big that his mouth is open wide. It is so adorable it makes me crazy-happy. Kelsey can't stop taking photos.
Keto diet. No word yet from Dr. Sotero or his nurse. Strange, given their usual responsiveness, yet we suspect that they are trying to either locate a private RD to work with or have convinced Swedish to move forward with bringing one on to help manage the diet. Our understanding - through the grapevine - is that Dr. Sotero prefers to have control over the treatments his patients receive and since he was the PI on a keto study at Children's and knows this diet well, it would also make sense that he would want to manage Owen's care himself. It has been a week since I left the second message with Patti (Sotero's nurse) and if I don't heard back by Wednesday, I will call again. But this issue feels less urgent as...
We made a mistake with the Vigabatrin. It actually works. The first two days that we gave it two Owen, we crushed the calcium-size pills, mixed them with water and administered the solution to Owen, immediately. This is when we saw the seizures decrease by about 90%. Then, after a couple of days, we changed things a bit. We would get busy prepping Owen for bed and would split the pill in half and soak it in 5mL of water while we got everything else ready, sometimes taking 10-15 minutes before giving him the solution. This is when we noticed the seizures returning - full-force. Kelsey said to me on Thursday of last week... "What if soaking the Vigabatrin makes it ineffective?" So we went back to crushing it, adding water and administering it to Owen immediately. Since Friday, Owen's seizures have tapered to one or two before he falls asleep (down from 20-40). He falls asleep so much faster, is sleeping more soundly, is smiling more, and has longer alert periods - all since Friday. I read online this last weekend that Vigabatrin becomes "chemically unstable" when left in a solution and that it must be "administered immediately" when mixed with water. We should have known this, however, it was not on any of the accompanying paperwork that you get with prescriptions. The Vigabatrin works!!!!!
Vigabatrin's effectiveness for Owen is a big, big deal - it is not like ACTH in that it will only "work" for a short period of time. Over a longer period of time, such as a year or two, it may lose its effectiveness, but for now, we can count on it to work for him. We won't know for another couple of weeks whether it will completely eliminate the seizures as it takes a few weeks at the full dose to see its potential, but it has already changed our lives dramatically. We will still proceed with the keto diet in the future, but will prioritize weight gain (which is minimal on the diet) and enjoy our happy Owen.
This is the best it has felt to post in a long time. Thank you for all of the good wishes, thoughts and crossing of fingers and toes. It helped - tremendously. We really needed these positive changes and regardless of the challenges we may face in the future, right now, today, things feel really good.
Oral feeding progression. Owen loves cantaloupe and watermelon. Partly, I think, because he is teething like crazy. His two bottom teeth are about to pop and we discovered last week that he loves to gnaw on cold, sweet melon. He also allowed me to give him a significant amount of water today by mouth. These are HUGE progressions for us.
Weight gain. As I've mentioned in previous recent postings, Owen's weight flat-lined for two months, from the day he got the PEG tube until about three weeks ago. He was hanging out at around 14 lbs. At today's weigh-in at Children's, with his t-shirt and pants... 16 pounds. Oh yeah. Eighteen pounds by one year of age and he'll be in the third percentile - the first time he will have been on the charts since he was about three months old. We have three weeks until Owen's first birthday.
Smiles... Oh my. The last few days, Owen smiles regularly, predictably and INTENTIONALLY. He smiles when you say hello to him, when you sweet talk to him, and when you laugh. He focuses, pauses and then the smile begins, a bit lopsided, curling up from the left side of his mouth and spreads wide across his face to his eyes and ends with a smile so big that his mouth is open wide. It is so adorable it makes me crazy-happy. Kelsey can't stop taking photos.
Keto diet. No word yet from Dr. Sotero or his nurse. Strange, given their usual responsiveness, yet we suspect that they are trying to either locate a private RD to work with or have convinced Swedish to move forward with bringing one on to help manage the diet. Our understanding - through the grapevine - is that Dr. Sotero prefers to have control over the treatments his patients receive and since he was the PI on a keto study at Children's and knows this diet well, it would also make sense that he would want to manage Owen's care himself. It has been a week since I left the second message with Patti (Sotero's nurse) and if I don't heard back by Wednesday, I will call again. But this issue feels less urgent as...
We made a mistake with the Vigabatrin. It actually works. The first two days that we gave it two Owen, we crushed the calcium-size pills, mixed them with water and administered the solution to Owen, immediately. This is when we saw the seizures decrease by about 90%. Then, after a couple of days, we changed things a bit. We would get busy prepping Owen for bed and would split the pill in half and soak it in 5mL of water while we got everything else ready, sometimes taking 10-15 minutes before giving him the solution. This is when we noticed the seizures returning - full-force. Kelsey said to me on Thursday of last week... "What if soaking the Vigabatrin makes it ineffective?" So we went back to crushing it, adding water and administering it to Owen immediately. Since Friday, Owen's seizures have tapered to one or two before he falls asleep (down from 20-40). He falls asleep so much faster, is sleeping more soundly, is smiling more, and has longer alert periods - all since Friday. I read online this last weekend that Vigabatrin becomes "chemically unstable" when left in a solution and that it must be "administered immediately" when mixed with water. We should have known this, however, it was not on any of the accompanying paperwork that you get with prescriptions. The Vigabatrin works!!!!!
Vigabatrin's effectiveness for Owen is a big, big deal - it is not like ACTH in that it will only "work" for a short period of time. Over a longer period of time, such as a year or two, it may lose its effectiveness, but for now, we can count on it to work for him. We won't know for another couple of weeks whether it will completely eliminate the seizures as it takes a few weeks at the full dose to see its potential, but it has already changed our lives dramatically. We will still proceed with the keto diet in the future, but will prioritize weight gain (which is minimal on the diet) and enjoy our happy Owen.
This is the best it has felt to post in a long time. Thank you for all of the good wishes, thoughts and crossing of fingers and toes. It helped - tremendously. We really needed these positive changes and regardless of the challenges we may face in the future, right now, today, things feel really good.
Sunday, May 25, 2008
Going solo.
Owen and I went to the Port Townsend farmer's market on Saturday. Kelsey had planned a ride with a friend on Bainbridge, so I decided it was a good time for me to venture out with Owen, solo.
I love Port Townsend. Their farmer's market is the best on this side of the Sound. The sun is always shining (as it always seems to be in Indianola). You can walk to get your groceries, walk to go out to eat, walk to see live music, walk to get a cup of coffee (Grounds for Change, of course), walk to the beach, walk to the many parks. Did I mention that everything is walkable? There are wide bike lanes, a public trail that meanders through town and so many wonderful green spaces. Their summer music festivals are incredible.
We parked by the farmer's market, stopped to see our friend Chris from Serendipity Farm, watched some live music, strolled around the market some more and then spent an hour and a half walking the hills of PT. It was a glorious, warm and sunny day. Owen was stylin' in his new shades and made everyone smile. He did great.
At home, in addition to our joys, we continue to have our daily struggles. Owen's weight is fluctuating - he gained a few ounces once things settled down after the tube (7+ weeks after, unfortunately), but continues to lose a bit, then gain a bit. He is now below 15 pounds again. We have incorporated rice cereal into three of his daily feedings to try to thicken things up and make them stay down. Overall, this seems to be working. I feel like we are stuck, however, in this place where he's not growing much and his stomach is not expanding to hold more food, yet we can't get enough food down him to make either of these things happen. It is so incredibly frustrating. We have been told to keep him on the pump all of the time, but he can't move things through his system efficiently enough, so it all eventually backs up anyway.
We are decidedly against any further interventions in the feeding realm. They could perform a Nissen procedure at Children's where they tighten up the esophageal sphincter (the top of the stomach) so that the contents are forced to stay down. The surgery itself is a major one and the side effects can be very serious. The GI docs could put Owen on a motility agent, to help move things through his system more efficiently. Again, the side effects are really horrible. So we will continue to do the best we can, feeding Owen from his tube, keeping him comfortable at home and keeping him out of the hospital.
The most recent development is new seizure activity. Not spasms, thankfully, but evil in their manifestation, nonetheless. For Owen, his myoclonic seizures happen right as he is falling asleep. This morning, he tried to fall asleep for an hour and half, each time he'd jerk awake just as he was going into deep sleep. He then cries and cries. Its horrible to watch as he gets so tired and desperately wants to sleep. This new seizure activity is not surprising as we've known for some time that Owen will be faced with differing types his entire life. His neurologist increased his dose of Zonegran last Monday and told us to give it two weeks to see if this helps. We're keeping our fingers crossed - again.
Despite these challenges, Owen's overall demeanor continues to improve. He's more calm, coos more, and is tolerating so many things, so much better. Our lives are easier because of these improvements and for that, we are very, very grateful.
Wednesday, April 16, 2008
Sixteen days of April.
Owen developed a second infection of his PEG site. He is on day seven of ten of amoxicillin - his second round of antibiotics. ALWAYS give your child probiotics when giving them antibiotics. It dramatically reduced Owen's severe vomiting within a day. We all need those beneficial bugs in our belly. His site looks great - better than it has since the surgery and we can tell that he finally feels better.
We, along with Owen's neurologist, decided late last week to halt the prednisone. It was making Owen crazy - really, really irritable - and we suspect that it is what has hindered healing of his tube site and perhaps aided the infection. We've had two really great days and cherish every minute of them. He's on my lap, happy as a clam, as I type this.
Owen is taking all of his nourishment by tube. He will no longer take a bottle. This is very, very frustrating and heart-breaking for me, but I must get past it and work on getting him to take solids by mouth.
Grandpa Marshall and Nai Nai came out for a brief, but busy three day visit. We put them to work prepping materials for the Green Festival. We tried to hire them, but California called them back...
Kelsey helped Herb lay flooring - as you'll see in the photos, they look like they are having WAY too much fun.
Mick, Corey and Naomi came out for a visit while Kelsey was "flooring" at Leslie and Herb's. I was finally able to meet the newest member of our extended friends-family. She's truly adorable.
Janet and I moved almost eight yards of top soil, six yards of bark, and a number of "one-man" rocks and have been weeding, digging, planting, mulching. It is satifying for me to watch things grow. Given our struggles with Owen, it seems to help create a balance. We have new terraces, new veggie beds, a corn and sunflower bed and several barrels for roma tomatoes. The tomato plants arrived late last week from Territorial Seeds and they are in the soil and "green-housed." I WILL have tomatoes this year.
The Green Festival was energizing, amazing and everything we hoped it would be. It was great to see so many of you. Leslie was a power-house in the booth both days, fielding questions about fair trade, sustainability, etc and helping to get people hooked on GFC coffee. Janet packed, hauled boxes, unloaded and helped set-up the booth - she then took care of Owen for two straight days in a hotel four blocks away. We distributed and sold several of the items that Mac and Margery worked so hard to help us prepare. Kristin Quick lent her professional trade show experience during set-up Friday, taking the day off to help. Thank you all...
PHOTOS
Wishing you a warm, sunny and fragrant spring.
S/K/O
We, along with Owen's neurologist, decided late last week to halt the prednisone. It was making Owen crazy - really, really irritable - and we suspect that it is what has hindered healing of his tube site and perhaps aided the infection. We've had two really great days and cherish every minute of them. He's on my lap, happy as a clam, as I type this.
Owen is taking all of his nourishment by tube. He will no longer take a bottle. This is very, very frustrating and heart-breaking for me, but I must get past it and work on getting him to take solids by mouth.
Grandpa Marshall and Nai Nai came out for a brief, but busy three day visit. We put them to work prepping materials for the Green Festival. We tried to hire them, but California called them back...
Kelsey helped Herb lay flooring - as you'll see in the photos, they look like they are having WAY too much fun.
Mick, Corey and Naomi came out for a visit while Kelsey was "flooring" at Leslie and Herb's. I was finally able to meet the newest member of our extended friends-family. She's truly adorable.
Janet and I moved almost eight yards of top soil, six yards of bark, and a number of "one-man" rocks and have been weeding, digging, planting, mulching. It is satifying for me to watch things grow. Given our struggles with Owen, it seems to help create a balance. We have new terraces, new veggie beds, a corn and sunflower bed and several barrels for roma tomatoes. The tomato plants arrived late last week from Territorial Seeds and they are in the soil and "green-housed." I WILL have tomatoes this year.
The Green Festival was energizing, amazing and everything we hoped it would be. It was great to see so many of you. Leslie was a power-house in the booth both days, fielding questions about fair trade, sustainability, etc and helping to get people hooked on GFC coffee. Janet packed, hauled boxes, unloaded and helped set-up the booth - she then took care of Owen for two straight days in a hotel four blocks away. We distributed and sold several of the items that Mac and Margery worked so hard to help us prepare. Kristin Quick lent her professional trade show experience during set-up Friday, taking the day off to help. Thank you all...
PHOTOS
Wishing you a warm, sunny and fragrant spring.
S/K/O
Monday, March 31, 2008
Bumpy, but smoothing out.
"They" said that the G-tube "may exacerbate reflux." They didn't say much else. Thank goodness for the Parent-to-Parent forum and all of the mothers with kiddos on feeding tubes who have answered my questions these last two weeks. These women know because they've lived it. According to these moms, it almost ALWAYS worsenes reflux - for 1-2 months while they get used to a new area of tension in their stomach. I have been dropping in on this forum so much lately... "Is this normal?" "Does your child's site looks like this?" "What does granulation tissue look like?" What in the world did parents do before web-based forums? Good lord, I would have gone crazy. As if it's not enough to try to get used the simple fact that there is a hole in your child's stomach.
Things are smoothing out now. We were able to catch the infection early and after six days of antibiotics, now have it under control. We've had to take a few steps back and do slow, drip feeds to try to increase Owen's tolerance of this new sensation in his stomach. This is normal in the world of G-tubes. He's probably lost a bit of weight the last couple of weeks, but again, all the P2P moms say this is common. We have a follow-up GI appointment tomorrow and hopefully we'll be able to discuss moving to the low-profile, mic-key button in June. I'll be glad to not have to accommodate the 6" long tube that's always present, like an added appendage, but on the opposite side of the map.
Sarah Ono knit a beautiful, wonderfully soft and silky blanket that we just received. I couldn't resist sneaking in on Owen while sleeping and immediately giving it a try.
I noticed from the photo that you really get a sense of Owen's lovely, red curls. Kelsey says that we are "not cutting Owen's hair." I'm inclined to agree. We'll keep you posted.
Things are smoothing out now. We were able to catch the infection early and after six days of antibiotics, now have it under control. We've had to take a few steps back and do slow, drip feeds to try to increase Owen's tolerance of this new sensation in his stomach. This is normal in the world of G-tubes. He's probably lost a bit of weight the last couple of weeks, but again, all the P2P moms say this is common. We have a follow-up GI appointment tomorrow and hopefully we'll be able to discuss moving to the low-profile, mic-key button in June. I'll be glad to not have to accommodate the 6" long tube that's always present, like an added appendage, but on the opposite side of the map.
Sarah Ono knit a beautiful, wonderfully soft and silky blanket that we just received. I couldn't resist sneaking in on Owen while sleeping and immediately giving it a try.
I noticed from the photo that you really get a sense of Owen's lovely, red curls. Kelsey says that we are "not cutting Owen's hair." I'm inclined to agree. We'll keep you posted.
Tuesday, March 18, 2008
Home again.
Owen continues to amaze me. He heals fast and has never been sick (knock on wood) despite being in and out of hospitals and doctor's offices his entire life. His strength and resiliency shined the last two days.
The G-tube surgery and insertion went great (Did I ever imagine that I would say that about a surgical procedure to insert a tube into my son's belly?) as did the recovery and the first 24 hours (the "critical period"). The GI surgeon, Dr. Wahbeh was amazing, compassionate, professional and experienced and is someone I would recommend without hesitation. According to the nurses I spoke with, I'm certainly not the only one who thinks he's great - he has a reputation for being one of the best in his field. Dr. Wahbeh said Owen's G-tube was the easiest he has placed in quite a while. The entire procedure lasted 15 minutes. Owen was in recovery for a mere 45 minutes.
The most difficult part was handing him off to the anesthesiologist, Dr. Orr, right after he smiled and cooed in front of both she and Dr. Wahbeh. They were totally charmed and immediately Dr. Orr said she should be the one to hold Owen since Dr. Wahbeh would be "the one to poke into him." Fortunately, Dr. Wahbeh found the humor in that remark. And off Owen went, in the arms of Dr. Orr. The second hardest part was lifting up Owen's gown once he was in his room to have the first look at the tube.
You learn how to maximize your in-patient stay at Children's and while we were there, I requested consults from Dietary, Physical Therapy and one with Robin Glass from Occupational Therapy. Robin is an amazingly talented, well-known, humble and very likable woman who we met in August during Owen's initial admission. She has researched and written extensively on infant feeding issues. We left with so much great information and good tips from Robin on helping Owen to overcome his oral aversion. He is also scheduled to see her in a few weeks in clinic for a feeding evaluation followed by a swallowing study to assess the efficacy and mechanics of his oral feeding abilities.
Kelsey surprised us with a visit Monday afternoon and took the photos that are posted. He is so busy right now, with a spot on a panel discussion tomorrow at the University of Puget Sound in Tacoma, "Making a Profit While Making a Difference," event and with numerous other projects and engagements in addition to the enormous task of running GFC. We are now more comfortable with our roles - mine as a stay-at-home mom, working on GFC projects from the home office when I can and Kelsey managing the business operations - both the day-to-day and the long term planning. We are both busy, as we like it, and life seems so much more managable now that there is a sense of routine and predictability.
The G-tube (more accurately known as a PEG tube) in the photo will be replaced in eight weeks during an outpatient visit with a much smaller "mic-key button." The larger tube and "button" (plastic piece that lays against his abdomen) are typically only used during the initial healing stages. The "mic-key" is a small, plastic piece that a feeding tube snaps into while feeding. It is extremely low-profile, comfortable and means that Owen will be able to once again enjoy "tummy-time!"
Thank you all for the emails, phone calls and text messages throughout yesterday and today. It's what gets us through these bumps in the road.
The G-tube surgery and insertion went great (Did I ever imagine that I would say that about a surgical procedure to insert a tube into my son's belly?) as did the recovery and the first 24 hours (the "critical period"). The GI surgeon, Dr. Wahbeh was amazing, compassionate, professional and experienced and is someone I would recommend without hesitation. According to the nurses I spoke with, I'm certainly not the only one who thinks he's great - he has a reputation for being one of the best in his field. Dr. Wahbeh said Owen's G-tube was the easiest he has placed in quite a while. The entire procedure lasted 15 minutes. Owen was in recovery for a mere 45 minutes.
The most difficult part was handing him off to the anesthesiologist, Dr. Orr, right after he smiled and cooed in front of both she and Dr. Wahbeh. They were totally charmed and immediately Dr. Orr said she should be the one to hold Owen since Dr. Wahbeh would be "the one to poke into him." Fortunately, Dr. Wahbeh found the humor in that remark. And off Owen went, in the arms of Dr. Orr. The second hardest part was lifting up Owen's gown once he was in his room to have the first look at the tube.
You learn how to maximize your in-patient stay at Children's and while we were there, I requested consults from Dietary, Physical Therapy and one with Robin Glass from Occupational Therapy. Robin is an amazingly talented, well-known, humble and very likable woman who we met in August during Owen's initial admission. She has researched and written extensively on infant feeding issues. We left with so much great information and good tips from Robin on helping Owen to overcome his oral aversion. He is also scheduled to see her in a few weeks in clinic for a feeding evaluation followed by a swallowing study to assess the efficacy and mechanics of his oral feeding abilities.
Kelsey surprised us with a visit Monday afternoon and took the photos that are posted. He is so busy right now, with a spot on a panel discussion tomorrow at the University of Puget Sound in Tacoma, "Making a Profit While Making a Difference," event and with numerous other projects and engagements in addition to the enormous task of running GFC. We are now more comfortable with our roles - mine as a stay-at-home mom, working on GFC projects from the home office when I can and Kelsey managing the business operations - both the day-to-day and the long term planning. We are both busy, as we like it, and life seems so much more managable now that there is a sense of routine and predictability.
The G-tube (more accurately known as a PEG tube) in the photo will be replaced in eight weeks during an outpatient visit with a much smaller "mic-key button." The larger tube and "button" (plastic piece that lays against his abdomen) are typically only used during the initial healing stages. The "mic-key" is a small, plastic piece that a feeding tube snaps into while feeding. It is extremely low-profile, comfortable and means that Owen will be able to once again enjoy "tummy-time!"
Thank you all for the emails, phone calls and text messages throughout yesterday and today. It's what gets us through these bumps in the road.
Monday, March 10, 2008
Dreaming of a fat belly.
Owen is scheduled for a 9 am surgery on the 17th at Children's for a G-tube placement. It will be a two day in-patient stay. Good thing he's not Irish or this would put a serious damper on his St. Patty's Day festivities.
The G-tube is a good thing - even though I was opposed to it even as recent as a few days ago. I just hate to see another intervention, this time a surgical one, and one that requires a stay at the hospital. But Owen is rapidly gaining weight with the use of a tube, is making all sorts of fun noises and is experimenting with smiling all of the time now. He seems so changed. I think it's a combination of coming off the ACTH, having more food and less (no) vomiting. The NG tube irritates his face, is a short-term solution and has created an oral aversion. The G-tube is inconspicuous, does not muck up our efforts to get Owen to eat solid foods and is low maintenance. I know it goes without saying that each decision we make is with Owen's quality of life in mind and given this, and the arguments we recently heard in favor of the G-tube from Dr. McLaughlin (the neurodevelopmental pediatrician at Children's) and the dietician who has been following Owen, it is the right decision. Owen's pediatrician has been encouraging the use of a G-tube since October.
Owen made the rounds last night at an Indianola gathering at Kelly and Dave's (for Corina and Lucy's birthdays) and was so content to be held by a few admirers - all whom were so good with him. It was so liberating to be out and to be with a large group of people who didn't stare at the oddity of the tube or the fact that Owen is different, but rather who smiled, touched him, held him, talked to him. And most of the Indianola kids know him - it warms our heart when they come up and say "Hi Owen!" At one point, I had to search the crowd for Owen - he was with Sarah - she was showing him the light and shadows through the leaves of a very large, loyely tree in the yard. Later in the evening he was smiling and smiling and smiling for Elizabeth. It was such a positive experience for all of us. It is so good to have community in Indianola.
We caught Owen on tape experimenting with smiling again and have promised many of you the video. Please excuse our unabashed giddiness... We are parents who long - and have waited long - for our baby's smiles.
Thanks for thinking of Owen on the 17th. May his belly grow ever larger.
The G-tube is a good thing - even though I was opposed to it even as recent as a few days ago. I just hate to see another intervention, this time a surgical one, and one that requires a stay at the hospital. But Owen is rapidly gaining weight with the use of a tube, is making all sorts of fun noises and is experimenting with smiling all of the time now. He seems so changed. I think it's a combination of coming off the ACTH, having more food and less (no) vomiting. The NG tube irritates his face, is a short-term solution and has created an oral aversion. The G-tube is inconspicuous, does not muck up our efforts to get Owen to eat solid foods and is low maintenance. I know it goes without saying that each decision we make is with Owen's quality of life in mind and given this, and the arguments we recently heard in favor of the G-tube from Dr. McLaughlin (the neurodevelopmental pediatrician at Children's) and the dietician who has been following Owen, it is the right decision. Owen's pediatrician has been encouraging the use of a G-tube since October.
Owen made the rounds last night at an Indianola gathering at Kelly and Dave's (for Corina and Lucy's birthdays) and was so content to be held by a few admirers - all whom were so good with him. It was so liberating to be out and to be with a large group of people who didn't stare at the oddity of the tube or the fact that Owen is different, but rather who smiled, touched him, held him, talked to him. And most of the Indianola kids know him - it warms our heart when they come up and say "Hi Owen!" At one point, I had to search the crowd for Owen - he was with Sarah - she was showing him the light and shadows through the leaves of a very large, loyely tree in the yard. Later in the evening he was smiling and smiling and smiling for Elizabeth. It was such a positive experience for all of us. It is so good to have community in Indianola.
We caught Owen on tape experimenting with smiling again and have promised many of you the video. Please excuse our unabashed giddiness... We are parents who long - and have waited long - for our baby's smiles.
Thanks for thinking of Owen on the 17th. May his belly grow ever larger.
Saturday, March 8, 2008
"Hope is not blind optimism."
Says Barack Obama...
We had a great visit this week with Dr. MacLaughlin, a neurodevelopmental pediatrician at Children's Hospital. He said based on Owen's MRI, which had not been so carefully and compassionately reviewed with us, image by image, until this visit, that he "expects Owen's vision will improve." He also said that children like Owen require even more calories than "normal" babies as they are not only trying to grow, but trying to heal, to recover from an injury. He has over 35 years of experience in his field and said he's seen so many parents struggle with "the tube decision." He encouraged us to have hope - for many things.
We have decided to move forward with a G-tube (tube inserted directly into the stomach), which will be placed sometime in late March. The NG tube is a temporary solution, and is working great, but has its disadvantages. With a G-tube, Owen will hopefully take better to solid foods and will have less discomfort than that associated with the NG tube. He is fattening up and the tube has almost entirely eliminated the vomiting. He is even more adorable with healthy amounts of sweet, sweet baby fat.
We have been very sleep deprived the last three weeks... So many of you have emailed asking about Owen - I'm sorry to have dropped off the blog-o-sphere. We appreciate all of you making the effort to stay connected. After a slow process of elimination, we determined that Owen was awake and very agitated (screaming) almost every hour during the night these long three weeks due to the Zonegran that he was taking for seizure control. We now give this to him in the morning, instead of right before bed as had been prescribed. We are all now sleeping soundly.
Owen has resumed experimenting with smiling and does this repeatedly each day. It makes our heart melt each and every time. He is now also cooing and making noises, especially during the night. It makes Kelsey and I laugh with joy, even at 3:00 am. He is in his last week of the ACTH injections.
Life seems to be somewhat normal for us - something that was hard to imagine even just a couple of months ago. There are no crises. No emergencies. No seizures. We all know and understand each other and there is no longer any guessing as to what might make Owen happy or content. He enjoys the sounds of the garden and the warmth of the sunshine. And Kelsey and I enjoy cooking in the evenings - really cooking - wonderful dinners each night. We are getting out into the garden (our kale, lettuce and radishes are up), are doing some additional landscaping in our yard - moving soil, digging in one-man rocks, terracing new vegetable beds. Our garden this year will include a melon patch, a sweet corn and sunflower bed and a section of garden with trellises for sugar peas, pole beans and cucumbers. We are making plans for travel this summer and are feeling overall more settled. Owen and I spend many of our early mornings, laying in bed, snuggled up together with me appreciating the last vestiges of his babyhood, knowing that these will soon be memories, as are, already, so many of the experiences we've had with him.
The photo below was taken on a recent walk to the beach to observe the lunar ecplise. Ahhh, the beauty and the wonder.
We had a great visit this week with Dr. MacLaughlin, a neurodevelopmental pediatrician at Children's Hospital. He said based on Owen's MRI, which had not been so carefully and compassionately reviewed with us, image by image, until this visit, that he "expects Owen's vision will improve." He also said that children like Owen require even more calories than "normal" babies as they are not only trying to grow, but trying to heal, to recover from an injury. He has over 35 years of experience in his field and said he's seen so many parents struggle with "the tube decision." He encouraged us to have hope - for many things.
We have decided to move forward with a G-tube (tube inserted directly into the stomach), which will be placed sometime in late March. The NG tube is a temporary solution, and is working great, but has its disadvantages. With a G-tube, Owen will hopefully take better to solid foods and will have less discomfort than that associated with the NG tube. He is fattening up and the tube has almost entirely eliminated the vomiting. He is even more adorable with healthy amounts of sweet, sweet baby fat.
We have been very sleep deprived the last three weeks... So many of you have emailed asking about Owen - I'm sorry to have dropped off the blog-o-sphere. We appreciate all of you making the effort to stay connected. After a slow process of elimination, we determined that Owen was awake and very agitated (screaming) almost every hour during the night these long three weeks due to the Zonegran that he was taking for seizure control. We now give this to him in the morning, instead of right before bed as had been prescribed. We are all now sleeping soundly.
Owen has resumed experimenting with smiling and does this repeatedly each day. It makes our heart melt each and every time. He is now also cooing and making noises, especially during the night. It makes Kelsey and I laugh with joy, even at 3:00 am. He is in his last week of the ACTH injections.
Life seems to be somewhat normal for us - something that was hard to imagine even just a couple of months ago. There are no crises. No emergencies. No seizures. We all know and understand each other and there is no longer any guessing as to what might make Owen happy or content. He enjoys the sounds of the garden and the warmth of the sunshine. And Kelsey and I enjoy cooking in the evenings - really cooking - wonderful dinners each night. We are getting out into the garden (our kale, lettuce and radishes are up), are doing some additional landscaping in our yard - moving soil, digging in one-man rocks, terracing new vegetable beds. Our garden this year will include a melon patch, a sweet corn and sunflower bed and a section of garden with trellises for sugar peas, pole beans and cucumbers. We are making plans for travel this summer and are feeling overall more settled. Owen and I spend many of our early mornings, laying in bed, snuggled up together with me appreciating the last vestiges of his babyhood, knowing that these will soon be memories, as are, already, so many of the experiences we've had with him.
The photo below was taken on a recent walk to the beach to observe the lunar ecplise. Ahhh, the beauty and the wonder.
Monday, February 11, 2008
Tubes and smiles.
We finally made the difficult decision last week to begin using a feeding tube for Owen. The NG (naso-gastric) tube slips through one nostril and ends up in the stomach where it deposits the much needed calories. It is not a permanently placed tube and we have been trained on both removing and replacing it. It is pretty benign and seems to be working exceptionally well for Owen.
We have tried so hard to get Owen the level of nutrition he needs, but always fall just a few ounces short most days. Our pediatrician, Dr. W., connected us with a wonderful woman on Bainbridge Island whose son developed a serious heart condition at birth. At seven and a half months, he just graduated from the tube. From what I understand, his survival is also a miracle. His mother had extra supplies and wanted to provide training and support to another set of parents in need. It was such a generous act of goodwill for Dr. Walters to arrange this and introduce two sets of parents going through similar struggles. I cannot say enough great things about the level of care Owen has received from Dr. Walters and the staff at Bainbridge Pediatrics.
Owen now gets slow "drip" feeds through the tube during the night and during the day, is fed mostly from his bottle. We were told that it was probably the case that Owen had developed a major aversion to bottle feeding as he knew that only led to vomiting and that when not forced to take more than a couple of ounces at a time, something he can comfortably handle, he would again readily take the bottle. This has happened and we are keeping our fingers crossed that this continues.
Owen now sleeps more soundly, is getting the food he needs and the quiet naps he needs, is not constantly plagued by the fear of losing his food and we have substantially more flexibility in our lives, not having to hold Owen upright for hours a day after feedings.
The even better news, in my humble mommy opinion, is that we are getting more and more smiles and some that seem to be purposeful - an expression based on positive feedback. Owen began experimenting with smiling a number of weeks ago. We've been told by our various support folks that this is a built-in expression in infants and that for most babies, it is reinforced by the visual queue of parents smiling back. In Owen's case, we cheer and laugh and squeal with enthusiasm. Sunday morning, he was smiling and smiling and smiling for Kelsey and I as we cheered him on. The same thing happened this afternoon for Grandma Janet and I...
Owen will be seven months old on Wednesday. It so good to finally see a smile on his face.
We have tried so hard to get Owen the level of nutrition he needs, but always fall just a few ounces short most days. Our pediatrician, Dr. W., connected us with a wonderful woman on Bainbridge Island whose son developed a serious heart condition at birth. At seven and a half months, he just graduated from the tube. From what I understand, his survival is also a miracle. His mother had extra supplies and wanted to provide training and support to another set of parents in need. It was such a generous act of goodwill for Dr. Walters to arrange this and introduce two sets of parents going through similar struggles. I cannot say enough great things about the level of care Owen has received from Dr. Walters and the staff at Bainbridge Pediatrics.
Owen now gets slow "drip" feeds through the tube during the night and during the day, is fed mostly from his bottle. We were told that it was probably the case that Owen had developed a major aversion to bottle feeding as he knew that only led to vomiting and that when not forced to take more than a couple of ounces at a time, something he can comfortably handle, he would again readily take the bottle. This has happened and we are keeping our fingers crossed that this continues.
Owen now sleeps more soundly, is getting the food he needs and the quiet naps he needs, is not constantly plagued by the fear of losing his food and we have substantially more flexibility in our lives, not having to hold Owen upright for hours a day after feedings.
The even better news, in my humble mommy opinion, is that we are getting more and more smiles and some that seem to be purposeful - an expression based on positive feedback. Owen began experimenting with smiling a number of weeks ago. We've been told by our various support folks that this is a built-in expression in infants and that for most babies, it is reinforced by the visual queue of parents smiling back. In Owen's case, we cheer and laugh and squeal with enthusiasm. Sunday morning, he was smiling and smiling and smiling for Kelsey and I as we cheered him on. The same thing happened this afternoon for Grandma Janet and I...
Owen will be seven months old on Wednesday. It so good to finally see a smile on his face.
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