4th Birthday Photo Session
Friday, March 25, 2011
The Dam Finger (Dam, not damn!)
The "finger in the dam" is currently holding. Lifting up the button is the only thing holding back the leak. However, it's a thin line we have to walk if we go this route, because you pull it too tight and it can cause wounds on the inside of the stomach, the abdomen wall, suffocate the tissue, damage the innards... **sarcasm hat** 'oh you know, ...just a few risks!' So far, it's working and there's a little bit of room left so it's not too tight.
They've determined that Andi was leaking 25-30% of her feeds. Yep, 25-30%. That is why she hasn't been gaining weight, as it was pouring out of her. 25-30% ... yeah, that's a lot! The thing that is troubling us is that, we've been telling them about this leak for the past eight months. Eight months it has been in, eight months it has leaked. I've been to numerous appointments about the leak too... even seeing the actual surgeon in clinic twice. Eight months. 25-30%... I can't even imagine how much bigger and stronger, and possibly further along she'd be if we would've fixed this debacle eight months ago. Maybe she'd be strong enough to sit up by now. This hasn't just cost us a lot of money, appointments, time and ridiculous amounts of concoctions trying to protect the skin around the g-tube from breaking down... this might have robbed Andi of being more on par with where a nearly 10 month old Bean should be. Frustrated isn't a strong enough word.
I counted the number of times we've changed the g-tube button in attempt to resolve the leak. Nine times. Nine times she's had her button removed and we've tried another one. Nine. When they did the surgery, she comes out of surgery with a certain type of doohickey. I have no idea what it's called, but it's a heavy three prong tube that never came off. They leave this 3-port doohickey on for at least 6 weeks while the area seals & heals. After it's determined okay, they switch to the Mic-Key. That's the button that has a cord that fits like a key, locks onto the button and enables to food to be fed directly into her stomach. Our 3-port doohickey leaked. Our first button leaked. They changed that 12Fr, 1.0 cm button to a 14 Fr, 1.0 cm button. That was in August of last year. August. It leaked then. We went through a UTI, aspirated pneumonia, diuretic balancing, two consecutive months living here, and then the heart surgery... all while, the dang thing leaked. We told them it leaked. The nurses used a gazillion split 2x2's. The thing leaked. After the heart surgery... it leaked. With the skin being wet all the time, the skin broke down around the g-tube, and in the course of trying to fix that and the leak... we changed buttons again. Went to a 14 Fr., 1.2 cm, went back to a 12 Fr, 1.2 cm., now I think she has a 14 Fr, 1.2 cm in again... Nine times it's been changed.
[I plan on emailing you Victoria, but haven't taken a moment just yet, but - they told me that a 16 FR would be way too big for her. If this doesn't work, they want to do an NG or NJ, and we've said no...because she will pull it. The NJ requires x-rays to confirm placement, so that's really not a viable option. But ENT scoped her nose and reminded us of the more open side, in case they do have to do the NG.]
In any case, our game plan is currently feed her all her food with the dam plugged, that additional 25-30% volume should really start to pack the weight on. In addition to that, we're working hard on oral feeds and I'm sending down the most caloric baby purees they make, or mixing in some rice cereal to the fruits. Our plan is to do this and see how today goes. So far, this seems to be working. Andi is snoring now. But we're keeping track of all the calories we give her...and we'll see if this dam is worth a damn.
Once her weight is up and on the right track, we will start g-tube weening and pushing the orals until we can retire the g-tube altogether.
They've determined that Andi was leaking 25-30% of her feeds. Yep, 25-30%. That is why she hasn't been gaining weight, as it was pouring out of her. 25-30% ... yeah, that's a lot! The thing that is troubling us is that, we've been telling them about this leak for the past eight months. Eight months it has been in, eight months it has leaked. I've been to numerous appointments about the leak too... even seeing the actual surgeon in clinic twice. Eight months. 25-30%... I can't even imagine how much bigger and stronger, and possibly further along she'd be if we would've fixed this debacle eight months ago. Maybe she'd be strong enough to sit up by now. This hasn't just cost us a lot of money, appointments, time and ridiculous amounts of concoctions trying to protect the skin around the g-tube from breaking down... this might have robbed Andi of being more on par with where a nearly 10 month old Bean should be. Frustrated isn't a strong enough word.
I counted the number of times we've changed the g-tube button in attempt to resolve the leak. Nine times. Nine times she's had her button removed and we've tried another one. Nine. When they did the surgery, she comes out of surgery with a certain type of doohickey. I have no idea what it's called, but it's a heavy three prong tube that never came off. They leave this 3-port doohickey on for at least 6 weeks while the area seals & heals. After it's determined okay, they switch to the Mic-Key. That's the button that has a cord that fits like a key, locks onto the button and enables to food to be fed directly into her stomach. Our 3-port doohickey leaked. Our first button leaked. They changed that 12Fr, 1.0 cm button to a 14 Fr, 1.0 cm button. That was in August of last year. August. It leaked then. We went through a UTI, aspirated pneumonia, diuretic balancing, two consecutive months living here, and then the heart surgery... all while, the dang thing leaked. We told them it leaked. The nurses used a gazillion split 2x2's. The thing leaked. After the heart surgery... it leaked. With the skin being wet all the time, the skin broke down around the g-tube, and in the course of trying to fix that and the leak... we changed buttons again. Went to a 14 Fr., 1.2 cm, went back to a 12 Fr, 1.2 cm., now I think she has a 14 Fr, 1.2 cm in again... Nine times it's been changed.
[I plan on emailing you Victoria, but haven't taken a moment just yet, but - they told me that a 16 FR would be way too big for her. If this doesn't work, they want to do an NG or NJ, and we've said no...because she will pull it. The NJ requires x-rays to confirm placement, so that's really not a viable option. But ENT scoped her nose and reminded us of the more open side, in case they do have to do the NG.]
In any case, our game plan is currently feed her all her food with the dam plugged, that additional 25-30% volume should really start to pack the weight on. In addition to that, we're working hard on oral feeds and I'm sending down the most caloric baby purees they make, or mixing in some rice cereal to the fruits. Our plan is to do this and see how today goes. So far, this seems to be working. Andi is snoring now. But we're keeping track of all the calories we give her...and we'll see if this dam is worth a damn.
Once her weight is up and on the right track, we will start g-tube weening and pushing the orals until we can retire the g-tube altogether.
Thursday, March 24, 2011
Telling It Like It Is...
Let's be honest and frank, and seriously cut to the chase... Dr's don't know sh*t about sh*t. It's deductive reasoning, and narrowing down the options. Love you dearly, but $1500. to ascertain that Andi's g-tube leaks abnormal amounts. Really? I'd much rather gone to Hawaii with that credit and enjoyed life.
Review:
gastric emptying test = normal, although noticed leak
upper G.I. = normal, although noticed leak
ultrasound = normal, all seems to be functioning
Her electrolytes are off slightly, as is her urine output... which suggests, slight dehydration. Yesterday we countered with some pedialyte via a 2-hour bolus. Today, we counter with additional formula. As the hydration value between the two is about the same, although the formula offers more calories, and we're all about calories. To quote Dolly Parton in Steel Magnolias, "calories, calories!"
The g-tube surgeon came in and evaluated the leak. I showed him the pouch collecting a nice volume, and he agreed, 'that just isn't right.' ("Really?") During a feed, he pulled up on the button like you pull up a stopper in a bathroom sink. It stopped the leak. He released the button, and the leak continued to ooze out from around the g-tube. His suggestion was to mimic his pulling the button upright, and we do that with gauze or rather, split 2x2's.
We're in a wait and see overnight mode to see if this solution works. Will she be dry? We've also increased her feed volume, to shovel more food in her and hopefully counter the dehydration. We're doing labs tomorrow...ewh. I've asked either our night nurse do it, or Panda. I also suggested calling over to the NICU, as they are the masters and once told me that if we ever need help... to call them for tough blood draws.
The options on the table if this doesn't work aren't appealing. So unappealing that I won't even type them out. The only appealing thing is pulling the tube and letting it close up, the only problem with that is insuring she gets enough calories to get her weight up. The question is, what method will we use to do that... and again, the options aren't all that great.
Tomorrow will tell a lot. Hopefully we can come up with a game plan. But as it appears now, we've just spent $1500. to determine that her button needs several more layers of friggen gauze shoved up underneath it, to prevent it from leaking like it shouldn't. It's late and we're beyond tired, beyond frustrated, so let's just hope we can fix this major non-physical failure and get back onto the weight charts. Hopefully they'll come to us and tell it like it is, and offer real solutions... because honestly, we've had our fill, and then some.
Review:
gastric emptying test = normal, although noticed leak
upper G.I. = normal, although noticed leak
ultrasound = normal, all seems to be functioning
Her electrolytes are off slightly, as is her urine output... which suggests, slight dehydration. Yesterday we countered with some pedialyte via a 2-hour bolus. Today, we counter with additional formula. As the hydration value between the two is about the same, although the formula offers more calories, and we're all about calories. To quote Dolly Parton in Steel Magnolias, "calories, calories!"
The g-tube surgeon came in and evaluated the leak. I showed him the pouch collecting a nice volume, and he agreed, 'that just isn't right.' ("Really?") During a feed, he pulled up on the button like you pull up a stopper in a bathroom sink. It stopped the leak. He released the button, and the leak continued to ooze out from around the g-tube. His suggestion was to mimic his pulling the button upright, and we do that with gauze or rather, split 2x2's.
We're in a wait and see overnight mode to see if this solution works. Will she be dry? We've also increased her feed volume, to shovel more food in her and hopefully counter the dehydration. We're doing labs tomorrow...ewh. I've asked either our night nurse do it, or Panda. I also suggested calling over to the NICU, as they are the masters and once told me that if we ever need help... to call them for tough blood draws.
The options on the table if this doesn't work aren't appealing. So unappealing that I won't even type them out. The only appealing thing is pulling the tube and letting it close up, the only problem with that is insuring she gets enough calories to get her weight up. The question is, what method will we use to do that... and again, the options aren't all that great.
Tomorrow will tell a lot. Hopefully we can come up with a game plan. But as it appears now, we've just spent $1500. to determine that her button needs several more layers of friggen gauze shoved up underneath it, to prevent it from leaking like it shouldn't. It's late and we're beyond tired, beyond frustrated, so let's just hope we can fix this major non-physical failure and get back onto the weight charts. Hopefully they'll come to us and tell it like it is, and offer real solutions... because honestly, we've had our fill, and then some.
Wednesday, March 23, 2011
An IV Drip O' Starbucks
I completely forgot how incredibly difficult it is to sleep in a hospital. It's ridiculous, actually. The one place you need rest, and it's probably the hardest place to find it. As I laid down to sleep on our first night, I thought perhaps a helicopter was landing on the building next door, as the room seemed to vibrate and hum. After stirring a bit, I realized that 10 p.m. in the children's hospital was a great time to use the big machine in the hallway to wash & buff the floors. Then, it's getting used to listening to the feed pump rotate a half of a circle to give her stomach a tiny splash of milk every 30 seconds. Once I got through those initial noises, it was 'nigh-nigh' city for maybe an hour. Then, the feeding machine alarm goes off, out of milk. Meanwhile, Andi's having a ball kicking her legs and riverdancing, with what I perceived as excitement about the new environment and people to see. At 3 a.m., again - this is on our first night here, Andi's pulsesox alarm goes off. I get up to check on her, and she's playing with her cords... wide awake. I check her g-tube pouch, because the collection overnight had been growing quiet substantial. I was actually thrilled at the evidence, and was looking forward to seeing the volume collected. So, I check the bag, and it's nearly empty. Yep. Empty. The bag leaked and the whole contents are now all over her, her outfit and her bedding... just like home! Yea! I guess the only up-side of this disappointment was I didn't have to do ALL the laundry! Yippie. So, the nurse and I changed her, her bedding, and got the Bean simmered back down. At 5, we repouched her g-tube, trying to fix the leak to capture the leak. By 6, I heard someone come in, but I didn't even acknowledge them. I found out later it was her pediatrician stopping by to see her. Before he goes to work several miles away, he likes to check on his kids in the hospital. How many people do you know that committed to their work? Their patients? I can tell you that I know of only a handful of people that dedicated! By 7 a.m., it was the 3rd year med. student trying to get my input as to what all is going on, and how she did overnight, etc. As that med student is responsible for giving the report during rounds. At this point, I was begging for a Starbuck's. Smartly enough, there is one on the main floor of this building. Probably the best placed location ever, and probably one of the more profitable, as it is constantly busy. When I returned from Starbucks with my coffee & fatty yogurt parfait (have you seen the calorie count on one of those?) I sashay back onto the floor and promptly see my favoritest nurse coming down the hallway?! "what are you doing here?" "are you here to visit?" Had I been more alert and feeling sarcastic, I could have fed her a great story of complete b.s. Instead, we caught up and she came to see the Bean. Another one amazed at her growth & development. I forgot to mention that Andi is awake during most of the night too, and we both have had very little rest.
The day was a lot of activity and a lot of nothing. We had more blood tests and a urine sample. Then we had an echo cardiogram. We're scheduled to do a sedated echo mid-April, to get in and measure the pressure on the right side of her heart - which is where she had the pulmonary hypertension post heart surgery. We're hoping that test will yield answers to if she can finally get off the Viagra! Yes, our Bean is still on Viagra... (Sildenifil)... In any case, they wanted to do the "Echo" to see if her heart was contributing to the lack of weight gain, as it definitely played a role pre-heart surgery. In addition to that, we finally had a gastric emptying test, AND, we had an actual Pediatric GI Dr. come to visit us! Now, that's a lot of activity and tests to have in one day. As outpatients, we would've had multiple appointments, days, and trips to get all that done. Pretty much makes the $300. a night co-pay worthwhile, as that saves us a lot of time and work getting tests and results. Lastly, we spoke with dietary again and she recalculated the numbers on our formula recipe. Turns out I wasn't making Andi's 27 calorie Neocrap strong enough, and it was coming out to around 25 calorie. So, that's a small contributor or explanation of why she lost a few ounces these past two weeks. As for the g-tube pouch... we only got a partial amount bagged and measured. It continued to leak out all day, but, the partial was enough of a collection to get a few heads shake -- as in, 'that's just not right.'
So... the verdict thus far. The 'echo' "looked good." Meaning, they don't have reason to believe that her heart is a contributing factor to the lack of weight gain. Her gastric emptying tests initial results showed that her stomach was moving the food fairly normally. However, the nuclear physicist (yes, nuclear... the test puts a nuclear substance they can trace into her formula...so she's glowing from within!) wants to review the data more thoroughly, as she didn't see a problem with the stomach emptying, but she definitely saw the leak out the g-tube. She isn't here today, so we won't know her final review until Thursday. We saw the G-Tube nurse/specialist and she blew up the balloon inside Andi's stomach from 3 ml to 5 ml. She was thinking that maybe that was the cause of the leak....the balloon wasn't filled - so it didn't pull the stomach to the abdomen wall tight enough. She's supposed to check back in today to see how it's changed. I've told her that we've tried everything from 3 - 5 ml., different sized buttons, different lengths... and we still leak. Again, she confirmed, g-tubes leak... but they shouldn't leak that much.
Throughout the afternoon, Andi's eyes grew darker, heavier, and despite trying my whole bag of tricks to get her to sleep, nothing worked. New environment of many people, lots of people picking at her, and none of it allowed sleep. By 6 p.m., Andi and I were dragging... but, our good friends came by to see her, and her Daddy arrived - so after begging Andi to sleep while we were gone, we left her for a spell and the four of us went to a super yummy dinner. When we returned to the floor, we were asked at the locked door (you have to be buzzed in) what we wanted (visiting hours were over) and I rather casually said, 'uhm, we live here.' We get buzzed in and there's our nurse holding a very fussy Bean in her pink tutu, up at the nurses station. Apparently, Bean didn't want to be put down, and she wasn't too keen on sleeping either. With Mommy & Daddy flocking her bed, the Bean was all smiles and riverdancing again, dark circles under her super sleepy eyes. I asked the Attending Ped. earlier that day if she could have something to help her sleep. We agreed she could have some Tylenol... so, by 10 p.m., she got some of that - and by 10:30, I think both the Bean and I were snoring. The next thing I know, it's 4 a.m., and Andi's getting a urine bag placed, and just a little whiny. I'm warned that the vampires are coming at 5 to get more blood for labs. I roll my eyes and shudder at the thought. We go back to sleep. Minutes later, the building fire alarm goes off. Lights in the hallway flashing, the siren buzzing. I say out loud, 'you've got to be kidding me!?!' and then start to imagine how the hell to get off the penthouse floor if there really was a problem. I start reliving the movie, The Towering Inferno, and roll over again. An announcement I can't hear except for two words you don't want to hear in the hospital, 'code red', signals the end of the problem. The siren stops, the lights flash for another 15 seconds, and then it's done. I remember feeling thankful that I didn't have to claw my way down the stairs with Bean on my arm, fleeing the inferno. A few minutes later (no joke!), the lights and siren start up again, but only go off for a half of a minute. Silence. I roll over and start to drool. For maybe two minutes, then... the vampires arrive. I roll off my bed, which is really a bench with a pad on it... and, notice it's 5:05 a.m. "Ah, Starbuck's is open!!!" So, I put on my slippers and stroll down to Starbuck's in my Blazer's PJ's and sweatshirt. A vision, I'm sure. Miss Perky behind the counter greets me and asks how my morning is... 'ooh, g-oo-d.... just enjoying the fire alarm wake-up call'... she laughs. I laugh at myself. When I'm asked at the door to be buzzed in, I just reply, "I'm just trying to get back in!" When I'm buzzed in I take two steps and then I hear the familiar cries of my Bean in agony. Vampires suck!!! The lady blew her two chances to get the blood work, so they called "Panda." Panda is a group that's usually in-house that specialize in getting blood out of the difficult people. Panda arrives... more horrific crying, sad and tired eyes glaring at us all as if to ask, "why the hell are you punishing me!!!" The Panda lady uses a light to find good veins, warms up the selected hand, and then gets some out, but then has to pull the needle. She gets the blood to drip out and scoops it up with the vile. Good times. Nothing like seeing and hearing your baby shriek in horror first thing in the morning. So, in my disgust I told Andi in front of the blood sucking lady... "tomorrow, we'll just tell them they can take their labs and shove 'em!" Seemingly semi-offended, she asked our night nurse why they need the labs again. We're not sure, but it sounds like her potassium is low. More questions for me to find out about today. However, at 4ish our nurse pulled the g-tube pouch up over the mic-key, and the bag started to collect. By 5:30ish, she emptied the contents and found she'd leaked 45ml. Granted, between that time, the Bean was under extreme duress with vampire #1 failing to get her blood, twice. After the Panda lady, our nurse drew another collection and I didn't get the measurement, but again - a nice volume was collected, although under duress.
In any case, I swaddled the Bean in her cozy blanket and she's been sleeping soundly ever since. I'm now on my second large coffee from Starbuck's. Last time we lived here, I suggested that Starbuck's delivers to our room, but now, I think parents in need should just get an IV drip o' Starbuck's. And just for the record, I think Kobo's coffee is 100 times better.
The day was a lot of activity and a lot of nothing. We had more blood tests and a urine sample. Then we had an echo cardiogram. We're scheduled to do a sedated echo mid-April, to get in and measure the pressure on the right side of her heart - which is where she had the pulmonary hypertension post heart surgery. We're hoping that test will yield answers to if she can finally get off the Viagra! Yes, our Bean is still on Viagra... (Sildenifil)... In any case, they wanted to do the "Echo" to see if her heart was contributing to the lack of weight gain, as it definitely played a role pre-heart surgery. In addition to that, we finally had a gastric emptying test, AND, we had an actual Pediatric GI Dr. come to visit us! Now, that's a lot of activity and tests to have in one day. As outpatients, we would've had multiple appointments, days, and trips to get all that done. Pretty much makes the $300. a night co-pay worthwhile, as that saves us a lot of time and work getting tests and results. Lastly, we spoke with dietary again and she recalculated the numbers on our formula recipe. Turns out I wasn't making Andi's 27 calorie Neocrap strong enough, and it was coming out to around 25 calorie. So, that's a small contributor or explanation of why she lost a few ounces these past two weeks. As for the g-tube pouch... we only got a partial amount bagged and measured. It continued to leak out all day, but, the partial was enough of a collection to get a few heads shake -- as in, 'that's just not right.'
So... the verdict thus far. The 'echo' "looked good." Meaning, they don't have reason to believe that her heart is a contributing factor to the lack of weight gain. Her gastric emptying tests initial results showed that her stomach was moving the food fairly normally. However, the nuclear physicist (yes, nuclear... the test puts a nuclear substance they can trace into her formula...so she's glowing from within!) wants to review the data more thoroughly, as she didn't see a problem with the stomach emptying, but she definitely saw the leak out the g-tube. She isn't here today, so we won't know her final review until Thursday. We saw the G-Tube nurse/specialist and she blew up the balloon inside Andi's stomach from 3 ml to 5 ml. She was thinking that maybe that was the cause of the leak....the balloon wasn't filled - so it didn't pull the stomach to the abdomen wall tight enough. She's supposed to check back in today to see how it's changed. I've told her that we've tried everything from 3 - 5 ml., different sized buttons, different lengths... and we still leak. Again, she confirmed, g-tubes leak... but they shouldn't leak that much.
Throughout the afternoon, Andi's eyes grew darker, heavier, and despite trying my whole bag of tricks to get her to sleep, nothing worked. New environment of many people, lots of people picking at her, and none of it allowed sleep. By 6 p.m., Andi and I were dragging... but, our good friends came by to see her, and her Daddy arrived - so after begging Andi to sleep while we were gone, we left her for a spell and the four of us went to a super yummy dinner. When we returned to the floor, we were asked at the locked door (you have to be buzzed in) what we wanted (visiting hours were over) and I rather casually said, 'uhm, we live here.' We get buzzed in and there's our nurse holding a very fussy Bean in her pink tutu, up at the nurses station. Apparently, Bean didn't want to be put down, and she wasn't too keen on sleeping either. With Mommy & Daddy flocking her bed, the Bean was all smiles and riverdancing again, dark circles under her super sleepy eyes. I asked the Attending Ped. earlier that day if she could have something to help her sleep. We agreed she could have some Tylenol... so, by 10 p.m., she got some of that - and by 10:30, I think both the Bean and I were snoring. The next thing I know, it's 4 a.m., and Andi's getting a urine bag placed, and just a little whiny. I'm warned that the vampires are coming at 5 to get more blood for labs. I roll my eyes and shudder at the thought. We go back to sleep. Minutes later, the building fire alarm goes off. Lights in the hallway flashing, the siren buzzing. I say out loud, 'you've got to be kidding me!?!' and then start to imagine how the hell to get off the penthouse floor if there really was a problem. I start reliving the movie, The Towering Inferno, and roll over again. An announcement I can't hear except for two words you don't want to hear in the hospital, 'code red', signals the end of the problem. The siren stops, the lights flash for another 15 seconds, and then it's done. I remember feeling thankful that I didn't have to claw my way down the stairs with Bean on my arm, fleeing the inferno. A few minutes later (no joke!), the lights and siren start up again, but only go off for a half of a minute. Silence. I roll over and start to drool. For maybe two minutes, then... the vampires arrive. I roll off my bed, which is really a bench with a pad on it... and, notice it's 5:05 a.m. "Ah, Starbuck's is open!!!" So, I put on my slippers and stroll down to Starbuck's in my Blazer's PJ's and sweatshirt. A vision, I'm sure. Miss Perky behind the counter greets me and asks how my morning is... 'ooh, g-oo-d.... just enjoying the fire alarm wake-up call'... she laughs. I laugh at myself. When I'm asked at the door to be buzzed in, I just reply, "I'm just trying to get back in!" When I'm buzzed in I take two steps and then I hear the familiar cries of my Bean in agony. Vampires suck!!! The lady blew her two chances to get the blood work, so they called "Panda." Panda is a group that's usually in-house that specialize in getting blood out of the difficult people. Panda arrives... more horrific crying, sad and tired eyes glaring at us all as if to ask, "why the hell are you punishing me!!!" The Panda lady uses a light to find good veins, warms up the selected hand, and then gets some out, but then has to pull the needle. She gets the blood to drip out and scoops it up with the vile. Good times. Nothing like seeing and hearing your baby shriek in horror first thing in the morning. So, in my disgust I told Andi in front of the blood sucking lady... "tomorrow, we'll just tell them they can take their labs and shove 'em!" Seemingly semi-offended, she asked our night nurse why they need the labs again. We're not sure, but it sounds like her potassium is low. More questions for me to find out about today. However, at 4ish our nurse pulled the g-tube pouch up over the mic-key, and the bag started to collect. By 5:30ish, she emptied the contents and found she'd leaked 45ml. Granted, between that time, the Bean was under extreme duress with vampire #1 failing to get her blood, twice. After the Panda lady, our nurse drew another collection and I didn't get the measurement, but again - a nice volume was collected, although under duress.
In any case, I swaddled the Bean in her cozy blanket and she's been sleeping soundly ever since. I'm now on my second large coffee from Starbuck's. Last time we lived here, I suggested that Starbuck's delivers to our room, but now, I think parents in need should just get an IV drip o' Starbuck's. And just for the record, I think Kobo's coffee is 100 times better.
Monday, March 21, 2011
Readmitted
We've been readmitted. The penthouse floor, V.I.P. status. Bittersweet. So nice to see many people we know and missed, but sad to have to be here again. The Bean weighed-in less today, 12 lbs., 10 ounces. So, she lost a few oz's in the past two weeks. We been seen by a dozen people already. I've given the monologue several times, some more colorful than others, answered a gazillion questions, and reacquainted with the KP Attending Pediatrician whom we spent a week with last September. She's been poked for blood, catheterized for a clean urine sample (better than bagging, less contamination possible), x-rayed, her g-tube pouched (to collect the leakage for measurement), checked by our favorite cardiologist, nutrition, visited by many Dr's, students, and our nurse friends. All are amazed at how good she looks, how active she is, how advanced her cognitive skills have become. Other than her leaky g-tube and her need to put on weight... we wouldn't be here...so... they're on the case.
Andi and I are in our pj's and winding down a long day. Her with froggie, and me with some Adele, because they haven't yet implemented the adult beverage cart I suggested long ago. I swear they could fund a new building if they did offer it up to us overwhelmed and frazzled parents. Can you even imagine a happy hour mixer in the family lounge from 5-7?! THAT ... would be AWESOME! I'll bring the disco ball, some Earth, Wind & Fire, and let's paint this place a new shade for a few hours!!?! I know there are parents here going through ten levels of hell. We've been there, and it would be nice to be there to support others going through tough times. I've downloaded and will bring Oprah's Moscow Mule recipe! Now, there's a conversation starter!
Being away from home is going to be weird, so I emailed myself a most-precious picture I shot on my phone the other day:
Andi and I are in our pj's and winding down a long day. Her with froggie, and me with some Adele, because they haven't yet implemented the adult beverage cart I suggested long ago. I swear they could fund a new building if they did offer it up to us overwhelmed and frazzled parents. Can you even imagine a happy hour mixer in the family lounge from 5-7?! THAT ... would be AWESOME! I'll bring the disco ball, some Earth, Wind & Fire, and let's paint this place a new shade for a few hours!!?! I know there are parents here going through ten levels of hell. We've been there, and it would be nice to be there to support others going through tough times. I've downloaded and will bring Oprah's Moscow Mule recipe! Now, there's a conversation starter!
Being away from home is going to be weird, so I emailed myself a most-precious picture I shot on my phone the other day:
If you look closely, you will see that Andi is actually holding Maddux's paw. She loves him, and although he's really sweet with her - I'm sure he will enjoy a few quiet days without her wrecking his nerves. At the time this photo was shot, she was in the midst of getting an olive oil treatment for her dry / cradle cap. The weather here sucks, but, it's not THAT cold.
Tomorrow will be interesting. More tests. More visits. More question after question. Hopefully all will help get us some answers, and a new game plan!
Sunday, March 20, 2011
Inspired And Thankful!
When I can, I have been trying to catch-up on the blogs of other Mom's with kiddos with CHARGE. It's been very inspiring to read their experiences, struggles, but more importantly, witness their strength and resolve. I think the thing I find most comforting and encouraging, is seeing someone just like me going through similar trials and tribulations. I think it makes me feel less isolated and alone, as here are people that can totally relate to all of it, and thensome. It's an honor to read their blogs. I am thankful for the glimpse into their lives, and appreciate it more than they know. Ladies, you inspire me.
Andi's getting weighed again tomorrow morning. So, we'll see what the game plan is...
I did remind our Dr. of our vacation departure plans. I warned that I didn't want to get arrested breaking the Bean out of the hospital so we could catch a flight. I've had visions of paging him and asking him to bail me out of jail -- him staring down at the phone in disbelief of what I ask... Yes, I have weird thoughts sometimes... ...so what?! So, anyway, he's aware of our plans and promised that if we go back to Doernbecher's... it will not interfere with our trip! It was 87 degrees in Alabama yesterday, uhm yeah... there will be NO disruption of our vacation!
Lastly, just wanted to shout out a big ol' THANKS! for the various comments left by all. They all mean a lot to us, and we appreciate it. I've tried to leave a few on other blogs, and they don't make it very easy. Pick a profile... yeah, whatevah! Anyhow, thanks for the support. **Andi blows a raspberry!**
Andi's getting weighed again tomorrow morning. So, we'll see what the game plan is...
I did remind our Dr. of our vacation departure plans. I warned that I didn't want to get arrested breaking the Bean out of the hospital so we could catch a flight. I've had visions of paging him and asking him to bail me out of jail -- him staring down at the phone in disbelief of what I ask... Yes, I have weird thoughts sometimes... ...so what?! So, anyway, he's aware of our plans and promised that if we go back to Doernbecher's... it will not interfere with our trip! It was 87 degrees in Alabama yesterday, uhm yeah... there will be NO disruption of our vacation!
Lastly, just wanted to shout out a big ol' THANKS! for the various comments left by all. They all mean a lot to us, and we appreciate it. I've tried to leave a few on other blogs, and they don't make it very easy. Pick a profile... yeah, whatevah! Anyhow, thanks for the support. **Andi blows a raspberry!**
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