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MEMORIAL SERVICE /
Celebrate the extraordinary life of
LULA NEAVE WALKER MURRAY
Saturday, December 10, 2011
2:30pm
Brooklyn Society for Ethical Culture
53 Prospect Park West, Brooklyn, NY 11215
All are welcome, including children
In lieu of flowers or food we would love you to make a donation in Lula's name to Extreme Kids and Crew:
In lieu of flowers or food we would love you to make a donation in Lula's name to Extreme Kids and Crew:
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IN LIEU /
In lieu of flowers or food we would love you to make a donation in Lula's name to Extreme Kids and Crew:
LULA NEAVE WALKER MURRAY /
Lula Neave Walker Murray passed away peacefully in her sleep December 4
at 12:55am. She was in her mothers arms in a rocking chair overlooking
the East River, surrounded by her father, Grandpa Terry and Aunt
Caitlin, and listening to Ella Fitzgerald. She was a gift that we had
the pleasure of having in our lives for 18 months. She truly had a
village to care for her and many of you were an integral part in helping
her in her very challenging life. We are immensely grateful for all of
the love and support that you all gave to her and to us.
ON THE PRECIPICE /
It has been a week of life and death, and will continue to be for some time. Lula has contracted RSV and has been in the hospital since Saturday. What we thought was going to be another respiratory infection has turned into a near death illness.
In addition to RSV and pneumonia at several points Lula had what appeared to be several severe seizures. By Monday her pupils were 2 different sizes which is commonly a sign of catastrophic brain damage. When Sam and I arrived she was having difficulty breathing even with a BiPap mask on. The next step if she couldn't maintain her O2 levels is Intubation. It is the most painful moment of my life. Sam and I agreed that we did not want to intubate her, that this beautiful little girl had fought harder than we ever could have asked and that it wasn't fair or right to force her to stay alive. We signed the papers for DNR and DNI. I could barely hold the pen.
They managed to stabilize her breathing on the bipap. Sam and I stayed with her in the ICU that night, thinking it might be her last night. Somehow we slept a little. The Bellevue ICU is small and basic. It has the pallor of a public school and did not even have the ability to perform an EEG. But the staff was remarkable, attentive, warm, caring, incredibly thorough. We didn't really want to leave but lula needed an EEG so after some political wrangling between attendings she was transferred to Cornell where we have been ever since.
That night I went home with a palpable, indelible pain that not even Roans charming antics could temper. I began to see how empty our lives would be without Lula. As crowded and overwhelming as her schedule is, it has created a rhythm that we all live by. Once Roan was asleep I had nothing to do. One dinner, one bath, one bedtime felt so empty. We would no longer need my mom to stay over two nights a week. There would be no night nurse, no endless stream of therapists and meds and doctors appointments. We never wanted any of it, we only ever wanted two healthy children, but Lula has created an extraordinary life for all of us. I have never been so aware of her immense influence.
I woke up the next morning to the thought, once again, of our lives without Lula. Would I still say I have twins? Would Roan remember her? Would he always feel her presence, having lived intertwined with her for 9 months in utero?
Amazingly when I spoke to Sam a short time later the EEG results looked good. She was not having seizures. The CT scan had shown nothing to indicate brain swelling or bleeding. Her pupils were reacting and although uneven they had actually switched so the one that had been smaller was now bigger. She has utterly baffled the doctors with this. I am so glad that we did not intubate her because I know that Lula has chosen to fight to be here. We are helping her in every way we can but we are not doing it for her.
She is still critically ill but the RSV and the pneumonia are things that she can overcome. If she does get through this, however, she will still be Lula with all of her deficiencies and weaknesses and conditions. She will be vulnerable to this for the rest of her life and we all have to live here with her on the precipice of life and death as long as she chooses to be here with us.
Right now she is peaceful and calm. She is hooked up to so many things I can't really pick her up. Now we wait and see. We are taking things one day at a time.
In addition to RSV and pneumonia at several points Lula had what appeared to be several severe seizures. By Monday her pupils were 2 different sizes which is commonly a sign of catastrophic brain damage. When Sam and I arrived she was having difficulty breathing even with a BiPap mask on. The next step if she couldn't maintain her O2 levels is Intubation. It is the most painful moment of my life. Sam and I agreed that we did not want to intubate her, that this beautiful little girl had fought harder than we ever could have asked and that it wasn't fair or right to force her to stay alive. We signed the papers for DNR and DNI. I could barely hold the pen.
They managed to stabilize her breathing on the bipap. Sam and I stayed with her in the ICU that night, thinking it might be her last night. Somehow we slept a little. The Bellevue ICU is small and basic. It has the pallor of a public school and did not even have the ability to perform an EEG. But the staff was remarkable, attentive, warm, caring, incredibly thorough. We didn't really want to leave but lula needed an EEG so after some political wrangling between attendings she was transferred to Cornell where we have been ever since.
That night I went home with a palpable, indelible pain that not even Roans charming antics could temper. I began to see how empty our lives would be without Lula. As crowded and overwhelming as her schedule is, it has created a rhythm that we all live by. Once Roan was asleep I had nothing to do. One dinner, one bath, one bedtime felt so empty. We would no longer need my mom to stay over two nights a week. There would be no night nurse, no endless stream of therapists and meds and doctors appointments. We never wanted any of it, we only ever wanted two healthy children, but Lula has created an extraordinary life for all of us. I have never been so aware of her immense influence.
I woke up the next morning to the thought, once again, of our lives without Lula. Would I still say I have twins? Would Roan remember her? Would he always feel her presence, having lived intertwined with her for 9 months in utero?
Amazingly when I spoke to Sam a short time later the EEG results looked good. She was not having seizures. The CT scan had shown nothing to indicate brain swelling or bleeding. Her pupils were reacting and although uneven they had actually switched so the one that had been smaller was now bigger. She has utterly baffled the doctors with this. I am so glad that we did not intubate her because I know that Lula has chosen to fight to be here. We are helping her in every way we can but we are not doing it for her.
She is still critically ill but the RSV and the pneumonia are things that she can overcome. If she does get through this, however, she will still be Lula with all of her deficiencies and weaknesses and conditions. She will be vulnerable to this for the rest of her life and we all have to live here with her on the precipice of life and death as long as she chooses to be here with us.
Right now she is peaceful and calm. She is hooked up to so many things I can't really pick her up. Now we wait and see. We are taking things one day at a time.
A LITTLE GOES A LONG WAY /
The strangeness of my day-to-day life is masked as normal through unending repetition until I have a moment like this: I was on my way out the door to a yoga class, the first in six months or so, when the doctor I had paged earlier in the day called back. Lula spat up some brown mystery gunk overnight and it showed up in her residuals (basically her stomach contents back up through her g-tube into a large syringe- not for the squeamish) so I called the GI for her thoughts. She wanted to see Lula before Thanksgiving so she thought it best that I take her to the ER in Queens that day. I said ok, hung up, and went to yoga.
This is not what most people do, is it? A doctor says your child needs to go to the ER and you go to yoga first? It's not that I was ignoring any urgency-the doctor didn't want to see her until the afternoon- it's the fact that I was able to detach enough from the situation to go to yoga. One thing I've never been good at is compartmentalizing my life, but when everything is an emergency it's awkward finding ways to fit the rest of your life amid the crises. I find myself vacillating between and abundance of panic and an eerie indifference towards the same recurring events. That day was a day for indifference, or not so much indifference, but distance.
Yesterday we were again in the ER. This time Bellevue, this time for labored breathing. Friday night we had to put Lula on oxygen because she was wheezing and pulling her breath in an out as though she were breathing through a straw, but I fell asleep fine and slept hard. I have moved beyond being kept up with worry and into sleeping deeply to escape it. I woke up feeling jarred knowing we were not going to have the Saturday we had hoped for, so I had coffee and cereal, read about a baby who was rescued from a fire on Thanksgiving in the paper and then called the pulmonologist.
The Bellevue ER was great, and I was the polar opposite of my last time at Bellevue. I let the events wash over me and made little attempt to control anything. It was an extremely quiet day and the staff was fantastic and patient and thoughtful. I mostly sat holding Lu and then my friend Sharda came by for a visit - it is a true friend indeed who gives up a lovely Saturday afternoon to sit in the windowless Peds ER holding a sick baby.
They kept her overnight, and best of all they allowed us to have our night nurse come and stay with her. This was a huge advance for us because the night shift in the hospital is hell if you need to get any sleep at all. Our night nurse Beverly is tireless, attentive, a bit OCD (in a good way) and knows Lula better than we do during the night. She came to relieve m at 10:30 and immediately started rearranging things. She made Lula a nest from blankets and sheets and got her settled. I never thought I would be able to leave my baby in the hospital but I am coming to terms with the fact that raising Lula really is going to take a village, and that I am going to have to be OK with some self preservation at the expense of being with Lula all the time.
Sam is with her today and she is doing really well. Sleeping and peaceful. Hopefully she will be home tomorrow.
This is not what most people do, is it? A doctor says your child needs to go to the ER and you go to yoga first? It's not that I was ignoring any urgency-the doctor didn't want to see her until the afternoon- it's the fact that I was able to detach enough from the situation to go to yoga. One thing I've never been good at is compartmentalizing my life, but when everything is an emergency it's awkward finding ways to fit the rest of your life amid the crises. I find myself vacillating between and abundance of panic and an eerie indifference towards the same recurring events. That day was a day for indifference, or not so much indifference, but distance.
Yesterday we were again in the ER. This time Bellevue, this time for labored breathing. Friday night we had to put Lula on oxygen because she was wheezing and pulling her breath in an out as though she were breathing through a straw, but I fell asleep fine and slept hard. I have moved beyond being kept up with worry and into sleeping deeply to escape it. I woke up feeling jarred knowing we were not going to have the Saturday we had hoped for, so I had coffee and cereal, read about a baby who was rescued from a fire on Thanksgiving in the paper and then called the pulmonologist.
The Bellevue ER was great, and I was the polar opposite of my last time at Bellevue. I let the events wash over me and made little attempt to control anything. It was an extremely quiet day and the staff was fantastic and patient and thoughtful. I mostly sat holding Lu and then my friend Sharda came by for a visit - it is a true friend indeed who gives up a lovely Saturday afternoon to sit in the windowless Peds ER holding a sick baby.
They kept her overnight, and best of all they allowed us to have our night nurse come and stay with her. This was a huge advance for us because the night shift in the hospital is hell if you need to get any sleep at all. Our night nurse Beverly is tireless, attentive, a bit OCD (in a good way) and knows Lula better than we do during the night. She came to relieve m at 10:30 and immediately started rearranging things. She made Lula a nest from blankets and sheets and got her settled. I never thought I would be able to leave my baby in the hospital but I am coming to terms with the fact that raising Lula really is going to take a village, and that I am going to have to be OK with some self preservation at the expense of being with Lula all the time.
Sam is with her today and she is doing really well. Sleeping and peaceful. Hopefully she will be home tomorrow.
TASH TIME /
HAPPY THANKSGIVING! /
It seems unbelievable that a year ago today Roan tried his very first solid food - sweet potatoes, no less. You can see Sam giving Lula a bottle in the background. This year she's having sweet potatoes too.
SINCEREST FORM OF FLATTERY /
Roan is deeply in the throes of the imitation phase of toddlerhood. He is rapidly absorbing and then repeating everything that we all do. It's a bit like having a small, spastic mirror around and it's a bit intimidating. For one thing, Roan's obsession with sweeping has expanded into a full blown Joan Crawford style cleaning frenzy. At every opportunity he is wiping down the baseboards or scrubbing the top of his highchair. In the bathtub I gave him a washcloth with soap and instead of washing himself he began polishing the tiles.
Clearly he has picked this up from us adults, and it does feel like we are all cleaning, washing, or folding something eternally, but if this were true then why does our house look like a yard sale most of the time?
Clearly he has picked this up from us adults, and it does feel like we are all cleaning, washing, or folding something eternally, but if this were true then why does our house look like a yard sale most of the time?
ROID RAGE /
Talk about adding insult to injury: among the many side effects that the ACTH has had on Lula (fatigue, elevated blood pressure, irritability, being stabbed with a needle every day) Lula's face has suffered the full wrath of the steroids. She's puffed up so much her cheeks look like two water balloons, and there's a constellation of acne between her brows.
We have started titering her down off the ACTH so she will be completely free of it by December 2. The puffiness should recede along with the other side effects. Then we wait and see if all this misery was worth it.
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| Pre ACTH |
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| Cheeky McPuffypants |
We have started titering her down off the ACTH so she will be completely free of it by December 2. The puffiness should recede along with the other side effects. Then we wait and see if all this misery was worth it.
TURN OFF THE DARK /
It was a little surreal around here last week. We had a commercial for Garnier filming upstairs and it took over the whole block. The streets were cleared of cars and overtaken with tents, lights, cables and very busy people. Our neighbors were ready to mutiny. Our poor landlords were blindsided by the scale of it all.
Monday morning they started at 4am. At 6am I marched up in my robe and slippers and told them to stop talking or they would wake up my kids. I was SO tempted to dump Roan on them when he woke up at 6:30. While it was grey and raining all day outside, inside it was sunny California all day. It kind of messed with our heads.
Sam's mom was staying on the top floor in our landlords spare room and had to weave her way through the mayhem every day. She was a good sport about it, willing to put up with smarmy production assistants so she could get her hands on her grandkids.
Monday through Wednesday we had my mother AND Sam's mother staying with us (I will pause here for full effect). For some reason when we get them together they sing a lot. This time it was Teddy Bear's picnic. They also conspired to buy Roan a scooter and even managed to take the kids to the diner.
We all had a lovely time. Joss got to indulge the kids, Sam got to catch up with his mom and I got to take some time to myself. Everyone wins!! Joss is so enamored with the babies. Here she is with Sam and the kids and I think her face says it all (either that or she's really enjoying "No Bed without Ted").
Monday morning they started at 4am. At 6am I marched up in my robe and slippers and told them to stop talking or they would wake up my kids. I was SO tempted to dump Roan on them when he woke up at 6:30. While it was grey and raining all day outside, inside it was sunny California all day. It kind of messed with our heads.
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| Photo Courtesy Sam |
Monday through Wednesday we had my mother AND Sam's mother staying with us (I will pause here for full effect). For some reason when we get them together they sing a lot. This time it was Teddy Bear's picnic. They also conspired to buy Roan a scooter and even managed to take the kids to the diner.
We all had a lovely time. Joss got to indulge the kids, Sam got to catch up with his mom and I got to take some time to myself. Everyone wins!! Joss is so enamored with the babies. Here she is with Sam and the kids and I think her face says it all (either that or she's really enjoying "No Bed without Ted").
SWINGING IN THE SUN /
Me and Roan
PLAYING HOOKEY /
Continuing our marathon of grandparents, Granny Joss arrived on the day that my dad and stepmom left.
I always seem to realize too late that I am burned out, like an overtired child who hasn't napped. I've been in a foul mood, overwhelmed and exhausted and fed up with everything. Luckily I have been able to basically take the last 3 days off and be a very backseat parent. Joss and Sam and a series of sitters have all but taken over. I got my hair done, went to happy hour, and had an all afternoon Mimosa brunch with my oldest and dearest friends. I feel restored.
Unfortunately it wasn't so great for everyone else, especially Sam. Both kids have come down with some virus that has led to extremely unpleasant diaper changes and projectile vomiting. I am so glad I skipped out on this one :)
I always seem to realize too late that I am burned out, like an overtired child who hasn't napped. I've been in a foul mood, overwhelmed and exhausted and fed up with everything. Luckily I have been able to basically take the last 3 days off and be a very backseat parent. Joss and Sam and a series of sitters have all but taken over. I got my hair done, went to happy hour, and had an all afternoon Mimosa brunch with my oldest and dearest friends. I feel restored.
Unfortunately it wasn't so great for everyone else, especially Sam. Both kids have come down with some virus that has led to extremely unpleasant diaper changes and projectile vomiting. I am so glad I skipped out on this one :)
WAITING /
I do not understand how anyone can have Munchausenby-proxy syndrome. How can having a sick child make anyone feel like they are getting more attention? I don't know of anything that makes me feel invisible, my time expendable, and my value as a mother reduced to nursemaid more than being around doctors.
Of all the indignities, frustrations, complications etc that Lula's complex web of medical support entails, nothing makes me lose my shit more than being made to wait for hours while being told nothing. I am so tapped out, my wait time reserves long ago used up, that I am reduced to tears at any appointment where I have to wait more than an hour.
Thursday Lula was meant to have 2 appointments at Bellevue, one with her PNP (like a pediatrician) and one with the Orthopedist. We arrived at 9:30am. I was told to get an ETA from Ortho and if it was going to be a while her PNP would see us first. After 20 minutes at Ortho I was told Lula was the next patient so we should stay put. Over an hour later and there we still were. I started to get irritated.
The receptionist had the listless pallor of someone who hates their job and no doctors were reachable. Finally another 20 minutes later I got an answer: Lula was the next patient. Still. It was nearly noon. Lula was supposed to be home for a feed by 12:30pm and I had a phone conference scheduled for 1:30. We had been there for 2 and a half hours and still hadn't seen anyone.
The senior resident came out to say "yeah, sorry, things are backed up today" as though it wasn't like this every single day. At that point I was livid. Finally her PNP came down to the Ortho office to see what was going on. She was more concerned that I was being difficult than why I was being difficult. Her response was, well this is what it's like and you should expect to wait for however long they want you to. This is the way it is.
Why should I expect this? I have no idea what their reasoning is but if one of them was expected to, say, wait 3 hours to check out at the grocery store or 3 hours to go through the Lincoln Tunnel or 3 hours to buy golf clubs I think they might object. It's not a matter of medicine, it's just bad manners.
I can't tell you why exactly, of all the stress in my life this is the thing I truly cannot handle, but I think it is the helpless wasted time that gets to me. Lula's (and therefore my) life is scheduled within half hour increments pretty much 24 hours a day. I go to great lengths to maximize the miniscule amount of time she has each day to go to the park or when I can possibly do laundry or cook or run errands that to spend 3 whole unplanned hours sitting in an office where I can't even get phone reception makes me feel a bit like my life has been hijacked. If I had 3 hours to do what I wanted with it would never be this.
By the time the doctor came in I was beside myself, bitter and full of tears. She said something about how important it was that she see each and every patient as long as they needed and then proceeded to spend less than 5 minutes with us. She said, "so tell me what's been going on with Lula?" and I could tell that she absolutely could not remember Lula at all and hadn't even looked at her chart before the resident pulled it up on the computer. I told her that Lula's physical therapist had requested supportive braces and she said we could get those and then she sent us to have casts made. The guy doing the casts looked at my puffy eyes and said "tough day, huh" and I said "every day". He spent more time with us than the doctor did. We had a hurried meeting with her PNP, which I wound up having to finish on the phone later.
I look around at the herds of other people who are there and I am amazed that there isn't a mutiny. Either I am the most high maintenance mother ever and they have all studied Zen meditation, or they are all resigned to a life of waiting rooms. They aren't even reading magazines, they just stare blankly. Their kids sit contorted in special wheelchairs and groan and drool. There is no anger but there is no joy either. Everyone seems numb and that scares me, but I'm sure the doctors prefer it.
I don't want to be numb. I don't want to be OK with other people wasting my time. Therefore I am going to keep looking for another doctor for Lula until I am satisfied, or at least not miserable.
Of all the indignities, frustrations, complications etc that Lula's complex web of medical support entails, nothing makes me lose my shit more than being made to wait for hours while being told nothing. I am so tapped out, my wait time reserves long ago used up, that I am reduced to tears at any appointment where I have to wait more than an hour.
Thursday Lula was meant to have 2 appointments at Bellevue, one with her PNP (like a pediatrician) and one with the Orthopedist. We arrived at 9:30am. I was told to get an ETA from Ortho and if it was going to be a while her PNP would see us first. After 20 minutes at Ortho I was told Lula was the next patient so we should stay put. Over an hour later and there we still were. I started to get irritated.
The receptionist had the listless pallor of someone who hates their job and no doctors were reachable. Finally another 20 minutes later I got an answer: Lula was the next patient. Still. It was nearly noon. Lula was supposed to be home for a feed by 12:30pm and I had a phone conference scheduled for 1:30. We had been there for 2 and a half hours and still hadn't seen anyone.
The senior resident came out to say "yeah, sorry, things are backed up today" as though it wasn't like this every single day. At that point I was livid. Finally her PNP came down to the Ortho office to see what was going on. She was more concerned that I was being difficult than why I was being difficult. Her response was, well this is what it's like and you should expect to wait for however long they want you to. This is the way it is.
Why should I expect this? I have no idea what their reasoning is but if one of them was expected to, say, wait 3 hours to check out at the grocery store or 3 hours to go through the Lincoln Tunnel or 3 hours to buy golf clubs I think they might object. It's not a matter of medicine, it's just bad manners.
I can't tell you why exactly, of all the stress in my life this is the thing I truly cannot handle, but I think it is the helpless wasted time that gets to me. Lula's (and therefore my) life is scheduled within half hour increments pretty much 24 hours a day. I go to great lengths to maximize the miniscule amount of time she has each day to go to the park or when I can possibly do laundry or cook or run errands that to spend 3 whole unplanned hours sitting in an office where I can't even get phone reception makes me feel a bit like my life has been hijacked. If I had 3 hours to do what I wanted with it would never be this.
By the time the doctor came in I was beside myself, bitter and full of tears. She said something about how important it was that she see each and every patient as long as they needed and then proceeded to spend less than 5 minutes with us. She said, "so tell me what's been going on with Lula?" and I could tell that she absolutely could not remember Lula at all and hadn't even looked at her chart before the resident pulled it up on the computer. I told her that Lula's physical therapist had requested supportive braces and she said we could get those and then she sent us to have casts made. The guy doing the casts looked at my puffy eyes and said "tough day, huh" and I said "every day". He spent more time with us than the doctor did. We had a hurried meeting with her PNP, which I wound up having to finish on the phone later.
I look around at the herds of other people who are there and I am amazed that there isn't a mutiny. Either I am the most high maintenance mother ever and they have all studied Zen meditation, or they are all resigned to a life of waiting rooms. They aren't even reading magazines, they just stare blankly. Their kids sit contorted in special wheelchairs and groan and drool. There is no anger but there is no joy either. Everyone seems numb and that scares me, but I'm sure the doctors prefer it.
I don't want to be numb. I don't want to be OK with other people wasting my time. Therefore I am going to keep looking for another doctor for Lula until I am satisfied, or at least not miserable.
VISITS /
Just ended another visit from my dad and stepmom, over from London for a week.
On arrival the first words out of their mouths are always, "what can we do to help?" Despite being very much out of practice, they always jump right in - or not so much jump since their knees aren't what they used to be - they sidle right in and do anything that needs doing. Cam followed Roan as he tottered around the playground and even helped give him a bath. I have managed to pull out my back so my dad offered to wear Lula to the park and do all the heavy lifting.
On arrival the first words out of their mouths are always, "what can we do to help?" Despite being very much out of practice, they always jump right in - or not so much jump since their knees aren't what they used to be - they sidle right in and do anything that needs doing. Cam followed Roan as he tottered around the playground and even helped give him a bath. I have managed to pull out my back so my dad offered to wear Lula to the park and do all the heavy lifting.
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| Dad and Roan at the top of the slide at Brooklyn Bridge Park |
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| Modern day Gramps |
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| Bedtime! |
GOOD THINGS /
A few new positive updates on Lula:
She had a follow-up EEG on Friday (with a really irritating tech who kept telling me to "hold her head still" while he tried to put the electrodes on her. How are you supposed to stop someone from moving their head??) that the neurologist was really pleased with so she has gone down to one dose of ACTH per day. We are having the night nurses do it so we have one less medical task to do ourselves.
Today Lula, mom, and I went to the gastroenterologist. Lula got a new g-tube, which was just in time because the old one was looking like something that might have been fashioned from the junk yard on Sanford and Sons. The plug had broken off so Sam had ingeniously made a plug from an old feeding tube but that started to leak so he plugged the end of something else in that. Plus the hair clip clamp to keep it all in place made it look like a hot mess. The new one isn't as flat to her skin but it locks and is much nicer. The only caveat from the doctor was that it could pop out of her stomach more easily, and much like an earring hole you have to shove something in it ASAP to keep it from closing up. I am completely impervious to any of this by now, thankfully.
The doctor also decided to give her less food. She has gained so much weight (she is now 19 pounds!) that they are thinking she doesn't need as much as she is getting and are reducing her to 6 feeds a day from 7. This may actually solve so many issues that we have and that especially the night nurses have with her being fussy, gassy, and uncomfortable after feedings. Plus I have more recipes to try with the blended foods now.
We were in an out of there in an hour and a half, so mom and I had some celebratory bubble tea (we were in Flushing) before heading back.
Lula and Sam crashed out on the sofa later, both having had quite a day.
She had a follow-up EEG on Friday (with a really irritating tech who kept telling me to "hold her head still" while he tried to put the electrodes on her. How are you supposed to stop someone from moving their head??) that the neurologist was really pleased with so she has gone down to one dose of ACTH per day. We are having the night nurses do it so we have one less medical task to do ourselves.
Today Lula, mom, and I went to the gastroenterologist. Lula got a new g-tube, which was just in time because the old one was looking like something that might have been fashioned from the junk yard on Sanford and Sons. The plug had broken off so Sam had ingeniously made a plug from an old feeding tube but that started to leak so he plugged the end of something else in that. Plus the hair clip clamp to keep it all in place made it look like a hot mess. The new one isn't as flat to her skin but it locks and is much nicer. The only caveat from the doctor was that it could pop out of her stomach more easily, and much like an earring hole you have to shove something in it ASAP to keep it from closing up. I am completely impervious to any of this by now, thankfully.
The doctor also decided to give her less food. She has gained so much weight (she is now 19 pounds!) that they are thinking she doesn't need as much as she is getting and are reducing her to 6 feeds a day from 7. This may actually solve so many issues that we have and that especially the night nurses have with her being fussy, gassy, and uncomfortable after feedings. Plus I have more recipes to try with the blended foods now.
We were in an out of there in an hour and a half, so mom and I had some celebratory bubble tea (we were in Flushing) before heading back.
Lula and Sam crashed out on the sofa later, both having had quite a day.