This year has been the hardest yet. I don't say that lightly either. I know the first year of Lucy life was hard and it was littered with a lot of 'downs', but the difference is, at the time we didn't know anything else. We didn't have time at home with Lucy, she didn't have the personality she has developed over the last three years and she didn't have a little brother. This year has dragged us through the mud. I sometimes wonder if she will ever be that person she was before this surgery. I see flashes of her old self, but they are so quickly replaced by tears when I tell her she can't have water or she has to wait x amount of minutes before her next toothbrush dip or we need to do a finger prick to test her coagulation levels. Yes, that's right.....we got our INR machine, so I have the pleasure of testing her myself.
If you didn't hear, or are not on Facebook, we were back in the hospital for another visit. It was luckily a short stay and we made it home for Christmas, but it was just another reminder that although we are home, Lucy remains sick and fragile.
A week before Christmas, Lucy woke up in the morning and her mouth was all bloody, her lips were cracked and so dry. We consulted with her cardiologist and decided to drop her diuretics on Tuesday knowing that we had an appointment on Friday to see Dr. Husayni. It's no secret that she is on a lot of diuretics and because of the aspiration pneumonia that kept us in the hospital during her G tube surgery, she has been very limited in her oral intake. Couple that with the decrease in her feeds because of her vomiting and she was super dry. Wednesday and Thursday she wasn't herself, coughing a lot and more tired than normal. Friday morning we packed up and headed to the hospital for her appointment. She looked worse for wear. We started with an echo to look at heart function and check for effusions. Unfortunately, we could not see much fluid, so an x ray was ordered and it looked bad. On all accounts we should have been admitted, but given it was a couple days before Christmas, we thought going back up on her dose of bumex (diuretic) would hopefully clear everything up. As a precaution, the intensivist that was on over the weekend came down to look at Lucy. It gave them a baseline. We left and I was to send a picture of Lucy the following morning for them to review. We didn't even make it to the morning. Around 5:30 pm Lucy was still not herself, so we put on the pulse ox and her saturations were in the low 60's. I immediately called the PSHU to let them know. We were told to wait an hour to see if they would come up to her baseline of 73. In that hour, we packed a bag. An hour passed and nothing had changed, her saturation had actually lowered (upper 50's, very scary). We packed the car and headed to the hospital.
We got to the hospital and were admitted directly to the PSHU. Lucy opted for a wheelchair instead of a wagon. When we got up to the ICU, Dr. Sajan looked at Lucy and was almost puzzled as to why we were there. Physically she looked pretty good, so we put on a pulse ox and it read 55. We needed to place an IV, but when we tried, Lucy went ballistic and dropped her saturations into the 30's. We ordered versed and decided that nitric was necessary. Seriously, versed is nothing to Lucy at this point. She screamed bloody murder through all of it (as I held her down). A couple doses of IV diuretics, some antibiotics and nitric and within twelve plus hours she was back to her norm. We decided after weaning the nitric and switching back to oral meds, we would give her one more night to monitor and then home. Just in time to host Christmas eve and for Santa.
We believe this episode was caused by aspiration, clouding her lungs and making the weaning of diuretics impossible. With Lucy's oral intake at a minimum, her aspiration has to be mostly from vomiting. So here we are, December 29th, headed back to the hospital for another procedure that will require us to stay overnight at the hospital. I would not have thought we could have squeezed another stay at the hospital this year but.......we are first case for a vocal cord injection. We are hoping that the injection will in essence, pump up her left vocal cord and allow the right side to compensate to fully close. What does this do? When Lucy goes to swallow, this will close her vocal cords completely closing off her airway and allowing all liquid to go down her esophagus to her belly.
I'll write more later when I have had time to process. In the meantime we very much need prayers that this procedure will work. This is a temporary fix which could not work at all. There's a chance it lasts a year, but the likelihood is it lasts closer to 3-6 months, in which we would need to go back and do another injection.
Specific prayer requests
~vocal cord injection works and lasts a year
~there are no complications and we are discharged on Saturday
~After the procedure we can start to allow her to drink liquids
Friday, December 29, 2017
Monday, December 18, 2017
Red Tie
In 2014 the Children's Heart Foundation held their first Red Tie Ball, even though Lucy was in the hospital at the time, we were able to attend. I fell in the love with the event for a few reason:
- Obviously.....raising money for CHD research. Without this funding, advancements that have helped children like Lucy live past their first birthday and some into adulthood would not be possible.
- A night out with my husband. Anyone with children will tell you they can put strain on a marriage. When you add a chronic illness and A LOT of time spent apart due to splitting time at the hospital that strain can multiply. So "nights out" however infrequent are so important
- Honoring those in the medical field that have had an impact on our lives. I think sometimes in the wake of critical illness, the doctors, nurse practitioners and nurses take a back to seat to ups and downs of this journey. The Red Tie Ball is a perfect setting to celebrate them.
The past two years, Lucy's doctor's have been recognized. Her surgeon, Dr. Ilbawi and her cardiologist, Dr Husayni. This year, Sarah, a nurse practitioner in the PSHU was honored with the Heart of Gold Award and I was humbled to be chosen to introduce her. Her impact is beyond words, but I tried hard to encompass how much she means to our family.
Here is what I said:
Roughly four years ago, my husband and I stepped into
Advocate Children’s hospital for the first time. Unbeknownst to us, this hospital would become
our second home. Our daughter, Lucy was
diagnosed Hypoplastic Left Heart Syndrome and she has done nothing by the book. At one of our first appointments, I remember asking about recovery time, little
did I know those numbers would never apply to us. Lucy made us wait two months in the hospital
before she was ready for her Norwood. A routine
catherization turned into an extra surgery and this summer after her Fontan she
made us go back to the operating room to fenestrate, TWICE. We have spent a good amount of time in the
hospital, so it’s no surprise that the staff also became our family.
I met Sarah in 2014, during our first inpatient stay with
Lucy. While we didn’t have a lot of
interaction, I have one memory of her from that time. We are standing in bed 6,
quickly approaching 90 days in the hospital.
Lucy was technically not critical, but she cried a lot which was keeping
us in the ICU. We were discussing a move to the floor and Sarah
looked at me and said,
"We would send Lucy down to the floor, but they will call
up every time she cries. If you want
Lucy to move down there, you’ll have to move into the hospital."
Sounds like a dare, right? Over the summer I had the opportunity to get to know
Sarah. What sounded like a dare, was
just the truth. My daughter was going to
need someone to be with her 24 -7 and Sarah knew that.
Her brutal honesty coupled with her wit and humor help to
soften the blow of the reality that is CHD.
It’s what kept me grounded over our 100 day hospital stay. It’s what put
a smile on my face at least once a day.
How do you tell a mom whose been bedside for 60 days, there’s no way
you’ll be out of the hospital in the next month and still make her smile. That is Sarah.
Aside from her humor, her knowledge and ability to
explain all things medical to a parent that is just trying to survive is
impeccable. Sarah spent countless hours in Lucy’s room
discussing all of her issues, the approach and alternatives, medication and
their impact, reviewing x-rays until I was comfortable in my
understanding. I often get complimented
on how much I understand, and that is a credit to Sarah.
All these characteristics make Sarah an amazing nurse
practitioner, but what truly makes her heart gold is her passion for her
kids. She is a fierce protector and
advocate of her patients. She has
protected Lucy through and through, and she has stood in when I couldn’t be in
the room……two trips placing NJ tubes, a bedside upper GI, an ENT scope and the
removal of five chest tubes at the same time.
Lucy has some serious anxiety when it comes to the hospital. But every time we go for an appointment or
labs, one of the first things she says is ‘where’s my new friend Sarah?” and
that is proof that Sarah’s impact far extends the hospital room.
I am honored to present this award to Sarah because from
a parent and patient perspective she truly exemplifies a heart of gold.
*******************************************************************
As I saw Sarah surrounded by families and colleagues at this event, it is clear she is respected, admired and loved. I am truly grateful for her knowledge, her input, her humor and her friendship.
new faces, new places
We are just over one week home and starting to settle in. I am not going to lie, the first two night home were hard. We were on feeds every four hours that ran over an hour. The first night looked something like this:
7pm feed
8pm flush line and take of tube.
11 pm feed
12 am flush line and take of tube
3 am feed
4 am flush line and take off tube
5 am start work
When I started this blog back in 2013, it was a way to keep family and friends updated on what was happening with the pregnancy, birth and Lucy's heart journey. While that is still the main focus, it's allowed me a place to air my feelings, good and bad, celebrate accomplishments and to share with Lucy (eventually) those that impacted our lives during this journey.....see next post.
7pm feed
8pm flush line and take of tube.
11 pm feed
12 am flush line and take of tube
3 am feed
4 am flush line and take off tube
5 am start work
We did this for two nights and I quickly realized it was not a
schedule any of us could maintain! Lucy was awake for the
beginning and end of the feeds to attach or remove the tube extension, so she
wasn't getting good sleep either. Do you know what a toddler can be like
with no sleep....so you can guess that our days weren't all sunshine and rainbows.
Add to that, she threw up after 3 straight feeds going into Friday. We
decided to adjust the schedule.
We came home on 6 feeds of 135
mL over an hour for a total of 810 mL (and about 650 calories). Since she wasn't able to keep
it down and we also want to cater to a normal eating schedule, we lowered the
volume and went to 3 feeds during the day (100 mL) at breakfast, lunch and
afternoon snack. Then before bed we hook her up and do continuous feeds
from 8 pm to 5 am. This way everyone gets some good sleep and we are
still shutting off the feeds in time for her belly to prepare for
breakfast. Our medications have not changed, but we are adjusting the
schedule to coincide with feeding so we aren't taking the tube on and off.
The g tube is something to get
used too. The first couple days Lucy would cry anytime we picked it up,
mentioned feeds or medicine. I am not sure if it actually hurt when
putting the tube in, or if it was more mental than anything, but I too had some
anxiety around it. Just like everything else, the more you do it, the
easier it gets.
After being the hospital for so
long, I always want our return home to speed up recovery. I wish it were
that easy: that her eating would turn around, that the throwing up would
stop, that physically she could do everything like before. But all of it
takes time and I for one can't wait for us to be once again tube free doing all
things normally. In order to get to that point we decided to get a second
opinion regarding matters not of the heart. We scheduled our first
appointment with Lurie Children's hospital in their Aerodigestive
Program. (Unfortunately for us, Advocate children's hospital does not
have one). The program serves children with complex airway disorders, requiring
pulmonary, upper digestive tract, sleep voice and swallowing evaluations.
We are hoping this program will be able to help us answer some questions
regarding digestion and her vocal cord paresis and also help keep her lungs
healthy. The appointment went well (aside from the flexible scope we had
to do). We met with GI, ENT, speech and the APN. We came out of it
with our first procedure scheduled: a gastric emptying test at the
beginning of January. If you know me, you know I am a creature of routine
and change is hard for me. I like to plan. The arrival of Lucy
almost 4 years ago has really challenged me in that area of my life.
Yet again, this will be another 'change' we will tackle. New faces,
new hospital, new location. The clinic is once a month, so we'll head to
the city and I can only assume this will become part of our new routine that is
bound to change.
Here we are in the waiting room
at Lurie's
And Lucy with her trusty drinking toothbrush
When I started this blog back in 2013, it was a way to keep family and friends updated on what was happening with the pregnancy, birth and Lucy's heart journey. While that is still the main focus, it's allowed me a place to air my feelings, good and bad, celebrate accomplishments and to share with Lucy (eventually) those that impacted our lives during this journey.....see next post.
Saturday, December 2, 2017
frail
Lucy is fragile. Lucy has had life saving surgery. Lucy has been close to death. Those words are hard to say and it's probably why I have never said them. But the reality is that she is very fragile and minor surgery like a g tube is making that evident. I know, I know, no surgery is minor. But compared to what we have been through for Lucy it should be. It's possible that I want her to be strong physically so I convinced myself she is. Yet again, I have been fooled.
Maybe it was the success of our NG trial that had me so hopeful. We placed the NG tube Friday night (thank you to those that offered to come help, it was truly appreciated). We did continuous feeds at 20 mL/hour overnight. Saturday we increased to 30 mL/hour. With minimal throwing up, we decided to try some bolus feeds. I know, optimistic. To my surprise, she handled 60 mL/hour, then three more bolus feeds at 90 mL/hour. Going into this surgery that was our biggest concern, her stomach couldn't handle the feeds. Surgery on Monday went as expected with no issues. The hardest part was no eating or drinking the first day. Tuesday we could eat so we made a grocery list to ensure we had all the food she wanted.
-black olives
-extra sharp cheddar cheese
-canned green beans
-peanut butter and honey for sandwiches
-strawberries
-grapes, the peeled ones (she doesn't know I do this by hand or she does and does not care)
-orange juice
-orange chips (sour cream and cheddar)
-crackers
Sour cream and guacamole were added because those are some favorite from home.
Quite the palette for three year old. As much as she asks for food, she eats hardly any.
Tuesday, we started feeds slowly at 20 mL/hour for four hours. No issues! But slowly as the day went on her breathing changed. We started her first bolus feed of 60 mL/hour, but mid way through she looked really distended. We stopped and gave her a glycerin chip to help her poop. The doctor decided it was better to do continuous feeds overnight.
By Wednesday morning, holy crap......she was puffy! So much so, she dropped her saturations to the low 50's and we had to switch over to high flow oxygen at 10 liters.
The stress of this minor surgery (I use that term loosely) wreaked havoc on her body. Her x-ray on Tuesday and Wednesday (along with her echo) showed a small effusion, but nothing that should be impacting her this heavily. Wednesday the team decided to give an IV dose of lasix, and boy oh boy. her diaper was huge. Although it helped it didn't solve the problem. Lucy kept dipping her saturations and she started retracting (for those that don't know retractions are a sucking in of the skin in between or around the bones of the chest when inhaling). Honestly before this....I have never seen Lucy retract.
We hoped the extra IV diuretics would do the trick, so we gave Lucy a day and skipped x-ray on Thursday and took a trip down to radiology Friday morning. An x-ray can be more clear when you stand than laying in a bed (hence the trip). Probably a good thing we did. The x-ray showed the same small effusion and aspiration pneumonia. This girl seriously can't catch a break.
How did this happen? It's possible some of this has been happening slowly over the last couple months. Although we tried hard to restrict her from thin liquids, I can't say she hasn't gotten her hands on some. It's also possible, it happened over the course of this week. With being intubated for surgery, more damage to her vocal cords could have allowed small amounts of liquid to slip into her lungs. Either way it happened, it doesn't really matter, because it's there and we have to stay until it clears up. Today, in order to do everything possible, we put Lucy back on high flow with nitric, added IV diuretics back, started an antibiotic and restricted her drinking. Feels like square one, nitric was a bitch to wean over the summer and I am not looking forward to doing it again.
This was a huge blow and evidence of Lucy's frailty but we still have some good news to report. Lucy is successfully handling her feeds (on a home regimen at that...this is huge!). Although we will probably be in the hospital longer than we wanted, we can start to play around with her feeds. The worst part is the tube site is still pretty sore and she HATES when we have to take the tube on and off. It should get better as it heals, but for know it sucks!
Her demeanor is touch and go. Sometimes she is great and just hilarious! Bossing people around, she literally told one of the cardiac fellows to go get her ice. She also still has a little PTSD from our summer. I have to give all her meds and anytime someone is by her bed she says "She is not going to touch me, right?" Breaks my heart! We have been able to get her up and out of bed. Unfortunately we have had to use presents under the Christmas tree in the unit to do so. There is a Mickey Mouse figure that "brings presents" but the caveat is that Lucy has to walk there from her room to get the present. Her first present was a backpack doll house courtesy of my Aunt Betsy and her granddaughter (who knows hospital life all too well) and her second present was Sadness (her favorite character from the movie inside out) courtesy of one of our favorite nurses, Kate. Hopefully we bust out of the hospital soon, because she won't have any other presents to get come Christmas
Maybe it was the success of our NG trial that had me so hopeful. We placed the NG tube Friday night (thank you to those that offered to come help, it was truly appreciated). We did continuous feeds at 20 mL/hour overnight. Saturday we increased to 30 mL/hour. With minimal throwing up, we decided to try some bolus feeds. I know, optimistic. To my surprise, she handled 60 mL/hour, then three more bolus feeds at 90 mL/hour. Going into this surgery that was our biggest concern, her stomach couldn't handle the feeds. Surgery on Monday went as expected with no issues. The hardest part was no eating or drinking the first day. Tuesday we could eat so we made a grocery list to ensure we had all the food she wanted.
-black olives
-extra sharp cheddar cheese
-canned green beans
-peanut butter and honey for sandwiches
-strawberries
-grapes, the peeled ones (she doesn't know I do this by hand or she does and does not care)
-orange juice
-orange chips (sour cream and cheddar)
-crackers
Sour cream and guacamole were added because those are some favorite from home.
Quite the palette for three year old. As much as she asks for food, she eats hardly any.
Tuesday, we started feeds slowly at 20 mL/hour for four hours. No issues! But slowly as the day went on her breathing changed. We started her first bolus feed of 60 mL/hour, but mid way through she looked really distended. We stopped and gave her a glycerin chip to help her poop. The doctor decided it was better to do continuous feeds overnight.
By Wednesday morning, holy crap......she was puffy! So much so, she dropped her saturations to the low 50's and we had to switch over to high flow oxygen at 10 liters.
The stress of this minor surgery (I use that term loosely) wreaked havoc on her body. Her x-ray on Tuesday and Wednesday (along with her echo) showed a small effusion, but nothing that should be impacting her this heavily. Wednesday the team decided to give an IV dose of lasix, and boy oh boy. her diaper was huge. Although it helped it didn't solve the problem. Lucy kept dipping her saturations and she started retracting (for those that don't know retractions are a sucking in of the skin in between or around the bones of the chest when inhaling). Honestly before this....I have never seen Lucy retract.
We hoped the extra IV diuretics would do the trick, so we gave Lucy a day and skipped x-ray on Thursday and took a trip down to radiology Friday morning. An x-ray can be more clear when you stand than laying in a bed (hence the trip). Probably a good thing we did. The x-ray showed the same small effusion and aspiration pneumonia. This girl seriously can't catch a break.
How did this happen? It's possible some of this has been happening slowly over the last couple months. Although we tried hard to restrict her from thin liquids, I can't say she hasn't gotten her hands on some. It's also possible, it happened over the course of this week. With being intubated for surgery, more damage to her vocal cords could have allowed small amounts of liquid to slip into her lungs. Either way it happened, it doesn't really matter, because it's there and we have to stay until it clears up. Today, in order to do everything possible, we put Lucy back on high flow with nitric, added IV diuretics back, started an antibiotic and restricted her drinking. Feels like square one, nitric was a bitch to wean over the summer and I am not looking forward to doing it again.
This was a huge blow and evidence of Lucy's frailty but we still have some good news to report. Lucy is successfully handling her feeds (on a home regimen at that...this is huge!). Although we will probably be in the hospital longer than we wanted, we can start to play around with her feeds. The worst part is the tube site is still pretty sore and she HATES when we have to take the tube on and off. It should get better as it heals, but for know it sucks!
Her demeanor is touch and go. Sometimes she is great and just hilarious! Bossing people around, she literally told one of the cardiac fellows to go get her ice. She also still has a little PTSD from our summer. I have to give all her meds and anytime someone is by her bed she says "She is not going to touch me, right?" Breaks my heart! We have been able to get her up and out of bed. Unfortunately we have had to use presents under the Christmas tree in the unit to do so. There is a Mickey Mouse figure that "brings presents" but the caveat is that Lucy has to walk there from her room to get the present. Her first present was a backpack doll house courtesy of my Aunt Betsy and her granddaughter (who knows hospital life all too well) and her second present was Sadness (her favorite character from the movie inside out) courtesy of one of our favorite nurses, Kate. Hopefully we bust out of the hospital soon, because she won't have any other presents to get come Christmas
Tuesday, November 21, 2017
G tube here we come
Here we go, prepping for another surgery, another hospital stay and another chance to showcase Lucy's strength. Surgery is officially scheduled for next Monday, the 27th. Deep breath. These past couple weeks we have been meeting with some new doctors and discussing plans for this surgery.
First we met with Dr. Smith (GI doctor) to discuss her history, talk about her feeding schedule and what issues we had with her stomach during the last hospital stay. The evaluation was minimally invasive as the most he did was take a look at her belly and listen. We discussed GJ tube versus G tube and the complications that come along with surgery. Then ended the evaluation with a follow up phone call after some discussions with cardiology.
Two days later we had our pre-op appointment with Dr. Chokshi (pediatric surgeon). He came recommended and at first meeting, I could tell I was going to like him. Megan (RN for general surgery) was a familiar face from back in 2014 when we spent two weeks in the step down unit. Their demeanor through our appointment put me at ease as we discussed our surgery options. The big theme I was getting from both appointments is that nobody wants Lucy to have the GJ tube. It comes with many complications post-op and can extend surgery time. But there are also reservations regarding the G tube: her throwing up, she hasn't been fed to her stomach since May and her stomach's motility. So, what happens? We go for an immediate upper GI. Radiology was able to squeeze us in immediately. Thanks a bunch, wink, wink. Remember last post when I said the ENT evaluation was bad. THAT. WAS. NOTHING!
The upper GI consists of drinking about 2 ounces of Barium, then filming how the liquid moves through the digestive tract. From her swallow study, I knew she wouldn't be able to drink it (because of the taste she immediately threw it up), which meant we would have to place an NG tube to get the barium to her stomach. She flailed and screamed and cried her eyes out and it was really hard to watch her go through it. I try hard to never cry while it's happening, to talk her through it, stay calm and reassure her that it will only be for a little bit. I've tried to adopt a saying 'we can do anything for just a little bit'. I am not sure if it has helped, but I will say, Lucy always ALWAYS bounces back so quickly. Most of the time I do too, honestly most of my tears come after the fact, talking about it (or recapping here).
The results of the upper GI were good. They showed her stomach emptied rather quickly and gave Dr. Chokshi some data to discuss options. Last Thursday Megan called to tell me everyone wanted to do a NG feeding trial to see what her stomach can handle.
Our first option was a week trial with the NG tube. Absolutely not. If she was not able to handle it and threw up most of what we fed her, that would leave us with a week without food heading into surgery.
Next option, admit to the hospital on Friday (11/17), pull NJ, place NG and trial feeds over the weekend. If feeds go well, go home with NG tube. If they do not, place the NJ on Monday and go home. Absolutely not. Placing the NJ tube was painful. Her current NJ tube took three hours to place. When we pull the NJ tube, we are pulling it for the last time.
Last option, admit this Friday (11/24), NG trial over the weekend and go to surgery Monday morning. I asked if we could do this at home. If she was not able to handle it, I would bring her in immediately for admit so we could get her fluids before surgery. They obliged.
I am thankful to have a voice for Lucy and that our doctors take to heart what we talk about.
This Thursday we will also be thankful for all we have overcome and Friday will start our next journey. Friday morning we will give Lucy's morning meds, then pull her NJ tube. We'll give her the day to enjoy and then early evening we will place the NG tube and start feeds overnight. I am starting with a lower volume to test her and then will slowly increase over the course of the weekend. Wish us luck!
Our specific prayer requests are
~Our home trial works and we do not have to be admitted early for IV fluids.
~The trial determines that we can move forward with the less risky G tube.
~Surgery and recovery is as close to standard as possible.
~An open bed in the PSHU, because of Lucy's anxiety, I'd like her to be in a familiar place. If no beds are available, it would mean a bed in the PICU (i.e. new faces)
First we met with Dr. Smith (GI doctor) to discuss her history, talk about her feeding schedule and what issues we had with her stomach during the last hospital stay. The evaluation was minimally invasive as the most he did was take a look at her belly and listen. We discussed GJ tube versus G tube and the complications that come along with surgery. Then ended the evaluation with a follow up phone call after some discussions with cardiology.
Two days later we had our pre-op appointment with Dr. Chokshi (pediatric surgeon). He came recommended and at first meeting, I could tell I was going to like him. Megan (RN for general surgery) was a familiar face from back in 2014 when we spent two weeks in the step down unit. Their demeanor through our appointment put me at ease as we discussed our surgery options. The big theme I was getting from both appointments is that nobody wants Lucy to have the GJ tube. It comes with many complications post-op and can extend surgery time. But there are also reservations regarding the G tube: her throwing up, she hasn't been fed to her stomach since May and her stomach's motility. So, what happens? We go for an immediate upper GI. Radiology was able to squeeze us in immediately. Thanks a bunch, wink, wink. Remember last post when I said the ENT evaluation was bad. THAT. WAS. NOTHING!
The upper GI consists of drinking about 2 ounces of Barium, then filming how the liquid moves through the digestive tract. From her swallow study, I knew she wouldn't be able to drink it (because of the taste she immediately threw it up), which meant we would have to place an NG tube to get the barium to her stomach. She flailed and screamed and cried her eyes out and it was really hard to watch her go through it. I try hard to never cry while it's happening, to talk her through it, stay calm and reassure her that it will only be for a little bit. I've tried to adopt a saying 'we can do anything for just a little bit'. I am not sure if it has helped, but I will say, Lucy always ALWAYS bounces back so quickly. Most of the time I do too, honestly most of my tears come after the fact, talking about it (or recapping here).
The results of the upper GI were good. They showed her stomach emptied rather quickly and gave Dr. Chokshi some data to discuss options. Last Thursday Megan called to tell me everyone wanted to do a NG feeding trial to see what her stomach can handle.
Our first option was a week trial with the NG tube. Absolutely not. If she was not able to handle it and threw up most of what we fed her, that would leave us with a week without food heading into surgery.
Next option, admit to the hospital on Friday (11/17), pull NJ, place NG and trial feeds over the weekend. If feeds go well, go home with NG tube. If they do not, place the NJ on Monday and go home. Absolutely not. Placing the NJ tube was painful. Her current NJ tube took three hours to place. When we pull the NJ tube, we are pulling it for the last time.
Last option, admit this Friday (11/24), NG trial over the weekend and go to surgery Monday morning. I asked if we could do this at home. If she was not able to handle it, I would bring her in immediately for admit so we could get her fluids before surgery. They obliged.
I am thankful to have a voice for Lucy and that our doctors take to heart what we talk about.
This Thursday we will also be thankful for all we have overcome and Friday will start our next journey. Friday morning we will give Lucy's morning meds, then pull her NJ tube. We'll give her the day to enjoy and then early evening we will place the NG tube and start feeds overnight. I am starting with a lower volume to test her and then will slowly increase over the course of the weekend. Wish us luck!
Our specific prayer requests are
~Our home trial works and we do not have to be admitted early for IV fluids.
~The trial determines that we can move forward with the less risky G tube.
~Surgery and recovery is as close to standard as possible.
~An open bed in the PSHU, because of Lucy's anxiety, I'd like her to be in a familiar place. If no beds are available, it would mean a bed in the PICU (i.e. new faces)
Friday, November 3, 2017
Never have I ever
'Never Have I Ever' is a drinking game I played in college. The gist is you follow up that phrase with an action and if you have done the action you have to drink.
Never have I ever gotten lost ..........drink
Never have I ever been arrested.......drink
Never have I ever thrown up in public.....drink
You get the idea. As a mom, I have said a bunch of time, I never thought. If I took this game from my college days and changed it around a bit, I would be face down on the bathroom floor.
Never did I ever think I would be so familiar with the hospital...........................drink
Never did I ever think I would l to worry about my child's fat intake.................drink
Never did I ever think I would potty train my kids at the same time..................drink
Never did I ever think I would have a medication schedule..............................drink
Never did I ever think I would carry around a medical resume.........................drink
Never did I ever think after all the hard work a G-tube would be needed........drink
Here's the thing about CHD, it impacts so much more than just the heart. And sometimes that isn't always discussed when you get the diagnosis. I mean, I get why. Not all kids are the same. Some have their surgeries and encounter minimal other issues. But kids like Lucy, that is just not the case. A perfect example would be our latest hospital stay. In those 100 days we saw at least seven specialties.
Cardiology
Respiratory
Nephrology
Infectious disease
Gastroenterology
ENT
Psychiatry
Radiology
Last week we went back to the hospital for a swallow study, ENT evaluation and her bridle change.
The swallow study went really well. It was so fun to watch Lucy interact with Jen. She was goofy, talkative and showed no signs of being scared. Quite a difference from our hospital meetings. Lucy got up in the special chair, next to the big camera and sampled the food that Jen "made". For the study, a dye has to be put on all the food so it can be tracked through chewing and swallowing. We sampled thin, nectar, puree and solid food. She passed on everything as long as the volume was small. We got approved to give nectar liquids in amounts of 2.5 to 5 mL at a time. We are not on a liquid (amount) restriction since her diuretics are so high, but we are trying not to go overboard. We aim for four to six ounces by mouth a day. The ENT evaluation was a little more traumatic and Dr. Sherman had to put the scope up her nose to view her vocal cords. She sat in my lap and I held her like a straight jacket, while the nurse held her head and Dr. Sherman placed the scope. She screamed, maybe the loudest I have heard in awhile. Lucy's vocal cords have healed a bit but there is still some compensation from the left side to close them all the way. At this time, no intervention was needed, but he stressed that the NJ tube is impacting all of it. And then he said those dreaded words: G tube.
Now, I'm not scared of the actual g-tube. I have heard amazing things about kids getting them. I think it's that is another surgery and another hospital stay. But honestly the hardest part is that we worked SO SO HARD to get her eating, that to be back here talking about g-tubes is just another punch in the gut. I was hopeful we would have some time to work on her eating before definitively deciding about the surgery, but my gut was telling me get prepared.
Fast forward to yesterday and our cardiology appointment. We had a blood draw for labs and it only took me two months and five trips to remember the lidocaine for arm. It didn't help much, so maybe it's not that big of deal that I haven't remembered. Then an EKG and vitals. Last we sat down with Dr. Husayni to discuss what has been happening over the last month. Since our last appointment we have seen her physical strength increase along with her energy level, but her oral intake has decrease tremendously. We are lucky that we have not seen her weight tank as that would mean an admittance. And he finally said it, we need a GI evaluation so we can get an idea of what her digestive system is doing. I asked what the probability of the G-tube was and his response was, she needs it. My eyes get watery as I start to dread another hospital stay.
Me: How long is the average stay
Dr. Husayni: about 2-3 days
Me: So Lucy at least a week
Dr. Husayni: You are veteran, you know how it goes
Me: When?
Dr. Husayni: We should do it this year.
And there you have it. 2017 can officially suck it!!!! We will start with GI evaluation, then look to schedule the surgery.
While this news definitely overshadowed the good that has happened this month. There is still good! We have decreased some medications and stopped another one. We have adjusted her feeding times. Hooking her up at 4 pm was not working out because Lucy can't quite grasp that the feeding pole has to come with her when she gets up to move. We started feeding her at nap time so that we could delay the night feed until she went to bed. The other change we made was moving up her night dose of diuretics to 4 pm, so that there were no more accidents and I don't have to wake her up to change her diaper 3 times overnight. BUT what I love is that Lucy loves Dr. Husayni. While we were getting vitals he walked by and she got so excited she made him come in for a hug. Then she helped him listen to her. When we were finished, she asked if he would walk us out. I hope this sweet relationship grows stronger as he helps to guide her through this journey.
Never have I ever gotten lost ..........drink
Never have I ever been arrested.......drink
Never have I ever thrown up in public.....drink
You get the idea. As a mom, I have said a bunch of time, I never thought. If I took this game from my college days and changed it around a bit, I would be face down on the bathroom floor.
Never did I ever think I would be so familiar with the hospital...........................drink
Never did I ever think I would l to worry about my child's fat intake.................drink
Never did I ever think I would potty train my kids at the same time..................drink
Never did I ever think I would have a medication schedule..............................drink
Never did I ever think I would carry around a medical resume.........................drink
Never did I ever think after all the hard work a G-tube would be needed........drink
Here's the thing about CHD, it impacts so much more than just the heart. And sometimes that isn't always discussed when you get the diagnosis. I mean, I get why. Not all kids are the same. Some have their surgeries and encounter minimal other issues. But kids like Lucy, that is just not the case. A perfect example would be our latest hospital stay. In those 100 days we saw at least seven specialties.
Cardiology
Respiratory
Nephrology
Infectious disease
Gastroenterology
ENT
Psychiatry
Radiology
Last week we went back to the hospital for a swallow study, ENT evaluation and her bridle change.
The swallow study went really well. It was so fun to watch Lucy interact with Jen. She was goofy, talkative and showed no signs of being scared. Quite a difference from our hospital meetings. Lucy got up in the special chair, next to the big camera and sampled the food that Jen "made". For the study, a dye has to be put on all the food so it can be tracked through chewing and swallowing. We sampled thin, nectar, puree and solid food. She passed on everything as long as the volume was small. We got approved to give nectar liquids in amounts of 2.5 to 5 mL at a time. We are not on a liquid (amount) restriction since her diuretics are so high, but we are trying not to go overboard. We aim for four to six ounces by mouth a day. The ENT evaluation was a little more traumatic and Dr. Sherman had to put the scope up her nose to view her vocal cords. She sat in my lap and I held her like a straight jacket, while the nurse held her head and Dr. Sherman placed the scope. She screamed, maybe the loudest I have heard in awhile. Lucy's vocal cords have healed a bit but there is still some compensation from the left side to close them all the way. At this time, no intervention was needed, but he stressed that the NJ tube is impacting all of it. And then he said those dreaded words: G tube.
Now, I'm not scared of the actual g-tube. I have heard amazing things about kids getting them. I think it's that is another surgery and another hospital stay. But honestly the hardest part is that we worked SO SO HARD to get her eating, that to be back here talking about g-tubes is just another punch in the gut. I was hopeful we would have some time to work on her eating before definitively deciding about the surgery, but my gut was telling me get prepared.
Fast forward to yesterday and our cardiology appointment. We had a blood draw for labs and it only took me two months and five trips to remember the lidocaine for arm. It didn't help much, so maybe it's not that big of deal that I haven't remembered. Then an EKG and vitals. Last we sat down with Dr. Husayni to discuss what has been happening over the last month. Since our last appointment we have seen her physical strength increase along with her energy level, but her oral intake has decrease tremendously. We are lucky that we have not seen her weight tank as that would mean an admittance. And he finally said it, we need a GI evaluation so we can get an idea of what her digestive system is doing. I asked what the probability of the G-tube was and his response was, she needs it. My eyes get watery as I start to dread another hospital stay.
Me: How long is the average stay
Dr. Husayni: about 2-3 days
Me: So Lucy at least a week
Dr. Husayni: You are veteran, you know how it goes
Me: When?
Dr. Husayni: We should do it this year.
And there you have it. 2017 can officially suck it!!!! We will start with GI evaluation, then look to schedule the surgery.
While this news definitely overshadowed the good that has happened this month. There is still good! We have decreased some medications and stopped another one. We have adjusted her feeding times. Hooking her up at 4 pm was not working out because Lucy can't quite grasp that the feeding pole has to come with her when she gets up to move. We started feeding her at nap time so that we could delay the night feed until she went to bed. The other change we made was moving up her night dose of diuretics to 4 pm, so that there were no more accidents and I don't have to wake her up to change her diaper 3 times overnight. BUT what I love is that Lucy loves Dr. Husayni. While we were getting vitals he walked by and she got so excited she made him come in for a hug. Then she helped him listen to her. When we were finished, she asked if he would walk us out. I hope this sweet relationship grows stronger as he helps to guide her through this journey.
My biggest fear with this surgery is how it will impact Lucy's mental state. She still has anxiety when I leave and many times at night she asks "you're not gonna leave". We try really hard to ease her fears and to explain everything that is happening but sometimes that is just not enough. While she is smart enough to understand she still get scared. I truly hope I will be able to say, this was the easiest one yet.
Sunday, October 8, 2017
Eating, it's always the eating
Where do I start? HOME, HOME is amazing. I actually went back and read my blog from our first homecoming (Lucy was six pounds at five months old, that seems crazy) and some of the feelings are the same. New medications, oxygen and feeding pump were a big change from when we came to the hospital and I definitely was feeling a bit overwhelmed. But just like last time, a day in and I felt a lot better. Our wild card: Connor. Luckily, my parents kept him at their house for our first week home. It really allowed us to focus on Lucy and get settled. The first few days Lucy slept a lot and she needed it. She was able to be awake for about two hours at a time and then would crash. She would fall asleep wherever, family room floor, sitting up on the office couch or her fabulous, comfortable BIG GIRL bed.
Her extended napping allowed me to re-organize the medication cabinet and unpack.
our schedule looked like this:
7 am - 8 medications
7:15 - weigh in and breakfast
9 am - napping
12 pm - lunch
1 pm - 3 medications
2 pm - napping
4 pm - 1 medication and start feeds
6 pm - 4 medications
6:30 pm - bed time
7 pm - 8 medications
8 pm - add formula to feeds
11 pm - 1 medication
12 am - add formula
4 am - shut off feeding pump and flush NJ tube
The one thing I did not anticipate (although I probably should have) was the effect of the diuretics. The first two nights, at least once, Lucy peed through the diaper. Let me tell you, there is a fine line you walk, allowing her to sleep without interruption and changing her diaper before it leaks through to her sheets. When that happens, it's a big production. Getting her out of bed, changing the sheets, you know the drill. After three times of missing the window, I came up with a new plan. Her bed is now an arsenal of protection against a leaky diaper. First fitted sheet, then mattress protector, next another fitted sheet, and last a thick blanket. This leaves me three leaks before I have to completely strip the bed. We are on to week five and have a pretty good night time routine. She gets her last diuretic at 7 pm. If she goes right to bed, then we diaper change at 8:30, 11 pm and 3 am. If she stays up until 8 pm, we get a clean diaper on then a change at 10 pm and 3 am. 3 am is when her feeds usually error out, so I am getting up anyway. Error out sounds like the wrong thing to say, but what I have found with the feeding pumps is they are not calibrated very well. She usually gets her total amount of formula (720 mL) in under the twelve hours and when the formula is gone, the pump will display a error message.
While I thought our biggest obstacle at home was going to be physical therapy, it appears that once again feeding issues will take the cake. But not in the way I thought. Lucy very much wants to eat and aside from thin liquids and fat our options are unlimited. (Did you get that joke?). Our fat free diet has us really restricted, but I have been able to get some variety into her diet. Purees are our best because they take the least amount of energy to consume. Our diet has been made up of soups, fruits, veggies, mashed potatoes and noodles. Her favorite, by far, sour cream, plain, in a bowl eating it with a spoon. Here is our hurdle, Lucy has thrown up at least once (but most times 2 or more) every single day since we have been home. Sometimes it happens immediately after she eats. Other times it's hours after a meal. However, it doesn't seem to phase her. She has thrown up and in the next breath asked for more food. I was hopeful that her want of eating would allow us to decrease her tube feeding quickly, but her throwing up does not really let us get a good picture of her caloric intake. Until we have a string of days without throw up, we will probably remain on twelve hour feeds. The good news is we are coming up on the end of our eight week fat free diet. I asked our cardiologist if we could remain on fat free formula so that we could increase her fat intake by mouth expand her variety of food. We got the green light, so we will be able to foods with 3 grams of fat per serving.
We started physical therapy through Easter Seals and our therapist is able to come to the house while Lucy is still on two liters of oxygen. We'll see her once a week, then when Lucy goes back to school, Laura would be able to come take her out of school for therapy and it would not be an extra trip. She is so ahead of where I thought she would be. She wasn't able to stand when we first came home but know, she is walking and WITHOUT her walker most of the time. Then we will just need to strengthen everything. In no time, she'll be jumping and running just like she was. Let's just hope when that time comes she is not still on her feeding tube. It has been slightly hard to explain to her that when she is getting feeds she cannot just get up and go. She has to make sure her pump comes with her. I have been trying to get her to use it as support for walking but it's quite awkward to do on carpet.
Lastly, our one month follow-up went very well. We ended up not changing the bridle on her NJ tube which was why it went so well. Her echo had no changes from her previous one. Clinically she looked good and her saturations were in the high 70's. Her last two INR's (test for warfarin) were both 2.0 (which is in range: 2.0-2.5), so we are able to now test every two weeks. We decreased one of her diuretics and also stopped another medication, which was nice because I was able to re-arrange her medication schedule so that she no longer is getting medication during nap time. We go back in another month and we will probably start talking about a swallow study and ENT consult. She has snagged Connor's sippy cup a few times and even drank her bath water, so I think we are at the point where we need to give her another try at thin liquids.
We continue to be blessed by all of you who keep us in your prayers for continued healing, THANK YOU!
Here she is taking her first few steps!
Her extended napping allowed me to re-organize the medication cabinet and unpack.
7 am - 8 medications
7:15 - weigh in and breakfast
9 am - napping
12 pm - lunch
1 pm - 3 medications
2 pm - napping
4 pm - 1 medication and start feeds
6 pm - 4 medications
6:30 pm - bed time
7 pm - 8 medications
8 pm - add formula to feeds
11 pm - 1 medication
12 am - add formula
4 am - shut off feeding pump and flush NJ tube
The one thing I did not anticipate (although I probably should have) was the effect of the diuretics. The first two nights, at least once, Lucy peed through the diaper. Let me tell you, there is a fine line you walk, allowing her to sleep without interruption and changing her diaper before it leaks through to her sheets. When that happens, it's a big production. Getting her out of bed, changing the sheets, you know the drill. After three times of missing the window, I came up with a new plan. Her bed is now an arsenal of protection against a leaky diaper. First fitted sheet, then mattress protector, next another fitted sheet, and last a thick blanket. This leaves me three leaks before I have to completely strip the bed. We are on to week five and have a pretty good night time routine. She gets her last diuretic at 7 pm. If she goes right to bed, then we diaper change at 8:30, 11 pm and 3 am. If she stays up until 8 pm, we get a clean diaper on then a change at 10 pm and 3 am. 3 am is when her feeds usually error out, so I am getting up anyway. Error out sounds like the wrong thing to say, but what I have found with the feeding pumps is they are not calibrated very well. She usually gets her total amount of formula (720 mL) in under the twelve hours and when the formula is gone, the pump will display a error message.
While I thought our biggest obstacle at home was going to be physical therapy, it appears that once again feeding issues will take the cake. But not in the way I thought. Lucy very much wants to eat and aside from thin liquids and fat our options are unlimited. (Did you get that joke?). Our fat free diet has us really restricted, but I have been able to get some variety into her diet. Purees are our best because they take the least amount of energy to consume. Our diet has been made up of soups, fruits, veggies, mashed potatoes and noodles. Her favorite, by far, sour cream, plain, in a bowl eating it with a spoon. Here is our hurdle, Lucy has thrown up at least once (but most times 2 or more) every single day since we have been home. Sometimes it happens immediately after she eats. Other times it's hours after a meal. However, it doesn't seem to phase her. She has thrown up and in the next breath asked for more food. I was hopeful that her want of eating would allow us to decrease her tube feeding quickly, but her throwing up does not really let us get a good picture of her caloric intake. Until we have a string of days without throw up, we will probably remain on twelve hour feeds. The good news is we are coming up on the end of our eight week fat free diet. I asked our cardiologist if we could remain on fat free formula so that we could increase her fat intake by mouth expand her variety of food. We got the green light, so we will be able to foods with 3 grams of fat per serving.
We started physical therapy through Easter Seals and our therapist is able to come to the house while Lucy is still on two liters of oxygen. We'll see her once a week, then when Lucy goes back to school, Laura would be able to come take her out of school for therapy and it would not be an extra trip. She is so ahead of where I thought she would be. She wasn't able to stand when we first came home but know, she is walking and WITHOUT her walker most of the time. Then we will just need to strengthen everything. In no time, she'll be jumping and running just like she was. Let's just hope when that time comes she is not still on her feeding tube. It has been slightly hard to explain to her that when she is getting feeds she cannot just get up and go. She has to make sure her pump comes with her. I have been trying to get her to use it as support for walking but it's quite awkward to do on carpet.
Lastly, our one month follow-up went very well. We ended up not changing the bridle on her NJ tube which was why it went so well. Her echo had no changes from her previous one. Clinically she looked good and her saturations were in the high 70's. Her last two INR's (test for warfarin) were both 2.0 (which is in range: 2.0-2.5), so we are able to now test every two weeks. We decreased one of her diuretics and also stopped another medication, which was nice because I was able to re-arrange her medication schedule so that she no longer is getting medication during nap time. We go back in another month and we will probably start talking about a swallow study and ENT consult. She has snagged Connor's sippy cup a few times and even drank her bath water, so I think we are at the point where we need to give her another try at thin liquids.
We continue to be blessed by all of you who keep us in your prayers for continued healing, THANK YOU!
Here she is taking her first few steps!
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