I will preface this post by stating something that's already well known... Gracie is a trooper. She continues to blow through IVs and is currently on number eight. She did "well" today (always a qualified statement), all things considered.
That being said, it was a very difficult day that involved numerous phone calls to doctors, case managers, the surgeon's office and the surgeon himself. There were a lot of tears... tears of anger, sadness, frustration, irritation and more anger... you name a reason to cry and I cried for it today. (It is quite possible that I had a lot of tears that needed crying, as I've not had a good, solid uninhibited sob in a while.) At the end of the day, I cried tears of relief, as, thankfully, we got surgery scheduled for tomorrow instead of next week or later. It's just so unfortunate that it took hard core advocating to get there.
I'll back up a bit. When Gracie was discharged on July 22, we (i.e. John, the GI team, the attending physician and I) had not wanted Gracie discharged. We all felt as though she would end up back in the hospital before we could get surgery accomplished - - we just wanted to move forward with surgery... the sooner, the better. She had been cleared by everyone, but the surgeon did not want to do it that admission. We were told he was going on vacation... he was not... and it doesn't, at this point, matter why or how that piece of info was incorrectly communicated. Bottom line is we took her home, did some more surgery related soul searching, got it scheduled, she got sick again (everyone feels that would have happened in that amount of time regardless of where she was) and she missed her scheduled surgery date last Friday.
Because of the infection, surgery was cancelled. But, once her cultures were negative, we were told that the surgeon's office was working on getting Gracie on the schedule with the assumption that she'd be fully cleared. Since Friday, everyone (and I mean everyone, BUT the surgeon, whom we haven't yet seen this admission) had been saying that it was looking like Wednesday, yet at the same time, she never was officially on the schedule.
Cut to today... I called John at the hospital to find out if he'd heard anything. Not a word. It was agreed that he'd ask every single person who walked into the room until he got an answer. In the meantime, I called the surgeon's office directly. They informed me that Gracie wasn't on the schedule and I asked that they have the scheduler or surgeon call me directly. I needed an answer, not the runaround. Back at the hospital, John was informed that the scheduler was out sick. Minutes later the surgeon's office called me back and said that the schedule was really full this week and he (the surgeon) was trying to get her on for next week. She ended her little speech with, "Okay?" To which I said, "No... have the surgeon call me directly, please. We are not 'okay' with her sitting in the hospital waiting for surgery for at least another week."
In the meantime, in an effort to convince the surgeon that this needed to get accomplished sooner than later, I continued my telephone tirade by leaving messages for the GI doc, the Pulmonologist and the Case Manager on the PICU. I word-vomited on all their voicemails about the situation. I knew that they were on our side, but whether or not they'd have clout with the surgeon at this point was questionable. I asked the case manager to set-up a care conference. The pulmonologist ended up rounding on Gracie to check on her new trach (more on that below) and John told her what was going on. She said she'd go to the OR herself and talk to the surgeon. We don't know that she actually did. No sooner had she left Gracie's bedside did the surgeon call me to say that she was NOT having surgery this week. He went on to say that the schedule was full and that Gracie's case was not emergent enough to bump anyone else. He also said that there was no way that any of his Nurse Practitioners would have said that Wednesday was a possibility. He said that information never came from his office and that he was sorry we had been so terribly misinformed. At that point, my tears were free flowing and there was no way I could keep myself from sounding hysterical. I pleaded with him about the fact that she continues to blow through IVs, that we can't feed her through her G-tube or she'll start having another set of issues prior to surgery... not to mention the increased risk of infection just for sitting in the hospital... what did he expect us to do? She can't leave her room because she is in isolation, she is depressed and begging to go home... what are we supposed to do for her? He said to put in another central line to avoid the IV issue... I reminded him that Interventional Radiology would require another anesthesia - - wouldn't it be better to just put her under once? He literally raised his voice in frustration with the fact that we'd been given any sort of hope that this week was possible. He said that by calling me himself about this he was already going above and beyond what he does for most parents. I told him it doesn't matter what he does for others, I needed him to hear me about my child. He said he would try to add her to Monday's schedule, but that next week was already full as well.
By the time we got off the phone, I was sobbing, Preston (yes... all of this in front of Preston because no matter what I did, he followed me all through the house) was crying, too, and I had to explain to him that mommy was so very mad that she was crying and she was really sorry if he was scared. Later he told me, "I was so mad that you were so mad that I cry, too, Mama." So sweet, but I feel so guilty. I just couldn't hold it together, though, no matter how hard I tried. After I got off the phone with the surgeon, more hysterical calls to the John, my mom, the GI office and the case manager. About an hour later, the surgeon called me back, claimed to have moved mountains and said that he got an OR time for tomorrow (Wednesday) at 2:15pm. He said that he would be doing a lot of extra driving from one hospital to another to get it done... for which I am grateful, but not at all sorry. I have no idea what or who actually triggered him to get Gracie on the schedule ASAP, nor do I care. The point is, it's done and she doesn't have to sit and wait another week or more. I know he is a good man... I know he is an excellent surgeon. I'd like to think that once he had five minutes to really think about the situation, he just did the right thing.
I hate that I had to be a stalker today. I hate that I was hysterical, especially when trying to talk to doctors. I hate that it all came down to this, because up until this whole fiasco, this stay had been truly wonderful as far as care is concerned. In the end, the surgeon is doing the right thing - - the thing that considers the whole patient and the whole situation, not just the surgery itself. It's just so infuriating that it had to get to the point that it did. The wonderful case manager, Jo, reminded me that I was doing my job as Gracie's mama... that it wasn't as though I woke up today with the agenda to get under the surgeon's skin. She's right... my focus is my daughter and I only did what was in her best interest. Like me, she is sorry that it had to come down to some serious "pit-bulling," and yet I shouldn't apologize for it at all. I appreciate that reminder so much.
Please keep our sweet girl in your thoughts and/or prayers Wednesday as this surgery, while "routine," has no guarantee of being the end-all solution for Gracie. Furthermore, it is a 'gut revision' and, as such, does not have an easy recovery at all.
On another note, the resident and attending in the PICU did an excellent job getting all tests and procedures done in order to clear Gracie for that Wednesday target date. On Sunday she had her echocardiogram to check for any issues following the yeast infection in her blood. On Monday she had an abdominal ultrasound, a bronchoscopy, a CT of her lungs and an Opthalamolgic Exam which included dilation of her eyes. It was, needless to say, a very busy day. Her echo, ultrasound and CT came back negative as did the eye exam.
Unfortunately, the bronch showed that her tracheolmalacia has worsened and as a result, the pulmonologist changed her trach to a larger, longer temporary one and has ordered her a custom trach which we should receive next Monday. Essentially, Gracie's airway is so floppy, it was easily collapsing just below her old trach. In theory, this contributed to her inability to manage her secretions, her violent coughing jags, and her gagging. The longer trach will (or should) help keep everything open. So far, though, it hasn't made a difference... she is gagging more, actually, as she tries to adjust to the way it feels. Her secretions haven't yet lessened either. It's a "wait and see" game for now... they may have to adjust the trach again, but until she gets through surgery, there isn't any way of really knowing whether it has helped or if it needs some tweaking.
So many things going on... steps forward almost guarantee a step or two backward. Hopefully, over the next week, we gain more steps than we lose.
Tuesday, August 10, 2010
Friday, August 6, 2010
Foto Friday 2, vol. 16 - In between the heartache
** Update: Gracie's fevers have stabilized... low grade only. Her blood cultures are now negative and need to remain negative until Monday. At that point, they will do a full eye exam, liver workup and echo to make sure that there isn't any damage from the yeast infection. The pulmonologist also wants to do a Bronchoscopy and a Chest CT to rule a few things out. Provided all of these tests are negative, we could be looking at surgery by the end of next week. Also, I have had several discussions with the Infectious Disease doctor (whom I adore) about Gracie's history and she will be doing a full immunological workup once all of Gracie's labs and tests are negative. **
Foto Friday, in its traditional form, has been at a standstill for weeks now, though not because we haven't taken any pictures. In between the hospitalizations, and even during, we've tried to keep things as normal as possible for both of the kids, and therefore, the camera was still on hand to capture plenty of moments.
In the lobby of the hospital...
waiting to be admitted.
Gracie was so happy to be at the hospital because she thought she was going to therapy. No matter how many times I tried to explain that she wasn't going to "swallow work," she kept signing "eat" along with the names of her two therapists, Ally and Hema.
Hospital Stay #1 - Getting the PICC
June 15-June 19
While she wasn't entirely thrilled to be inpatient, Gracie thoroughly enjoyed some moments of her stay, especially those that included getting a bath, having her hair done and brushing her teeth. Her most favorite part, though, was the visit from her brother.
June 21 - The day before she was readmitted for Hospital Stay #2
It was obvious to us the day we took this that Gracie was not feeling well at all... she had just come home two days before. By the next day, she was in the PICU.
Hospitalization #2 June 22 - July 2
While we don't let Preston hang out for more than about five minutes, it's important for him to see Gracie and know where she is while she is inpatient. He understands she is sick and that she goes to the hospital to get medicine that she can't get at home and see all of her doctors every day.
Fourth of July
Gracie had only been home from the hospital (stay #2) for a day and a half. She was super tired and this two hours out for a walk and some time at one of the school playgrounds was all she tolerated. John took Preston out to see fireworks, but for the most part, it was a very quiet day spent at home. We did get some cute pics at the school, though, I must say!
Little Man loves himself some soccer!
Home from Hospitalization #3 July 16 - July 22
Though she still didn't look or sound all that great (fluid overloaded), Gracie still wanted to make Preston get on the floor with her. Every time they sit together she tries take him down.
So cute chillin' with Daddy
Pool time
No matter how hard I tried, Preston would not let me get his picture! I had to chase him around his little pool to get one - - he was cracking up the entire time! I took tons of pics that are only a portion of his little laughing face... and I love them all!
Finally, got him!
Little Miss got to sit in about an inch of water and splash a teeny bit - - that's all she could be trusted with! She wanted to splash and do a full "dive," which, because of the PICC, was out of the question.
Addison's 3rd Birthday Party
Preston had so much fun celebrating with "his best girl, Addie."
Gracie is signing, "ready" - - as in, "Ready for the bounce house NOW... stop taking my picture and help me get in there!" She signed bounce the moment she saw it in the backyard. She spent about an hour and a half total hanging out in there while all the kids bounced around her - - as always, she loved all the input it provided. (I, of course, was also in there, supervising!)
Foto Friday, in its traditional form, has been at a standstill for weeks now, though not because we haven't taken any pictures. In between the hospitalizations, and even during, we've tried to keep things as normal as possible for both of the kids, and therefore, the camera was still on hand to capture plenty of moments.
waiting to be admitted.
Gracie was so happy to be at the hospital because she thought she was going to therapy. No matter how many times I tried to explain that she wasn't going to "swallow work," she kept signing "eat" along with the names of her two therapists, Ally and Hema.June 15-June 19
While she wasn't entirely thrilled to be inpatient, Gracie thoroughly enjoyed some moments of her stay, especially those that included getting a bath, having her hair done and brushing her teeth. Her most favorite part, though, was the visit from her brother.
It was obvious to us the day we took this that Gracie was not feeling well at all... she had just come home two days before. By the next day, she was in the PICU.
While we don't let Preston hang out for more than about five minutes, it's important for him to see Gracie and know where she is while she is inpatient. He understands she is sick and that she goes to the hospital to get medicine that she can't get at home and see all of her doctors every day.Gracie had only been home from the hospital (stay #2) for a day and a half. She was super tired and this two hours out for a walk and some time at one of the school playgrounds was all she tolerated. John took Preston out to see fireworks, but for the most part, it was a very quiet day spent at home. We did get some cute pics at the school, though, I must say!
Though she still didn't look or sound all that great (fluid overloaded), Gracie still wanted to make Preston get on the floor with her. Every time they sit together she tries take him down.
No matter how hard I tried, Preston would not let me get his picture! I had to chase him around his little pool to get one - - he was cracking up the entire time! I took tons of pics that are only a portion of his little laughing face... and I love them all!
Little Miss got to sit in about an inch of water and splash a teeny bit - - that's all she could be trusted with! She wanted to splash and do a full "dive," which, because of the PICC, was out of the question.
Gracie is signing, "ready" - - as in, "Ready for the bounce house NOW... stop taking my picture and help me get in there!" She signed bounce the moment she saw it in the backyard. She spent about an hour and a half total hanging out in there while all the kids bounced around her - - as always, she loved all the input it provided. (I, of course, was also in there, supervising!)
Wednesday, August 4, 2010
In the PICU... AGAIN... line sepsis
Gracie was home exactly eleven days this time. By Monday evening, she had a fever that, despite Tylenol, continued to move in the wrong direction. A spike to 104.6 at 8:00pm earned her a trip to the ER. Within three hours of our arrival, she was spiking to 105.3 and was admitted back to CHOC. At 4am, she was 106 and completely out of her mind. It was terrifying. That fever, coupled with low blood pressure and increased work of breathing earned her a bed in the PICU.
Last night, we learned that her PICC line was positive for yeast. Here's the medical lesson of the day in layman's terms (for those of you who don't already know): We all have yeast active in our respiratory system. However, we also all have bacteria in our systems that keep that yeast from being problematic. When you are on antibiotics, the good bacteria gets killed off, thus leaving you susceptible to a yeast infection. Gracie ended up with yeast in her line... which was not surprising to the Infectious Disease doctor given her history and her baseline respiratory labs. But, since she's been on BIG GUN antibiotics for weeks and weeks - - actually months and months - - all of her good bacteria are gone and her system had no way at all to fight that yeast. She didn't stand a chance with this infection. (The fact that Gracie has all kinds of respiratory flora when she is not acutely sick was always a concern for us with respect to having a central line placed. She is trached - - her secretions are tenacious and actively coughed out - - she is just at a higher risk for infection.)
As a result of the yeast infection, her PICC line was pulled today. Additionally, her blood pressure never responded to the fluids given on Monday night, so on Tuesday morning, they started her on Dopamine to maintain her blood pressure. She continues to fight fevers, her respirations are high most of the time, she has an active (albeit small) bleed in her stomach that is starting to affect her hemoglobin levels. She looks like a pin cushion due to all the peripheral draws that have been required to get labs. She now has an IV in each foot (so she can have her hands free) and she has more labs to come in the next several days in order to know how the infection is responding to the anti-fungal medication. Once those numbers look good, she will have a full eye exam, liver work-up and echo to confirm that the yeast didn't cause any damage or adhere to her pacemaker. Still so much to go through... and once she gets over this hurdle, there is another set waiting for her...
Gracie is very sick... very. Despite our experience with CHOC during her last admission (they've been wonderful so far this time), we had, after thoughtful consideration, scheduled surgery for this Friday. That has been cancelled, obviously. She hasn't been well since the day that PICC went in. And in looking at the bigger picture, she hasn't been well without antibiotics for more than fourteen days since January. Getting the PICC to give TPN was a huge step to "save" her... to keep her from starving. Even with the TPN and full gut rest, she is miserable from a GI standpoint. Receiving full nutrition and proper hydration made her gain weight, yes, but her body isn't handling that nutrition and hydration well at all. Her trach and lung health are constantly compromised. She gags and retches just trying to manage her saliva and we all know how uncomfortable gagging and retching is... imagine doing it all the time? With all of this, we are left wondering what will happen now that the line is out, wondering whether the surgery will really make that big of a difference since it won't solve so many of her other GI issues, wondering when enough is enough for our sweet girl.
She spent the better part of her first five years miserable. Yes, she has "great" days, but they are "great" days for her... and that means at some point, her day has hellish moments... even hours. It means that every day there is pain. She has now spent the last six months sick, fighting illnesses and constantly losing. We are walking the tightrope between the belief that she can be cured and the harsh reality that nothing is really helping. John and I have been asking ourselves tough questions with regard to Gracie's health and quality of life for years. Because of the last few months, we've had to try and answer those unfathomable questions... and the bottom line is that they don't yield any good, clear-cut or pain-free answers.
Last night, we learned that her PICC line was positive for yeast. Here's the medical lesson of the day in layman's terms (for those of you who don't already know): We all have yeast active in our respiratory system. However, we also all have bacteria in our systems that keep that yeast from being problematic. When you are on antibiotics, the good bacteria gets killed off, thus leaving you susceptible to a yeast infection. Gracie ended up with yeast in her line... which was not surprising to the Infectious Disease doctor given her history and her baseline respiratory labs. But, since she's been on BIG GUN antibiotics for weeks and weeks - - actually months and months - - all of her good bacteria are gone and her system had no way at all to fight that yeast. She didn't stand a chance with this infection. (The fact that Gracie has all kinds of respiratory flora when she is not acutely sick was always a concern for us with respect to having a central line placed. She is trached - - her secretions are tenacious and actively coughed out - - she is just at a higher risk for infection.)
As a result of the yeast infection, her PICC line was pulled today. Additionally, her blood pressure never responded to the fluids given on Monday night, so on Tuesday morning, they started her on Dopamine to maintain her blood pressure. She continues to fight fevers, her respirations are high most of the time, she has an active (albeit small) bleed in her stomach that is starting to affect her hemoglobin levels. She looks like a pin cushion due to all the peripheral draws that have been required to get labs. She now has an IV in each foot (so she can have her hands free) and she has more labs to come in the next several days in order to know how the infection is responding to the anti-fungal medication. Once those numbers look good, she will have a full eye exam, liver work-up and echo to confirm that the yeast didn't cause any damage or adhere to her pacemaker. Still so much to go through... and once she gets over this hurdle, there is another set waiting for her...
Gracie is very sick... very. Despite our experience with CHOC during her last admission (they've been wonderful so far this time), we had, after thoughtful consideration, scheduled surgery for this Friday. That has been cancelled, obviously. She hasn't been well since the day that PICC went in. And in looking at the bigger picture, she hasn't been well without antibiotics for more than fourteen days since January. Getting the PICC to give TPN was a huge step to "save" her... to keep her from starving. Even with the TPN and full gut rest, she is miserable from a GI standpoint. Receiving full nutrition and proper hydration made her gain weight, yes, but her body isn't handling that nutrition and hydration well at all. Her trach and lung health are constantly compromised. She gags and retches just trying to manage her saliva and we all know how uncomfortable gagging and retching is... imagine doing it all the time? With all of this, we are left wondering what will happen now that the line is out, wondering whether the surgery will really make that big of a difference since it won't solve so many of her other GI issues, wondering when enough is enough for our sweet girl.
She spent the better part of her first five years miserable. Yes, she has "great" days, but they are "great" days for her... and that means at some point, her day has hellish moments... even hours. It means that every day there is pain. She has now spent the last six months sick, fighting illnesses and constantly losing. We are walking the tightrope between the belief that she can be cured and the harsh reality that nothing is really helping. John and I have been asking ourselves tough questions with regard to Gracie's health and quality of life for years. Because of the last few months, we've had to try and answer those unfathomable questions... and the bottom line is that they don't yield any good, clear-cut or pain-free answers.
Monday, July 26, 2010
23 out of 41
Gracie has spent 23 out of the last 41 days in the hospital. She is home now, discharged last Thursday evening, following pneumonia and PICC line sepsis. She isn't 100% yet. She still doesn't sound great, she is looking "puffy" again, we are still concerned about fluid overload (on her heart and lungs), we are still concerned that the TPN, though providing proper nutrition & hydration, is causing increased secretions (simply because she is hydrated). Due to the lack of a functional swallow, the increased secretion (saliva) production translates into an increased difficulty in managing those secretions, which puts her at higher risk for aspiration.
As previously posted, there were mistakes made... lots of them... about which I won't delve into further in this forum, or at least not in this post. In any case, "concerns" (the hospital's fluffy code word for "complaints") have been filed and subsequently added-to three times, because after the initial "concerns" were filed (and posted here), the problems continued.
It goes without saying, our confidence in this Children's Hospital, regardless of its esteemed reputation, is gone. While we've had good outpatient care (with the exception of experiences with doctors with whom we didn't "click"), the inpatient care on Gracie's most recent stay was terrible. Mistakes, miscommunication, negligence - - so many things that required me to be more hyper-vigilant than ever before - - things that made us feel as though it was unsafe for us to step away even for a cup of coffee. It's astounding really, and if it hadn't happened to Gracie, I would find it difficult to believe that so many things could be done so wrong to one patient during one stay. Her safety was compromised several times; each day there were more mistakes and they were significant - - all the way through until I was handed an incorrect and incomplete discharge summary... one that left out the correct diagnosis and neglected to mention procedures performed while inpatient.
Understandably, our hearts and minds are incredibly heavy. These things shouldn't happen anywhere, but especially not at a reputable institution such as CHOC. While our sweet Gracie sits in the hospital, it shouldn't be required that we advocate for every single aspect of her care until we are blue in the face. It doesn't make sense that, as John and I pass each other for five minutes during our "changing of the guard," we communicate more effectively regarding her status and care (while also chasing a three year-old) than the doctors and nurses do during rounds or their own shift change. We shouldn't have to stand watch over nurses, residents and attendings to keep everyone on track. And while we'd never leave her unattended for any length of time, we shouldn't feel as though we can't use the restroom or get a breath of fresh air for a moment because she won't be well monitored. It was assumed we were there every minute of every day... and we were... not just because that's the choice we make as her parents, but because that's the choice we were required to make to ensure she was properly cared for.
The stress level is inexplicable. I can't really sleep, but when I do, I am literally thinking about all that is going on with Gracie. We have so many medical decisions to make, amongst many other things. A constant pulsating headache sits behind my eyes and my skin is completely riddled in breakouts from the stress. Gracie's second surgical consultation is tomorrow - - for a surgery she needs to have, and, yet, a surgery we are terrified for her to have, not just because there are no guarantees that it will work, but because we have no confidence and trust in the hospital who will "care" for her through recovery. We have private insurance that will allow us to go anywhere we choose, but it's not that simple. We certainly can't afford the copays if we choose another hospital outside of Gracie's secondary insurance network - - or out of the county. And, even if we find a way to make that work, her team of specialists who are finally getting to know her will not have privileges at another hospital. We feel trapped and helpless, we lack confidence and, as a result, we are scared.
As previously posted, there were mistakes made... lots of them... about which I won't delve into further in this forum, or at least not in this post. In any case, "concerns" (the hospital's fluffy code word for "complaints") have been filed and subsequently added-to three times, because after the initial "concerns" were filed (and posted here), the problems continued.
It goes without saying, our confidence in this Children's Hospital, regardless of its esteemed reputation, is gone. While we've had good outpatient care (with the exception of experiences with doctors with whom we didn't "click"), the inpatient care on Gracie's most recent stay was terrible. Mistakes, miscommunication, negligence - - so many things that required me to be more hyper-vigilant than ever before - - things that made us feel as though it was unsafe for us to step away even for a cup of coffee. It's astounding really, and if it hadn't happened to Gracie, I would find it difficult to believe that so many things could be done so wrong to one patient during one stay. Her safety was compromised several times; each day there were more mistakes and they were significant - - all the way through until I was handed an incorrect and incomplete discharge summary... one that left out the correct diagnosis and neglected to mention procedures performed while inpatient.
Understandably, our hearts and minds are incredibly heavy. These things shouldn't happen anywhere, but especially not at a reputable institution such as CHOC. While our sweet Gracie sits in the hospital, it shouldn't be required that we advocate for every single aspect of her care until we are blue in the face. It doesn't make sense that, as John and I pass each other for five minutes during our "changing of the guard," we communicate more effectively regarding her status and care (while also chasing a three year-old) than the doctors and nurses do during rounds or their own shift change. We shouldn't have to stand watch over nurses, residents and attendings to keep everyone on track. And while we'd never leave her unattended for any length of time, we shouldn't feel as though we can't use the restroom or get a breath of fresh air for a moment because she won't be well monitored. It was assumed we were there every minute of every day... and we were... not just because that's the choice we make as her parents, but because that's the choice we were required to make to ensure she was properly cared for.
The stress level is inexplicable. I can't really sleep, but when I do, I am literally thinking about all that is going on with Gracie. We have so many medical decisions to make, amongst many other things. A constant pulsating headache sits behind my eyes and my skin is completely riddled in breakouts from the stress. Gracie's second surgical consultation is tomorrow - - for a surgery she needs to have, and, yet, a surgery we are terrified for her to have, not just because there are no guarantees that it will work, but because we have no confidence and trust in the hospital who will "care" for her through recovery. We have private insurance that will allow us to go anywhere we choose, but it's not that simple. We certainly can't afford the copays if we choose another hospital outside of Gracie's secondary insurance network - - or out of the county. And, even if we find a way to make that work, her team of specialists who are finally getting to know her will not have privileges at another hospital. We feel trapped and helpless, we lack confidence and, as a result, we are scared.
Thursday, July 22, 2010
This break from hospital posts brought to you by Preston's words
I decided that a break in the hospital drama posts was necessary and have opted, instead, to share (and make sure I remember) some of the fabulous things that Preston has said lately.
June 3, 2010
He had to have blood drawn for allergy testing. He shed just one tear and informed everyone in the office that he "was super brave like Gracie."
June 25, 2010
Preston to John... "Daddy, I have good news and bad news."
John asked, "What's the good news?"
He replied, "Boobies!"
With a straight face (though I am sure he was beaming with pride inside) John then asked, "What's the bad news?"
He responded with "I Pooped."
There is no question... he's John's son!!
July 10, 2010
It's official. Preston has entered some realm of manhood... he has been peeing all over the backyard (despite my protests) AND he opened a jar of salsa for me! Shocked when I heard the lid to the salsa jar pop, I said, "Thank you, Bubba! You're very strong!" He says while grunting and showing his muscles, "Yes, Mama. I am super strong like Daddy and Papa. I eat my blasters."
("Blasters" are vegetables and fruit. Toy Story inspired, "blasters" make you grow big and strong so you can go "to infinity and beyond!" At dinner, we have a little contest to see who can eat the most blasters... whoever wins will be the strongest for the night! Winning and being the strongest are important to him... and vegetable consumption is important for us, so it's a perfect way to motivate him!)
July 20, 2010
John took Preston to the Discovery Science Museum where there currently is a "Grossology" exhibit. One of the interactive displays is a "jungle gym" where kids can climb up the esophagus, through the stomach and slide out the rectum! After that, John and I did a shift change at the hospital and I took our boy home.
In the car, when I asked him what he did at the museum, he said, "I see the inside of a tummy ache like Gracie's."
That boy is somethin' else.
July 20, 2010
Home with Preston overnight for the first time since Friday... he climbs on my lap and says, "Mama, I have something tell you: I miss Gracie. I sad 'bout it all the time."
Sigh. My nose tingled as I blinked back tears.
July 21, 2010
He informed John: "I am a genius."
He also indicated he wanted "to go in a rectum again."
And that just sounds gross, but makes me laugh nonetheless.
June 3, 2010
He had to have blood drawn for allergy testing. He shed just one tear and informed everyone in the office that he "was super brave like Gracie."
June 25, 2010
Preston to John... "Daddy, I have good news and bad news."
John asked, "What's the good news?"
He replied, "Boobies!"
With a straight face (though I am sure he was beaming with pride inside) John then asked, "What's the bad news?"
He responded with "I Pooped."
There is no question... he's John's son!!
July 10, 2010
It's official. Preston has entered some realm of manhood... he has been peeing all over the backyard (despite my protests) AND he opened a jar of salsa for me! Shocked when I heard the lid to the salsa jar pop, I said, "Thank you, Bubba! You're very strong!" He says while grunting and showing his muscles, "Yes, Mama. I am super strong like Daddy and Papa. I eat my blasters."
("Blasters" are vegetables and fruit. Toy Story inspired, "blasters" make you grow big and strong so you can go "to infinity and beyond!" At dinner, we have a little contest to see who can eat the most blasters... whoever wins will be the strongest for the night! Winning and being the strongest are important to him... and vegetable consumption is important for us, so it's a perfect way to motivate him!)
July 20, 2010
John took Preston to the Discovery Science Museum where there currently is a "Grossology" exhibit. One of the interactive displays is a "jungle gym" where kids can climb up the esophagus, through the stomach and slide out the rectum! After that, John and I did a shift change at the hospital and I took our boy home.
In the car, when I asked him what he did at the museum, he said, "I see the inside of a tummy ache like Gracie's."
That boy is somethin' else.
July 20, 2010
Home with Preston overnight for the first time since Friday... he climbs on my lap and says, "Mama, I have something tell you: I miss Gracie. I sad 'bout it all the time."
Sigh. My nose tingled as I blinked back tears.
July 21, 2010
He informed John: "I am a genius."
He also indicated he wanted "to go in a rectum again."
And that just sounds gross, but makes me laugh nonetheless.
Sunday, July 18, 2010
Frustrated, but out of ICU
So... the good news is that Gracie is on the mend and was moved out of ICU today.
Thankfully, that alone gave me enough fuel to calmly and rationally, but FIRMLY, deal with the rest of the day. I am beyond frustrated with what unfolded today regarding communication within the team of doctors, the team's communication with me and John, communication between nurses, communication and follow-through with the lab, and I think, worst of all, the physicians' attention to details.
On Friday we were told by two different docs that Gracie's chest xray looked great (which didn't make sense to us given her symptoms... I know my daughter), but if the film looked "great," then it looked great. Because it looked so great per the ER doc and the ICU attending, I asked a lot of questions once the attending came in to see us in the PICU. I explained her symptoms - - shortness of breath, coarse lung sounds, general fatigue, bloated appearance, more labored inspirations - - and I pointedly asked what, if not her lungs and/or heart, would cause all of these symptoms? He explained that the infection could have been brewing for some time and that those things could likely be caused by an infection. I then asked about breathing treatments... we had been giving her treatments around the clock but had not noticed a marked difference... and he said that it wouldn't have made a difference since it wasn't a lung issue.
This morning, I talked to the same doctor when he came in to discuss her improved status. I expressed that, while doing much better, she is still breathing fairly rapidly and her heart rate is still in the higher range of her pacemaker. He again suggested that the infection was the culprit, but that we could certainly do another chest xray to make sure that she hadn't developed a bit of pneumonia.
Following the xray, the on-call Cardiologist came in and said that her heart still looks enlarged and her lungs are wet, but better than on Friday. WHAT?! Needless to say, this started a whole line of questioning from me. I explained what we'd been told on multiple occasions by the other doctors and was not happy that this diagnosis had not been correctly interpreted by them. The cardiologist's suspicion was that the doctors had looked at her discharge xray from July 2nd and the xray from Friday, compared them, but then mixed up which was which when drawing their conclusions. I don't get how that can happen... there are also the written notes from the radiologist. How two doctors miss that is beyond me, unless one took the word of the other and never double checked. I talked to the cardiologist about all of my concerns... the same ones I expressed to the other doctor on Friday... and he felt my assessment of Gracie was right on.
Next, the Infectious Diseases Doctor came in and said that the line infection is definitely improving and, as far as bacterias go, Gracie's is the best case scenario. She described the bacteria as "unimpressive" and that it just needs to be treated, which we are. She also said that she is far more concerned about the pneumonia. THIS is what I thought was wrong when I brought her in... and this is what was "ruled out" on Friday by the ER and ICU doctors. WHY are we now getting an entirely different story about her lungs?! UGH. I explained all my frustrations to her, too, because anyone who walked through the door was going to hear about it. I may not be a doctor, but I play one in real life.
Thankfully, Gracie has been properly covered all along (for all the issues) with the antibiotics that the Infectious Diseases doctor prescribed. That's because she knew the whole picture... the line infection is real, but so is the lung/fluid issue. The consensus (between those who actually know what they are talking about) is that, like I suspected and feared from the start of the TPN regimen, Gracie was entirely fluid overloaded. Her fluid intake tripled and her body did not compensate well at all. She looks much better now, not quite so puffy as she did Thursday and Friday. She just started G-tube feedings again, slowly, today. And tomorrow night the TPN will resume, but at a reduced volume. We will weigh her in the morning to find out just how much she lost over the last few days. At least it was likely fluid weight and not "real weight."
So, back to today... The respiratory culture they took Friday got lost - - it never made it down to the lab. WHAT?! I could have walked it down... I know where the freakin' lab is! As a result of carelessness, we lost two days worth of growth time, thus two days toward determining what other bugs she might have. Seriously?
Then, (yes, there is more), when the night nurse came in, she said, "So, she was readmitted for a GI bleed and increased secretions?" I just about fell over. Because of my gaping mouth, she added, "That's what I was told during report at shift change." Um, no... she was admitted for a ridiculous fever, rapid respirations and general discomfort. She has a line infection and pneumonia. Ugh.
I should be fair, I guess, and say that I know human error occurs all the time, even in the finest of Children's Hospitals. I know things get lost, either in translation or tangibly. But, really... so much, all at once, regarding one patient? So very frustrated.
Thankfully, that alone gave me enough fuel to calmly and rationally, but FIRMLY, deal with the rest of the day. I am beyond frustrated with what unfolded today regarding communication within the team of doctors, the team's communication with me and John, communication between nurses, communication and follow-through with the lab, and I think, worst of all, the physicians' attention to details.
On Friday we were told by two different docs that Gracie's chest xray looked great (which didn't make sense to us given her symptoms... I know my daughter), but if the film looked "great," then it looked great. Because it looked so great per the ER doc and the ICU attending, I asked a lot of questions once the attending came in to see us in the PICU. I explained her symptoms - - shortness of breath, coarse lung sounds, general fatigue, bloated appearance, more labored inspirations - - and I pointedly asked what, if not her lungs and/or heart, would cause all of these symptoms? He explained that the infection could have been brewing for some time and that those things could likely be caused by an infection. I then asked about breathing treatments... we had been giving her treatments around the clock but had not noticed a marked difference... and he said that it wouldn't have made a difference since it wasn't a lung issue.
This morning, I talked to the same doctor when he came in to discuss her improved status. I expressed that, while doing much better, she is still breathing fairly rapidly and her heart rate is still in the higher range of her pacemaker. He again suggested that the infection was the culprit, but that we could certainly do another chest xray to make sure that she hadn't developed a bit of pneumonia.
Following the xray, the on-call Cardiologist came in and said that her heart still looks enlarged and her lungs are wet, but better than on Friday. WHAT?! Needless to say, this started a whole line of questioning from me. I explained what we'd been told on multiple occasions by the other doctors and was not happy that this diagnosis had not been correctly interpreted by them. The cardiologist's suspicion was that the doctors had looked at her discharge xray from July 2nd and the xray from Friday, compared them, but then mixed up which was which when drawing their conclusions. I don't get how that can happen... there are also the written notes from the radiologist. How two doctors miss that is beyond me, unless one took the word of the other and never double checked. I talked to the cardiologist about all of my concerns... the same ones I expressed to the other doctor on Friday... and he felt my assessment of Gracie was right on.
Next, the Infectious Diseases Doctor came in and said that the line infection is definitely improving and, as far as bacterias go, Gracie's is the best case scenario. She described the bacteria as "unimpressive" and that it just needs to be treated, which we are. She also said that she is far more concerned about the pneumonia. THIS is what I thought was wrong when I brought her in... and this is what was "ruled out" on Friday by the ER and ICU doctors. WHY are we now getting an entirely different story about her lungs?! UGH. I explained all my frustrations to her, too, because anyone who walked through the door was going to hear about it. I may not be a doctor, but I play one in real life.
Thankfully, Gracie has been properly covered all along (for all the issues) with the antibiotics that the Infectious Diseases doctor prescribed. That's because she knew the whole picture... the line infection is real, but so is the lung/fluid issue. The consensus (between those who actually know what they are talking about) is that, like I suspected and feared from the start of the TPN regimen, Gracie was entirely fluid overloaded. Her fluid intake tripled and her body did not compensate well at all. She looks much better now, not quite so puffy as she did Thursday and Friday. She just started G-tube feedings again, slowly, today. And tomorrow night the TPN will resume, but at a reduced volume. We will weigh her in the morning to find out just how much she lost over the last few days. At least it was likely fluid weight and not "real weight."
So, back to today... The respiratory culture they took Friday got lost - - it never made it down to the lab. WHAT?! I could have walked it down... I know where the freakin' lab is! As a result of carelessness, we lost two days worth of growth time, thus two days toward determining what other bugs she might have. Seriously?
Then, (yes, there is more), when the night nurse came in, she said, "So, she was readmitted for a GI bleed and increased secretions?" I just about fell over. Because of my gaping mouth, she added, "That's what I was told during report at shift change." Um, no... she was admitted for a ridiculous fever, rapid respirations and general discomfort. She has a line infection and pneumonia. Ugh.
I should be fair, I guess, and say that I know human error occurs all the time, even in the finest of Children's Hospitals. I know things get lost, either in translation or tangibly. But, really... so much, all at once, regarding one patient? So very frustrated.
Saturday, July 17, 2010
ICU... again
It’s amazing how fast things can change in less than 72 hours.
Little Miss "Cute as a Cupcake" in an adorable t-shirt from Mighty Max and his amazing mama, Amy!
This is what Gracie looked like late Tuesday afternoon. By Thursday morning she wasn’t feeling well… she had a low grade fever and another bleed in her stomach. By evening, she was pretty uncomfortable. I was about to take her into the ER, but we opted to try and ride out the night and see if we could keep her comfortable at home. We hesitated to head back to the hospital because she almost always catches something while inpatient and it is far better to be miserable at home than miserable in the hospital. But by Friday morning she earned herself a trip to the ER with a 104.4 fever, rapid breathing and awful coloring… exactly two weeks after she was most recently discharged and exactly one month to the day of receiving her PICC line.
Because her fever was so high and her coloring so poor (pale, mottled extremities) and her lower legs and feet were very cold, the ER doctor was afraid that she was in septic shock. After a few hours, the coloring and temperature of her feet improved, while her fever remained high and breathing remained fast. The PICC line appeared to be the culprit, but I was holding out hope that the source of the fever was something else. Her chest x-ray came back clear – great, as a matter of fact. I don’t think I’ve ever actually hoped for pneumonia until Friday. A line infection is much scarier, quite frankly. Her echo looked good…so it wasn’t her heart. But her heart is in danger with a line infection, especially because such an infection presents risk to her pacemaker leads and bad cells more easily cling to her heart due to blood regurgitation from her mitral valve and subaortic membrane.
She has had a bevy of tests over the last 36 hours. (In the ER, sweet girl signed “no, what’s wrong?” while the nurses were catheterizing her to get a urine sample. While I was so sad to see her upset, I was so grateful she was communicating. We haven't seen much of that since.) Her blood levels are positive for infection and were worse on Saturday than Friday. Because of anemia, she received a blood transfusion on Friday night. They have yet to determine the exact cause of the infection, that is, whether it is the PICC line itself or in her bloodstream in general. These things will take time to determine, but if she worsens at all, the line comes out. The hope is to save the line (within reason, of course), especially because getting it in was so difficult in the first place. Her fever has fluctuated up and down, but the high is now in the 102+ range instead of 104+.
In hindsight, we’ve been seeing signs of probable infection since before she was discharged on July 2nd. We’ve shared details of changes… literally every little thing… with the doctors all along. And, it’s not that they have necessarily missed something, as there are so many explanations for all the things that have changed or evolved since Gracie got her PICC line. For instance, her breathing started to change pretty early on - - since she was admitted for tracheitis and a respiratory infection at the end of June, it was just assumed that the breathing was because of that. However, once her lungs looked and sounded better, her respirations were rapid. Her baseline heart rate increased over the last few weeks. She fatigued more easily. She fought all walking and cried nearly every time we tried. She was more short of breath with increased activity. A lot of this could be expected with the rapid weight gain - - her body certainly had to make adjustments for a 25% body weight increase in one short month. We now can deduce that these symptoms were likely signs of brewing infection. (She's had some strange behaviors brewing as well… an increased need for sensory input, she was rough… pulling my hair to get me closer to her, pinching me hard, grabbing legs or arms of anyone nearby to pull them to her, grabbing Preston’s leg and pulling him to the floor to wrestle - - which was actually funny - - but “off.” She was also staying up at night laughing hysterically - - uncontrollably. It was all very strange, but we figured that her body was changing, so might her vestibular/sensory input needs.)
I just can’t believe she has an infection. We were so very careful. I take little comfort in knowing that these things can just happen, regardless of how careful we’ve been or how careful the hospital staff was while she was inpatient. I take little comfort in the fact that this has probably been brewing for a while and was undetected at the fault of no one. She is sick… regardless of cause, regardless of the likelihood… and it just stinks.
This is her third hospitalization in a month… one scheduled because of the PICC placement and two as a result of illness. Up until June 15th, her most recent stay was in August of 2008 (scheduled surgery, not illness), so we should be grateful for the extended time away. Granted, there have been many occasions where she was borderline “hospital worthy,” especially since January. When I break it down, she has been so sick this whole year - - every two to three weeks she has had something that’s knocked her out, either illness or an abdominal migraine.
Wondering, at what point, this is going to stop. Wondering when she catches a break. Wondering why she continues to suffer so much… the bad days have been outweighing the good for a while now, just like they did up until she was about four and a half. Plain and simple… it’s just not right.
This is what Gracie looked like late Tuesday afternoon. By Thursday morning she wasn’t feeling well… she had a low grade fever and another bleed in her stomach. By evening, she was pretty uncomfortable. I was about to take her into the ER, but we opted to try and ride out the night and see if we could keep her comfortable at home. We hesitated to head back to the hospital because she almost always catches something while inpatient and it is far better to be miserable at home than miserable in the hospital. But by Friday morning she earned herself a trip to the ER with a 104.4 fever, rapid breathing and awful coloring… exactly two weeks after she was most recently discharged and exactly one month to the day of receiving her PICC line.
Because her fever was so high and her coloring so poor (pale, mottled extremities) and her lower legs and feet were very cold, the ER doctor was afraid that she was in septic shock. After a few hours, the coloring and temperature of her feet improved, while her fever remained high and breathing remained fast. The PICC line appeared to be the culprit, but I was holding out hope that the source of the fever was something else. Her chest x-ray came back clear – great, as a matter of fact. I don’t think I’ve ever actually hoped for pneumonia until Friday. A line infection is much scarier, quite frankly. Her echo looked good…so it wasn’t her heart. But her heart is in danger with a line infection, especially because such an infection presents risk to her pacemaker leads and bad cells more easily cling to her heart due to blood regurgitation from her mitral valve and subaortic membrane.
She has had a bevy of tests over the last 36 hours. (In the ER, sweet girl signed “no, what’s wrong?” while the nurses were catheterizing her to get a urine sample. While I was so sad to see her upset, I was so grateful she was communicating. We haven't seen much of that since.) Her blood levels are positive for infection and were worse on Saturday than Friday. Because of anemia, she received a blood transfusion on Friday night. They have yet to determine the exact cause of the infection, that is, whether it is the PICC line itself or in her bloodstream in general. These things will take time to determine, but if she worsens at all, the line comes out. The hope is to save the line (within reason, of course), especially because getting it in was so difficult in the first place. Her fever has fluctuated up and down, but the high is now in the 102+ range instead of 104+.
In hindsight, we’ve been seeing signs of probable infection since before she was discharged on July 2nd. We’ve shared details of changes… literally every little thing… with the doctors all along. And, it’s not that they have necessarily missed something, as there are so many explanations for all the things that have changed or evolved since Gracie got her PICC line. For instance, her breathing started to change pretty early on - - since she was admitted for tracheitis and a respiratory infection at the end of June, it was just assumed that the breathing was because of that. However, once her lungs looked and sounded better, her respirations were rapid. Her baseline heart rate increased over the last few weeks. She fatigued more easily. She fought all walking and cried nearly every time we tried. She was more short of breath with increased activity. A lot of this could be expected with the rapid weight gain - - her body certainly had to make adjustments for a 25% body weight increase in one short month. We now can deduce that these symptoms were likely signs of brewing infection. (She's had some strange behaviors brewing as well… an increased need for sensory input, she was rough… pulling my hair to get me closer to her, pinching me hard, grabbing legs or arms of anyone nearby to pull them to her, grabbing Preston’s leg and pulling him to the floor to wrestle - - which was actually funny - - but “off.” She was also staying up at night laughing hysterically - - uncontrollably. It was all very strange, but we figured that her body was changing, so might her vestibular/sensory input needs.)
I just can’t believe she has an infection. We were so very careful. I take little comfort in knowing that these things can just happen, regardless of how careful we’ve been or how careful the hospital staff was while she was inpatient. I take little comfort in the fact that this has probably been brewing for a while and was undetected at the fault of no one. She is sick… regardless of cause, regardless of the likelihood… and it just stinks.
This is her third hospitalization in a month… one scheduled because of the PICC placement and two as a result of illness. Up until June 15th, her most recent stay was in August of 2008 (scheduled surgery, not illness), so we should be grateful for the extended time away. Granted, there have been many occasions where she was borderline “hospital worthy,” especially since January. When I break it down, she has been so sick this whole year - - every two to three weeks she has had something that’s knocked her out, either illness or an abdominal migraine.
Wondering, at what point, this is going to stop. Wondering when she catches a break. Wondering why she continues to suffer so much… the bad days have been outweighing the good for a while now, just like they did up until she was about four and a half. Plain and simple… it’s just not right.
Friday, July 9, 2010
Foto Friday 2, vol. 15 - Nothing ever goes according to plan...
As many of our family and friends know from Facebook, the last three weeks haven't gone as planned. Gracie was inpatient June 15 - June 19 and then again from June 22 - July 2. We have been home one week today!
Gracie was admitted June 15th to get her PICC line placed. Unfortunately, the PICC team was not able to get the line placed themselves and sge had to go into Interventional Radiology late the following afternoon and have it placed under general anesthesia. Both the Radiologist and the Anesthesiologist said that he barely got the line in... her veins are "difficult" and he was afraid the entire time he wasn't going to get it in. They both separately said they hoped she'd never need another one. Needless to say, that freaked us out.
Gracie did great during her stay, but due to very poor planning by a case manager (who also had horrible bedside manner), Gracie's discharge was delayed a day because things couldn't be coordinated with home care and supplies for her PICC. We got home on Saturday, June 19th. That extra day (I am sure of it) resulted in both of us blossoming with colds on Monday night and by Tuesday the 22nd, Gracie had a low grade fever which later blossomed into a scary high fever - 104.6 temporal with Tylenol and Ibuprofen - and yielded a visit to the ER Tuesday evening. (Because she has a PICC, we had to be certain that the fever wasn't due to a blood infection.)
I was certain she didn't have an issue with her PICC and knew that it was respiratory in nature - - which wasn't rocket science considering the awful "ick" she had in her trach. First diagnosis: Acute Tracheitis. They immediately began treating her with IV antibiotics and ran every lab you can imagine. Her blood pressure was exceedingly low so they were bolusing fluids into her like crazy. We were finally admitted to CHOC from the ER at 1:30 in the morning. At 5:30 in the morning, they still couldn't get her blood pressure up, so we were transferred to the PICU. Her blood pressure recovered fairly quickly after that, but I was panicked by the amount of fluids they'd given her on top of her TPN and how that might affect her heart. Her respiratory status was poor, but well managed with regular breathing treatments,so it didn't appear that she was harboring too much fluid in and around her lungs.
But, that wasn't all that Miss Gracie had up her sleeves. She decided to let the doctors see many of the things that I've been describing to them for months now. It was hard to tell if she was in the midst of an abdominal migraine cycle or not, considering how miserable she was, but they were certainly paying more attention to her symptoms. On Wednesday morning, she had a lot of old blood in her G-tube. By Thursday, it was frank blood... and a lot of it. On Friday, the 25th, they did an EGD with biopsy. (Esophagogastroduodenoscopy - an examination of the lining of the esophagus, stomach, and upper duodenum with a small camera - flexible endoscope - which is inserted down the throat). While they were amazed (as were her past doctors) at how friable her stomach is - - the scope gently touching the wall of her stomach causes a bleed, as does the tiniest bit of air blown on the lining, this is not new information to us. And like Gracie's previous doctors, they have no explanation or solution for this bleeding issue and moved her out of ICU with the idea to conference about all of her other issues and formulate a plan.
In the meantime, she began having tremendous amounts of frank blood from her trach, caused by the incessant, hard coughing and dry hospital air. Even the cool mist wasn't keeping it at bay. One of the labs came back with parainfluenza, but they didn't do anything new to treat that... it just had to run its course. Gracie had a second bleed 24 hours after the EGD and because of that, we were monitoring the blood in her stools, too. Still no explanations for the bleeds, but they finally understand that the amount of bleeding is more serious than they'd thought even with my previous (and frequent) explanations. Because of the bleeding, her blood levels were low and they were watching her hemoglobin closely. They were considering a transfusion last Monday, but decided she was asymptomatic and held off. Not sure that was wise... she had been lethargic and sleeping 16-18 hours a day since she came home but finally recovered from the lethargy Wednesday. She is still sleeping more than usual (during the day, unfortunately), but that is likely her body adjusting to the sudden weight gain and proper nutrition.
In the first few days, she dropped all the weight she had gained with the PICC... however, she now has recovered that weight and MORE! Woo Hoo! At the end of May, during her horrible abdominal migraine, she dropped to 23 lbs. She was 24.64 lbs on June 15th. As of yesterday, she was 29.04 lbs - - awesome! This is the heaviest she's been since August 2008 and only 1.5 lbs away from her heaviest weight ever... 30.5 lbs at age four. Her nails and hair are growing like gang-busters! The doctor will likely be reducing her TPN volume next week depending on how much more she gains. This is all great news...
However, we haven't resolved the neurological/nervous system issues... and probably won't. Most likely, we will only be able to manage with meds as best as possible. We also haven't determined the source for her literal passing out following feedings. It doesn't happen with every feeding, but it happens at least once a day and usually three times out of the five daytime feedings, regardless of being on the pump or a bolus. It is not a glucose issue (at least that we've caught)... which we monitored in the past for months and monitored during the recent hospital stay. She doesn't appear to have a dumping problem, at least that can be determined with the testing that has been done recently and in the past. (She had a TORTUROUS gastric emptying study during her stay. She has had several in her life, some incomplete because she vomited, but none as horrendous as this one. She was understandably furious about having her hands held down and being bound to a table for 90 minutes. She managed to work her way out of the contraption SIX times during the study... proving that size and health status have nothing to do with strength or will. My sweet girl was so happy to have her hands free at the conclusion of the study that she literally waved to every single person we passed on the way back to her room!)
The majority of our discussions with doctors surrounded Gracie's Nissen Fundoplication and her Paraesophageal Hernia. In the past, her doctors have felt that the hernia was "surgically unremarkable" and too small to be the source of much discomfort. Here, the docs feel that, although it is small, Gracie is symptomatic - - that is, she shows all the signs of being bothered by the defect, regardless of its size. Their hope is that by repairing that hernia and redoing the fundoplication, she will not have nearly as many secretions (as they will more easily be able to flow into her stomach) and that, perhaps, she will be more comfortable with feedings. There is also thought that her pacemaker leads could be making the problem worse when she's fed. In the past she has had diaphramatic pacing which worsened with feedings, so there is a chance that these issues are all tied together given that everything is sitting in the same region of her anatomy.
We spent a lot of time asking the GI team questions and met with the surgeon who was very kind to spend significant time answering even more questions. While we are now in favor of repairing the hernia, we are concerned about several things... the biggest concern being that the Nissen Fundoplication will slip again due to her neurological issues (the frequent retching) and she will be back in the same boat. Since they want her in optimal nutritional status before surgery, we have a few weeks to research, talk to other families (anyone with input, PLEASE COMMENT!) and conference with the team again. She will have surgery in mid-August, but at this point, we don't know exactly what surgery.
She was discharged with the following plan: gain weight and stay healthy.
The trachietis and respiratory ick is better, but because of the large amount of fluid she is getting, her lungs are not sounding so hot. She is getting round the clock breathing treatments and sounds much more coarse than she used to. (There actually was a benefit to the limited fluid she was getting before the PICC... her lungs and heart were operating more optimally... go figure.)
As we beef up our girl, the doctors are hopeful her improved nutritional status will change her tolerance to the G-tube feedings. John and I have been skeptical of that concept since we started discussing TPN... so far, unfortunately, we are right. She is sound asleep right now, as I fed her about forty-five minutes ago. The good news is, she is sound asleep at home. The other good news is that when she is awake, she is a happy, chubbier by the second, camper!
Gracie was admitted June 15th to get her PICC line placed. Unfortunately, the PICC team was not able to get the line placed themselves and sge had to go into Interventional Radiology late the following afternoon and have it placed under general anesthesia. Both the Radiologist and the Anesthesiologist said that he barely got the line in... her veins are "difficult" and he was afraid the entire time he wasn't going to get it in. They both separately said they hoped she'd never need another one. Needless to say, that freaked us out.
Gracie did great during her stay, but due to very poor planning by a case manager (who also had horrible bedside manner), Gracie's discharge was delayed a day because things couldn't be coordinated with home care and supplies for her PICC. We got home on Saturday, June 19th. That extra day (I am sure of it) resulted in both of us blossoming with colds on Monday night and by Tuesday the 22nd, Gracie had a low grade fever which later blossomed into a scary high fever - 104.6 temporal with Tylenol and Ibuprofen - and yielded a visit to the ER Tuesday evening. (Because she has a PICC, we had to be certain that the fever wasn't due to a blood infection.)
I was certain she didn't have an issue with her PICC and knew that it was respiratory in nature - - which wasn't rocket science considering the awful "ick" she had in her trach. First diagnosis: Acute Tracheitis. They immediately began treating her with IV antibiotics and ran every lab you can imagine. Her blood pressure was exceedingly low so they were bolusing fluids into her like crazy. We were finally admitted to CHOC from the ER at 1:30 in the morning. At 5:30 in the morning, they still couldn't get her blood pressure up, so we were transferred to the PICU. Her blood pressure recovered fairly quickly after that, but I was panicked by the amount of fluids they'd given her on top of her TPN and how that might affect her heart. Her respiratory status was poor, but well managed with regular breathing treatments,so it didn't appear that she was harboring too much fluid in and around her lungs.
But, that wasn't all that Miss Gracie had up her sleeves. She decided to let the doctors see many of the things that I've been describing to them for months now. It was hard to tell if she was in the midst of an abdominal migraine cycle or not, considering how miserable she was, but they were certainly paying more attention to her symptoms. On Wednesday morning, she had a lot of old blood in her G-tube. By Thursday, it was frank blood... and a lot of it. On Friday, the 25th, they did an EGD with biopsy. (Esophagogastroduodenoscopy - an examination of the lining of the esophagus, stomach, and upper duodenum with a small camera - flexible endoscope - which is inserted down the throat). While they were amazed (as were her past doctors) at how friable her stomach is - - the scope gently touching the wall of her stomach causes a bleed, as does the tiniest bit of air blown on the lining, this is not new information to us. And like Gracie's previous doctors, they have no explanation or solution for this bleeding issue and moved her out of ICU with the idea to conference about all of her other issues and formulate a plan.
In the meantime, she began having tremendous amounts of frank blood from her trach, caused by the incessant, hard coughing and dry hospital air. Even the cool mist wasn't keeping it at bay. One of the labs came back with parainfluenza, but they didn't do anything new to treat that... it just had to run its course. Gracie had a second bleed 24 hours after the EGD and because of that, we were monitoring the blood in her stools, too. Still no explanations for the bleeds, but they finally understand that the amount of bleeding is more serious than they'd thought even with my previous (and frequent) explanations. Because of the bleeding, her blood levels were low and they were watching her hemoglobin closely. They were considering a transfusion last Monday, but decided she was asymptomatic and held off. Not sure that was wise... she had been lethargic and sleeping 16-18 hours a day since she came home but finally recovered from the lethargy Wednesday. She is still sleeping more than usual (during the day, unfortunately), but that is likely her body adjusting to the sudden weight gain and proper nutrition.
In the first few days, she dropped all the weight she had gained with the PICC... however, she now has recovered that weight and MORE! Woo Hoo! At the end of May, during her horrible abdominal migraine, she dropped to 23 lbs. She was 24.64 lbs on June 15th. As of yesterday, she was 29.04 lbs - - awesome! This is the heaviest she's been since August 2008 and only 1.5 lbs away from her heaviest weight ever... 30.5 lbs at age four. Her nails and hair are growing like gang-busters! The doctor will likely be reducing her TPN volume next week depending on how much more she gains. This is all great news...
However, we haven't resolved the neurological/nervous system issues... and probably won't. Most likely, we will only be able to manage with meds as best as possible. We also haven't determined the source for her literal passing out following feedings. It doesn't happen with every feeding, but it happens at least once a day and usually three times out of the five daytime feedings, regardless of being on the pump or a bolus. It is not a glucose issue (at least that we've caught)... which we monitored in the past for months and monitored during the recent hospital stay. She doesn't appear to have a dumping problem, at least that can be determined with the testing that has been done recently and in the past. (She had a TORTUROUS gastric emptying study during her stay. She has had several in her life, some incomplete because she vomited, but none as horrendous as this one. She was understandably furious about having her hands held down and being bound to a table for 90 minutes. She managed to work her way out of the contraption SIX times during the study... proving that size and health status have nothing to do with strength or will. My sweet girl was so happy to have her hands free at the conclusion of the study that she literally waved to every single person we passed on the way back to her room!)
The majority of our discussions with doctors surrounded Gracie's Nissen Fundoplication and her Paraesophageal Hernia. In the past, her doctors have felt that the hernia was "surgically unremarkable" and too small to be the source of much discomfort. Here, the docs feel that, although it is small, Gracie is symptomatic - - that is, she shows all the signs of being bothered by the defect, regardless of its size. Their hope is that by repairing that hernia and redoing the fundoplication, she will not have nearly as many secretions (as they will more easily be able to flow into her stomach) and that, perhaps, she will be more comfortable with feedings. There is also thought that her pacemaker leads could be making the problem worse when she's fed. In the past she has had diaphramatic pacing which worsened with feedings, so there is a chance that these issues are all tied together given that everything is sitting in the same region of her anatomy.
We spent a lot of time asking the GI team questions and met with the surgeon who was very kind to spend significant time answering even more questions. While we are now in favor of repairing the hernia, we are concerned about several things... the biggest concern being that the Nissen Fundoplication will slip again due to her neurological issues (the frequent retching) and she will be back in the same boat. Since they want her in optimal nutritional status before surgery, we have a few weeks to research, talk to other families (anyone with input, PLEASE COMMENT!) and conference with the team again. She will have surgery in mid-August, but at this point, we don't know exactly what surgery.
She was discharged with the following plan: gain weight and stay healthy.
The trachietis and respiratory ick is better, but because of the large amount of fluid she is getting, her lungs are not sounding so hot. She is getting round the clock breathing treatments and sounds much more coarse than she used to. (There actually was a benefit to the limited fluid she was getting before the PICC... her lungs and heart were operating more optimally... go figure.)
As we beef up our girl, the doctors are hopeful her improved nutritional status will change her tolerance to the G-tube feedings. John and I have been skeptical of that concept since we started discussing TPN... so far, unfortunately, we are right. She is sound asleep right now, as I fed her about forty-five minutes ago. The good news is, she is sound asleep at home. The other good news is that when she is awake, she is a happy, chubbier by the second, camper!
Monday, June 14, 2010
The TPN journey starts tomorrow
We heard from the hospital PICC team this afternoon. Apparently, arrangements had been made this morning by the GI staff and hospital to have Gracie admitted today at 1pm. The only problem is, no one thought to notify Gracie's parents... um... minor detail people!
All is straightened out now, and thanks to friends willing to pitch in where needed and Nana & Papa being able to come down and help us with Preston, all systems are "go" for admission tomorrow. We had hoped to wait until next Monday - - Gracie would be able to finish out the last two days of school (which she's really been enjoying since the end of her last abdominal migraine) and John has more days off next week (which would make it easier on Preston and each of us could take turns at the hospital). But as timing would have it, Gracie had a rough evening tonight and appears to be starting another pain cycle. Hopefully, this is not the case and she'll be feeling better tomorrow. It has, however, been exactly three weeks since the last cycle started, so she's due...
The plan is that both John and I will take Gracie to be admitted around noon and the line will be placed by late afternoon. He will stay with her the first night and then, starting Wednesday, I will be with her until she's discharged.
I will update as I can...
All is straightened out now, and thanks to friends willing to pitch in where needed and Nana & Papa being able to come down and help us with Preston, all systems are "go" for admission tomorrow. We had hoped to wait until next Monday - - Gracie would be able to finish out the last two days of school (which she's really been enjoying since the end of her last abdominal migraine) and John has more days off next week (which would make it easier on Preston and each of us could take turns at the hospital). But as timing would have it, Gracie had a rough evening tonight and appears to be starting another pain cycle. Hopefully, this is not the case and she'll be feeling better tomorrow. It has, however, been exactly three weeks since the last cycle started, so she's due...
The plan is that both John and I will take Gracie to be admitted around noon and the line will be placed by late afternoon. He will stay with her the first night and then, starting Wednesday, I will be with her until she's discharged.
I will update as I can...
Friday, June 11, 2010
Foto Friday 2, vol. 14 - "Marshmallow Perfect"
Last Sunday was a beautiful, sunny day - - the kind of day that begged for barely dressed, sunscreen lathered kids to frolic in the yard... a day for water tables to be filled, dumped and refilled.
Though she was slow to start both days of the weekend (I bumped up her night and morning feedings), Gracie was out of her room and ready to play around noon on Sunday. She thoroughly enjoyed the distraction that the water table and bubble gun provided in between feedings. As a bonus, she wore her hat the better part of the afternoon - - a record, indeed!
While waiting for Gracie to come out and play, Preston enjoyed a snack of "cracker stacks" (wheat thins, laughing cow cheese and salami) on the lounge chair. "This is the life," he said as he snacked away. It was, according to him...
And then he played "Rocket Launcher" on my knees...
Later on, he dazzled me with chalk by practicing some of his letters on our brick wall. He's doing really well with this, and even surprised me by alternating between his left and right hand...
Gracie worked her way up and down the sidewalk in her wheelchair... (notice the hat is still on?! And, Kim... notice her tank top?! Thank you!)
To finish off a great day in the late afternoon sunshine, Preston, Gracie and Addison took a wagon ride.
Though she was slow to start both days of the weekend (I bumped up her night and morning feedings), Gracie was out of her room and ready to play around noon on Sunday. She thoroughly enjoyed the distraction that the water table and bubble gun provided in between feedings. As a bonus, she wore her hat the better part of the afternoon - - a record, indeed!
While waiting for Gracie to come out and play, Preston enjoyed a snack of "cracker stacks" (wheat thins, laughing cow cheese and salami) on the lounge chair. "This is the life," he said as he snacked away. It was, according to him...
And then he played "Rocket Launcher" on my knees...
Later on, he dazzled me with chalk by practicing some of his letters on our brick wall. He's doing really well with this, and even surprised me by alternating between his left and right hand...
Gracie worked her way up and down the sidewalk in her wheelchair... (notice the hat is still on?! And, Kim... notice her tank top?! Thank you!)
To finish off a great day in the late afternoon sunshine, Preston, Gracie and Addison took a wagon ride.
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