I am SO VERY excited to turn the calendar tomorrow morning. So excited. It is my intent to turn the page on the month, say farewell to a really horrific summer and embrace the month of September with open arms and a fresh outlook. (Granted, this completely goes against my "day by day" mantra and my opinion that changing the calendar from one year to another shouldn't be all about resolutions, but I really don't care this time! Sometimes our own rules are meant to be broken!)
The fact that Gracie is feeling so much better most definitely adds to my enthusiasm! She turned a corner late Saturday afternoon and by Sunday was enjoying time at the park with Preston's school friends and playtime with our neighbors in the afternoon! It was, without a doubt, her best day since June and the good days have continued. She definitely had a raging ear infection in her left ear and was brewing some increased "ick" in her trach, but the combination of antibiotic ear drops and an inhaled antibiotic, along with an extra dose of lasix to get rid of some extra fluid she was retaining, did the trick. All of that, and "outing" her on the blog and facebook by writing about how awful she was feeling, got her to perk up!
So, Adios Awful August!!!
Tuesday, August 31, 2010
Friday, August 27, 2010
Foto Friday 2, vol. 17 - "We are a family again."
These words (from Preston, of course) as we all sat in the backyard together on Monday, splashing, soaking and relaxing in the kiddie pools. The depth of his statement was not lost on John or me as we exchanged a quiet look and tear-filled eyes. We know his words did not mean that he thought we weren't a family the whole summer, just that he was so grateful we were finally together again. Sweet, sweet boy... who then promptly splashed Gracie and me.
The hospital journey through photos...
Gracie was discharged on Saturday, August 21st, her 42nd day in the hospital since June 15th. She almost came home on that Friday, but because of some lab results, cardiology held her one more day. In all, she has nine follow-up appointments scheduled in the next two weeks. Five with docs due to the hospitalization and surgery and four others that she missed because of the multiple hospitalizations throughout the summer. You name a specialist and we are headed their way soon.
It is, without a doubt, good to be home. It has not, however, been easy. Gracie's feeding regimen is intense. (But, I am happy to report that she doesn't retch and sob every time she is fed! She does, however, tend to be very sleepy while eating, regardless of the regimen.) She is weak. She is tired. And, it appears, once again, that she has a bug. I am trying to be positive... trying to put on a smile when people say, "She looks good," all the while knowing that she doesn't look good at all. She looks puffy - - in her feet and her face - - she looks fluid overloaded again. Her secretions are back with a vengeance and they are not the right color. She has been off of antibiotics (big, big guns... the "we have nothing else to try" level of antibiotics) for one week today - - just one week. The fact that, in the midst of her last course of antibiotics, she managed to spike a fever again for two more days stumped the Infectious Disease docs. I wonder what they are going to think of this latest development...
School starts Monday the 30th and regardless of her health, that situation has not been without drama either. I won't be going into the details here or on Facebook (for obvious "public forum" reasons), but suffice it to say that the issues are not small and were dumped on us without warning on August 17th, just 13 days before school was set to start.
I long for my girl to feel well, to not be exhausted by her favorite activities, to smile without effort. I long for the "simple" days of our organized chaos. I long for the lighter side of life to exist for more than five minutes. I long for that to show through here on our blog. We have been so touched by the care packages for our family, the gifts for both of the kids, the meals, the calls, emails, texts and posts, etc. We have been wrapped in love, support and prayer by so many wonderful people... some we've never even met... and those things are so appreciated. I can only imagine, without all of that, how awful I'd feel and how poor my outlook would be. I feel like I've been stuck in a rut of serious doldrums for a while, and though I know I have every reason to feel like that, I hate that I do.
So, as I nurse my sweet girl back to health, I am also going to make an effort to nurse my state of mind. To get my "glass half-full" attitude again, I will attempt to make September a blogging month. (Operative word here is attempt.) In between all of the hospital chaos, just prior to it and even during, there have been so many moments that are blog-worthy and I need to get them captured here. So, stop by more in September, maybe leave a comment and let me know you've been around! It will inspire me to actually follow-through and just might help fill my cup past that halfway mark!
Friday, August 13, 2010
Post-Op Update
First, thank you so much to everyone for all the love, support and prayers. We truly appreciate, as always, all the blog comments, text messages, voicemails and FB messages... they help give us strength.
Gracie's surgery went on as scheduled Wednesday afternoon. The surgery itself was much more difficult and took longer than anticipated. Though it came as no surprise to us, they found getting a new central line placed to be quite challenging. It took three attempts to get it done. Next came the actual surgery itself, which was, to quote her surgeon directly, "... a very, very difficult case." Dr. Lam and his team worked tirelessly to complete the surgery laparoscopically, and for that we are incredibly grateful. It means a much easier recovery for Gracie and far less risk of infection.
As it turned out, Gracie's liver and stomach were completely fused together by adhesions, so before he could actually begin repairing the hernia and re-doing her fundoplication, he had to separate the liver and stomach. Once he did that, he "took down" the hernia and, interestingly enough, found her fundo hadn't slipped, rather was fully intact and shoved up into her chest. He reinforced the fundo, all the while, the surgical assistant holding her liver up with the probes in order to keep his line of vision clear for working. He and his team were exhausted... and he wasn't ashamed to admit it. She was finally rolled out of the OR around 6pm... about three and a half hours after they started.
Our only objective has been to keep Gracie's pain managed and, of course, carefully monitor her vital signs. Her little body has been put through the ringer from this major surgery - not to mention the last two months - and we just want her to rest and heal. Unfortunately, she had tremendous breakthrough pain and, for the first day, needed hourly morphine to stay comfortable. She was also on Ativan, Tylenol and Benadryl (to control the itching from the morphine). It was absolutely heartbreaking to watch her writhe in such agonizing pain. She required a blood transfusion on Thursday. Her chest X-ray mid-day Thursday looked "fuzzy" and today's looked even "fuzzier." She retained a lot of fluid and required an extra dose of IV lasix to try and get rid of it (aside from the twice daily IV lasix she is already on). She required IV albumin because that is low (which has been her trend her whole life, regardless of her nutritional status) as is her prealbumin. She has been running a constant fever of 102 without Tylenol on board. Her CRP and white count are high... the CRP is expected to be high following surgery, however, hers was exceptionally higher today. All of this is pointing toward another respiratory infection. What's so unsettling is that she was so well covered with two broad-spectrum antibiotics for the last ten days. Based on preliminary culture results, they added a new antibiotic today and will make adjustments once the culture has had another 48 hours to grow.
With all that she has going on it becomes more difficult to assess her pain vs. discomfort from what might be brewing. Now that she is 48 hours post-op, we are trying to stagger some of her meds to keep her relaxed and pain free, yet at the same time, not wanting to snow her to the point that we can't really tell how she is. It's a fine balance and exhausting, especially today when she had a day nurse who insisted on questioning both John and me on every thing we asked for and how we're doing things. She was nice enough, but not a great team player and I have already asked the charge nurse that today's nurse not be assigned to Gracie again. (We have only done that two other times in Gracie's entire hospitalization history.) Poor rapport with the nurse just made an already difficult day more challenging. Thankfully, tonight she has Katie, a great nurse, who has taken care of her several times before and whom I was very relieved to see at 7:30 this evening.
Tomorrow they will start clear fluids on a drip through her suspended G-tube at a rate of 10cc an hour. I am so anxious about this as she has been gagging, retching and super junky with her trach secretions all day. I am trying not to pass any judgment about the success of the surgery - - or the new trach size - - until more time has passed and she has a chance to heal, but it's already concerning that her oral and trach secretion production is relatively the same when the docs expected that the combination of these two things should result in a vast improvement. I will be patient, though and let time tell. Please wish our Little Miss luck as she resumes fluids in her tummy for the first time since total gut rest.
Gracie's surgery went on as scheduled Wednesday afternoon. The surgery itself was much more difficult and took longer than anticipated. Though it came as no surprise to us, they found getting a new central line placed to be quite challenging. It took three attempts to get it done. Next came the actual surgery itself, which was, to quote her surgeon directly, "... a very, very difficult case." Dr. Lam and his team worked tirelessly to complete the surgery laparoscopically, and for that we are incredibly grateful. It means a much easier recovery for Gracie and far less risk of infection.
As it turned out, Gracie's liver and stomach were completely fused together by adhesions, so before he could actually begin repairing the hernia and re-doing her fundoplication, he had to separate the liver and stomach. Once he did that, he "took down" the hernia and, interestingly enough, found her fundo hadn't slipped, rather was fully intact and shoved up into her chest. He reinforced the fundo, all the while, the surgical assistant holding her liver up with the probes in order to keep his line of vision clear for working. He and his team were exhausted... and he wasn't ashamed to admit it. She was finally rolled out of the OR around 6pm... about three and a half hours after they started.
Our only objective has been to keep Gracie's pain managed and, of course, carefully monitor her vital signs. Her little body has been put through the ringer from this major surgery - not to mention the last two months - and we just want her to rest and heal. Unfortunately, she had tremendous breakthrough pain and, for the first day, needed hourly morphine to stay comfortable. She was also on Ativan, Tylenol and Benadryl (to control the itching from the morphine). It was absolutely heartbreaking to watch her writhe in such agonizing pain. She required a blood transfusion on Thursday. Her chest X-ray mid-day Thursday looked "fuzzy" and today's looked even "fuzzier." She retained a lot of fluid and required an extra dose of IV lasix to try and get rid of it (aside from the twice daily IV lasix she is already on). She required IV albumin because that is low (which has been her trend her whole life, regardless of her nutritional status) as is her prealbumin. She has been running a constant fever of 102 without Tylenol on board. Her CRP and white count are high... the CRP is expected to be high following surgery, however, hers was exceptionally higher today. All of this is pointing toward another respiratory infection. What's so unsettling is that she was so well covered with two broad-spectrum antibiotics for the last ten days. Based on preliminary culture results, they added a new antibiotic today and will make adjustments once the culture has had another 48 hours to grow.
With all that she has going on it becomes more difficult to assess her pain vs. discomfort from what might be brewing. Now that she is 48 hours post-op, we are trying to stagger some of her meds to keep her relaxed and pain free, yet at the same time, not wanting to snow her to the point that we can't really tell how she is. It's a fine balance and exhausting, especially today when she had a day nurse who insisted on questioning both John and me on every thing we asked for and how we're doing things. She was nice enough, but not a great team player and I have already asked the charge nurse that today's nurse not be assigned to Gracie again. (We have only done that two other times in Gracie's entire hospitalization history.) Poor rapport with the nurse just made an already difficult day more challenging. Thankfully, tonight she has Katie, a great nurse, who has taken care of her several times before and whom I was very relieved to see at 7:30 this evening.
Tomorrow they will start clear fluids on a drip through her suspended G-tube at a rate of 10cc an hour. I am so anxious about this as she has been gagging, retching and super junky with her trach secretions all day. I am trying not to pass any judgment about the success of the surgery - - or the new trach size - - until more time has passed and she has a chance to heal, but it's already concerning that her oral and trach secretion production is relatively the same when the docs expected that the combination of these two things should result in a vast improvement. I will be patient, though and let time tell. Please wish our Little Miss luck as she resumes fluids in her tummy for the first time since total gut rest.
Tuesday, August 10, 2010
Hard Core Advocating - Surgery Wednesday 8/11
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.
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.
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.
Subscribe to:
Posts (Atom)
