December 20th: Emmy had more respiratory struggles overnight. In the early morning, the doctor decided to start her on C-pap to see if continuous therapy would improve her lung expansion. Emersyn fought the C-pap the entire time, her respiratory rate went up into the 120s and her retractions worsened from the stress. She didn't stay on the machine long before they decided to discontinue it and put her back on the EZ-pap every 2hrs. Dr Nigro came just before morning rounds and ordered another ECHO to check heart function. The ECHO showed that she was having increased pressure in her right ventricle so she was started on a new medication to decrease that pressure.
Emmy's daily chest x-ray showed the pleural effusion on the right side had worsened overnight so another chest ultrasound was ordered to get a more accurate picture of fluid volume and location. The doctor felt that it was a significant amount and notified me that another chest tube was necessary to drain it. I couldn't believe it...she just seemed to keep getting worse and I was getting very disheartened.
Evening update: I think we've turned a corner (knock on wood)! The second chest tube may have been exactly what she needed to clear the fluid in the lungs and allow her to finally make some headway as far as her respiratory status. Her chest tubes have drained a total of almost 300cc off her lungs. Poor baby probably felt like she was drowning before they were placed...no wonder she was having respiratory distress! She seems much more comfortable now- her respiratory rate has slowed and she has definitely had a drastic decrease in her work of breathing. I feel like we will finally be able to make some forward strides now that the source of her respiratory issues has been diagnosed and appropriately treated. I'm feeling very thankful tonight for this forward progress:)
Friday, December 23, 2011
Tuesday, December 20, 2011
Post-op day #7...1 step forward and 2 steps back
December 19th: Emmy continued to struggle to breathe throughout the night. Her labs are getting worse, indicating that her respiratory status is deteriorating. She will most likely be able to tolerate the increased work of breathing for a short period of time, but it needs to be corrected sooner than later to avoid re-intubation. The EZ-pap respiratory treatment has increased from every 4hrs to every 2hrs and she seems to be tolerating it well, but has shown no significant improvement from it thus far.
Her daily chest x-ray has gotten progressively worse and after a chest ultrasound this morning, the medical team decided she needs a chest tube for drainage of the fluid accumulation. They are placing the tube on the left side where they see the largest pocket. Hopefully, with the fluid drained, she will be able to breathe easier and we will move away from the threat of re-intubation. They are also starting her on Methadone this morning to help her wean off of the narcotics. I am hopeful that this will make her more comfortable and relax her so that she can breathe more deeply.
Evening update: Today was such a stressful day. I just feel so helpless...it breaks my heart to see Emmy struggle every step of the way. The chest tube is draining well, but I haven't seen any improvement in her work of breathing yet. She still has a lot of fluid in her tissues that needs to drain off and that process is slowing down which is frustrating since her improvement seems to be contingent upon that. I get mixed messages from the medical team, some of them continue to tell me she is doing well and recovering as expected, while others share my frustration and say these patients typically make bigger strides sooner.
I do feel that the physicians and nurses listen to my concerns and tailor her care around my requests when possible. I am thankful for their consideration and validation of my role in her recovery. I just keep waiting for the day that she will turn the corner and take off...I expect everyday to be that day, and everyday I'm disappointed. I suppose I would be less discouraged if I changed my way of thinking, but it's natural for a mother to hope for the best for her children. So I will keep hoping and possibly keep being disappointed, but it's better than the alternative of losing that hope.
Her daily chest x-ray has gotten progressively worse and after a chest ultrasound this morning, the medical team decided she needs a chest tube for drainage of the fluid accumulation. They are placing the tube on the left side where they see the largest pocket. Hopefully, with the fluid drained, she will be able to breathe easier and we will move away from the threat of re-intubation. They are also starting her on Methadone this morning to help her wean off of the narcotics. I am hopeful that this will make her more comfortable and relax her so that she can breathe more deeply.
Evening update: Today was such a stressful day. I just feel so helpless...it breaks my heart to see Emmy struggle every step of the way. The chest tube is draining well, but I haven't seen any improvement in her work of breathing yet. She still has a lot of fluid in her tissues that needs to drain off and that process is slowing down which is frustrating since her improvement seems to be contingent upon that. I get mixed messages from the medical team, some of them continue to tell me she is doing well and recovering as expected, while others share my frustration and say these patients typically make bigger strides sooner.
I do feel that the physicians and nurses listen to my concerns and tailor her care around my requests when possible. I am thankful for their consideration and validation of my role in her recovery. I just keep waiting for the day that she will turn the corner and take off...I expect everyday to be that day, and everyday I'm disappointed. I suppose I would be less discouraged if I changed my way of thinking, but it's natural for a mother to hope for the best for her children. So I will keep hoping and possibly keep being disappointed, but it's better than the alternative of losing that hope.
Monday, December 19, 2011
Post-op day #6...today is the day!
December 18th: Well according to the medical team during rounds, today is the day! Big plans for my Emmy girl...the breathing tube is coming out, her continuous drip of pain medicine is being turned off, and she is getting rid of her foley catheter and the central line in her neck. Now the not so good news: her chest x-ray shows quite a bit of excess fluid in the lungs and there is talk of placing chest tubes to drain it. Definitely not what I wanted to hear...we're supposed to be getting rid of lines, not adding new ones! They've ordered another type of chest x-ray that will allow them to more accurately visualize where the fluid is, and a final decision will be made based on that study.
Evening update: We've come so far today! The ET tube, foley, and one of the central lines were removed. She is struggling a little with breathing on her own, and she is now getting a respiratory treatment called EZ-pap, to try to help her inflate her lungs more fully. Her labs show that her pH is high and the doctors say that some of her breathing issues may be the result of a metabolic process taking place in her body from all the diuretics. They changed her diuretic medication and are trying to resolve the issues metabolically before they move to more aggressive respiratory treatments. Worst case scenario, she would have to be re-intubated if her labs and respiratory status don't improve over the next 24hrs. The chest x-ray showed that the fluid is in the tissue surrounding her lungs, not in the lungs themselves so she will just need more time to mobilize that fluid and a chest tube should not be necessary...whew!
A couple other issues arose throughout the day. Emmy had to have a new peripheral IV placed because her medications are not compatible with one another so they can't all be administered through the PICC line in her arm. The continuous drip of pain medicine was turned off and she's been much more irritable today. They tell me that she's not in pain from the surgery, and that she's probably just worked up from her respiratory instability and the resulting shifts in her blood composition. The breathing tube was in for several days and most likely caused some irritation to her throat, so that may also be a contributing factor. In addition, the doctors have discussed with me the possibility that she is withdrawing from the pain medication. She was on the Fentanyl drip for 6 days and may have built up some dependence to it. The nurses are now doing abstinence scoring on her every 4 hrs and based on those results, they will decide tomorrow whether or not to start methadone to help wean her off the narcotics. Such a roller-coaster ride we're on...2 steps forward and 1 step back each day! It is very easy to get caught up in the daily struggles and forget how far she's come in just one week...she really is a remarkable little girl!
Evening update: We've come so far today! The ET tube, foley, and one of the central lines were removed. She is struggling a little with breathing on her own, and she is now getting a respiratory treatment called EZ-pap, to try to help her inflate her lungs more fully. Her labs show that her pH is high and the doctors say that some of her breathing issues may be the result of a metabolic process taking place in her body from all the diuretics. They changed her diuretic medication and are trying to resolve the issues metabolically before they move to more aggressive respiratory treatments. Worst case scenario, she would have to be re-intubated if her labs and respiratory status don't improve over the next 24hrs. The chest x-ray showed that the fluid is in the tissue surrounding her lungs, not in the lungs themselves so she will just need more time to mobilize that fluid and a chest tube should not be necessary...whew!
A couple other issues arose throughout the day. Emmy had to have a new peripheral IV placed because her medications are not compatible with one another so they can't all be administered through the PICC line in her arm. The continuous drip of pain medicine was turned off and she's been much more irritable today. They tell me that she's not in pain from the surgery, and that she's probably just worked up from her respiratory instability and the resulting shifts in her blood composition. The breathing tube was in for several days and most likely caused some irritation to her throat, so that may also be a contributing factor. In addition, the doctors have discussed with me the possibility that she is withdrawing from the pain medication. She was on the Fentanyl drip for 6 days and may have built up some dependence to it. The nurses are now doing abstinence scoring on her every 4 hrs and based on those results, they will decide tomorrow whether or not to start methadone to help wean her off the narcotics. Such a roller-coaster ride we're on...2 steps forward and 1 step back each day! It is very easy to get caught up in the daily struggles and forget how far she's come in just one week...she really is a remarkable little girl!
Post-op day #6 with the breathing tube finally out,
still swollen but making huge improvements!
Post-op day #5...you guessed it...weaning the ventilator
December 17th: Today the plan is to continue weaning the ventilator and hopefully remove the endotracheal tube :) Happy, happy day...I can't wait to hold my baby again! They also hope to wean her off of her Milrinone, which is the last of her cardiac meds. By the end of the day, we hope to be down to just a couple IV meds- TPN and lipids for nutrition and lasix to continue her diuresis. They also plan to change her pain medication to a PRN, or as needed medicine, instead of a continuous drip...each medicine they discontinue is a small win for Emmy, and a step closer to home!
Evening update: All did not go as planned and I'm feeling very defeated today. Emmy still has too much excess fluid on the lungs to be able to tolerate being off the ventilator, so obviously she could not be extubated. She did get an additional diuretic to increase her urine output, so hopefully by tomorrow, enough fluid will have drained off that she can finally have the breathing tube removed. I feel like we have the same goals everyday but are never able to accomplish them and it's very frustrating.
On a more positive note, the Milrinone was discontinued today and the Fentanyl drip was weaned down. The pain medicine wasn't turned completely off because she is still intubated which undoubtedly causes some discomfort. For now I'm just hoping that tomorrow will be a more productive day.
Evening update: All did not go as planned and I'm feeling very defeated today. Emmy still has too much excess fluid on the lungs to be able to tolerate being off the ventilator, so obviously she could not be extubated. She did get an additional diuretic to increase her urine output, so hopefully by tomorrow, enough fluid will have drained off that she can finally have the breathing tube removed. I feel like we have the same goals everyday but are never able to accomplish them and it's very frustrating.
On a more positive note, the Milrinone was discontinued today and the Fentanyl drip was weaned down. The pain medicine wasn't turned completely off because she is still intubated which undoubtedly causes some discomfort. For now I'm just hoping that tomorrow will be a more productive day.
Saturday, December 17, 2011
Post-op day #4...weaning the ventilator...again
December 16th: Our goals for today are to re-attempt to wean the vent settings, to continue diuresis, and to wean her Epinephrine- another cardiac medication. I know this seems like a repeat of yesterday's post...it feels kinda like the movie Groundhog Day! Hopefully today will be more successful. Emersyn was able to drop quite a bit of fluid in the last 24hrs, her weight is down almost a whole pound...but she still has a long way to go, another 2 pounds of fluid is still sitting in her tissues. The swelling looks slightly better, but still horribly uncomfortable. The doctors tell me it will take days to get the fluid off at the rate she is going. In addition, the excess fluid has leaked into her lungs and caused pleural effusions on both sides so now she has that to contend with while trying to breathe independently. I really don't know how this poor baby can possibly be strong enough for this, but she makes improvements and continues to amaze me each day.
Evening update: The vent settings were weaned several times throughout the day, but Emmy never made it back to the "auto mode" which requires her to do all of her breathing on her own. The settings will continue to be weaned overnight so that hopefully tomorrow morning they will be able to put her back into auto mode in preparation for extubation. The Epinephrine was discontinued today, so she now has 1 less IV line and pump! They were able to start her on feeds through a tube in her nose. For now, the rate is very slow and increases by only 1cc every 6 hours. The goal is just to prime the the GI tract for full feeds later on, and Emmy is tolerating it very well. Her Fentanyl drip (pain medication) was lowered to allow her to be more awake and hopefully do more breathing on her own. She does occasionally seem to be in pain and require extra medicine to calm back down, but the nursing staff is quick to respond when she shows signs of discomfort. The team continues to tell me that she is doing well and making excellent strides toward recovery. I am happy with her progress, but as always wish that our goals could be met faster!!!
Evening update: The vent settings were weaned several times throughout the day, but Emmy never made it back to the "auto mode" which requires her to do all of her breathing on her own. The settings will continue to be weaned overnight so that hopefully tomorrow morning they will be able to put her back into auto mode in preparation for extubation. The Epinephrine was discontinued today, so she now has 1 less IV line and pump! They were able to start her on feeds through a tube in her nose. For now, the rate is very slow and increases by only 1cc every 6 hours. The goal is just to prime the the GI tract for full feeds later on, and Emmy is tolerating it very well. Her Fentanyl drip (pain medication) was lowered to allow her to be more awake and hopefully do more breathing on her own. She does occasionally seem to be in pain and require extra medicine to calm back down, but the nursing staff is quick to respond when she shows signs of discomfort. The team continues to tell me that she is doing well and making excellent strides toward recovery. I am happy with her progress, but as always wish that our goals could be met faster!!!
Friday, December 16, 2011
Post-op day #3...weaning the ventilator
December 15th: Every day I attend the medical team's morning rounds so that I can hear their perceptions on Emmy's progress and what they plan to accomplish for the day. Today, the goal is to wean her from the ventilator. This morning, the settings on the vent were changed to allow Emersyn to initiate all of her breathing on her own. The breathing tube is still in place and the vent is still hooked up, so if she doesn't take a breath for more than 12 seconds the machine will breathe for her. So far, so good...she is doing all of her own breathing- BIG stride for such a sick little girl!
The ICU doctor says he doubts she will be able to be extubated today because she is still so swollen. The excess fluid in her chest and on her lungs will make breathing on her own more difficult, so for now it is better to have the ET tube in just in case she needs some respiratory support. He anticipates that the tube will be able to be removed tomorrow. That's great news for me because when the ET tube comes out, Emmy can be held again...fingers crossed that tomorrow will be the day!
Evening update: The day is almost over and I'm sad to say, we've made little progress. Although she is putting out more than adequate amounts of urine, Emmy's swelling looks worse than ever. Her head has become so swollen that her ears can no longer lay flat...instead they stick straight out to the sides. Her head, torso, and perineum are swollen to the point that her skin is tight and firm to the touch. It just looks so uncomfortable. The medical team discussed adding a second diuretic several times today, but ultimately they came to the decision not to change her medication regimen because of her lab work. Her BUN and creatinine levels have been slightly elevated indicating that her kidneys are working pretty hard so they fear that adding another diuretic would overload her kidneys.
The ventilator weaning went well during the day. Emmy remained in the "auto" mode all day, which means she was doing all the work. Unfortunately, this evening, as she is sleeping more deeply, she is needing more support so the vent settings were changed to give her some additional assistance. The respiratory therapist told Bryan and I that she most likely will not be extubated until Saturday or Sunday. So once again, we are playing the waiting game...agonizing, but we are doing our best to remain optimistic!
Our one big win for the day: Emersyn was taken off of the Dopamine. Hemodynamically, she has become more stable and her blood pressure is trending upward so they were able to discontinue one of her BP medications...yay, anytime we can get rid of a something, we consider it a WIN!
The ICU doctor says he doubts she will be able to be extubated today because she is still so swollen. The excess fluid in her chest and on her lungs will make breathing on her own more difficult, so for now it is better to have the ET tube in just in case she needs some respiratory support. He anticipates that the tube will be able to be removed tomorrow. That's great news for me because when the ET tube comes out, Emmy can be held again...fingers crossed that tomorrow will be the day!
Evening update: The day is almost over and I'm sad to say, we've made little progress. Although she is putting out more than adequate amounts of urine, Emmy's swelling looks worse than ever. Her head has become so swollen that her ears can no longer lay flat...instead they stick straight out to the sides. Her head, torso, and perineum are swollen to the point that her skin is tight and firm to the touch. It just looks so uncomfortable. The medical team discussed adding a second diuretic several times today, but ultimately they came to the decision not to change her medication regimen because of her lab work. Her BUN and creatinine levels have been slightly elevated indicating that her kidneys are working pretty hard so they fear that adding another diuretic would overload her kidneys.
The ventilator weaning went well during the day. Emmy remained in the "auto" mode all day, which means she was doing all the work. Unfortunately, this evening, as she is sleeping more deeply, she is needing more support so the vent settings were changed to give her some additional assistance. The respiratory therapist told Bryan and I that she most likely will not be extubated until Saturday or Sunday. So once again, we are playing the waiting game...agonizing, but we are doing our best to remain optimistic!
Our one big win for the day: Emersyn was taken off of the Dopamine. Hemodynamically, she has become more stable and her blood pressure is trending upward so they were able to discontinue one of her BP medications...yay, anytime we can get rid of a something, we consider it a WIN!
Thursday, December 15, 2011
Post-op day #2...the road to recovery
Wednesday, December 14th, was when Emmy seemed to turn things around and start making progress. Her kidneys started working again and she began making urine which would eventually drain off the excess fluid that had collected in her tissues. Her labs and vital signs all improved and they were able to start weaning some of her cardiac medications. Her surgeon removed her chest tube and took the surgical dressing off of her incision...ugh, the incision. From this day on, her scar will be visible every day of her life.
I have mixed feelings looking at her chest. The scar is ugly and no mother wants her daughter to live with scars...I think prom dresses, bathing suits, tank tops, etc. It will probably not be very easily hidden so she will constantly be asked what happened, and that makes me sad for her. On the other hand, this scar is from a surgery that allowed our baby to live, so while I hate looking at it, I am also tremendously thankful for it. I know that it will fade and we will become used to it, and I hope those days come sooner than later. In time, I hope to look at her scar and see it as something beautiful...that is what I hope to teach her to feel when she looks at it. My wish for her is that she will not be embarrassed, but instead be confident and proud of the scar on her chest and the opportunity it gave her to live a full and happy life.
I have mixed feelings looking at her chest. The scar is ugly and no mother wants her daughter to live with scars...I think prom dresses, bathing suits, tank tops, etc. It will probably not be very easily hidden so she will constantly be asked what happened, and that makes me sad for her. On the other hand, this scar is from a surgery that allowed our baby to live, so while I hate looking at it, I am also tremendously thankful for it. I know that it will fade and we will become used to it, and I hope those days come sooner than later. In time, I hope to look at her scar and see it as something beautiful...that is what I hope to teach her to feel when she looks at it. My wish for her is that she will not be embarrassed, but instead be confident and proud of the scar on her chest and the opportunity it gave her to live a full and happy life.
Post-op day #2 brought lots of progress...
chest tube out and surgical dressing removed.
Wednesday, December 14, 2011
Daily struggles in the post-op period
The night following Emersyn's surgery was hard. Her blood pressure was low so she was frequently getting blood transfusions, albumin, and plasmalyte to increase her fluid volume. They were also concerned because she had stopped making urine when she was in surgery and had not restarted yet. Since she wasn't voiding, the more fluid they gave her, the more her tissue swelled. She was getting pretty puffy and that was problematic. Since her chest was fully closed in the OR, there was little room for swelling before the heart would be compressed. With the amount of swelling Emersyn was experiencing, this became a concern. In addition, her lactic acid levels were on the rise. Lactic acid is produced when muscles are overworked, so the medical team was worried that her heart was being overly stressed and not functioning properly.
Around 3am, the surgeon ordered an ECHO to look for cardiac edema and check her overall function and perfusion of the heart muscle itself. They were able to visualize some fluid around the heart which was not abnormal considering her extreme swelling. They also said the heart was slightly under filled which indicated that the extra fluid in her chest cavity was compressing the heart muscle to some extent. The heart was functioning well though, and there was no concern of leaking at the surgical sites or cardiac perfusion issues. Unfortunately, her lactic acid levels continued to rise and she still was not producing urine, so the waiting game continued.
By 8:30 am December 13th, her lactic acid level was finally starting to decrease which was a positive sign, still no urine though so kidney function became the big concern for the day. Emmy was almost 24 hours with very little urine output...less than 50cc. Her blood pressure was still low so they were continuing to give volume boluses frequently and she continued to swell more and more. Early in the afternoon, one of the doctors approached me to explain that if she continued like this, peritoneal dialysis would be required to drain off some of the fluid and continue giving her kidneys time to recover. Ugh...I hated the sound of that, but I had incredible confidence in the medical team and never once questioned their decision making. I knew they would do what was necessary to keep our little girl on the path to recovery.
That night was more of the same...no urine. Her blood pressure was improving though so that was a positive sign. The decision about dialysis would be made at morning rounds, around 8:30am. I think we had an army of people praying that this little girl would pee! And thankfully, those prayers were heard. Around 4am on December 14th, her second post-op day, Emersyn finally started producing urine. I had never been so excited about pee before and I doubt I ever will be again! By morning rounds, the doctors said they were confident she would not need dialysis. She still looked horrible...looking at her made me cry. She had 2 days worth of fluids collected in her tissues and she looked like a balloon ready to pop. It was a very ugly picture and I hated seeing her like this, but I knew that she was improving now even if I couldn't see it yet...and that was comforting.
This brings us up to date. Happier pictures to follow, I promise...she just needs more time! I'm told by all of the medical team that she's doing amazing considering the operation she's undergone. This is how it is in the medical world...everyone wants to see more progress faster. But Emmy is already showing us that she is a girl who won't be rushed...she is very strong and fighting hard, but she will do things in her own time!
Around 3am, the surgeon ordered an ECHO to look for cardiac edema and check her overall function and perfusion of the heart muscle itself. They were able to visualize some fluid around the heart which was not abnormal considering her extreme swelling. They also said the heart was slightly under filled which indicated that the extra fluid in her chest cavity was compressing the heart muscle to some extent. The heart was functioning well though, and there was no concern of leaking at the surgical sites or cardiac perfusion issues. Unfortunately, her lactic acid levels continued to rise and she still was not producing urine, so the waiting game continued.
By 8:30 am December 13th, her lactic acid level was finally starting to decrease which was a positive sign, still no urine though so kidney function became the big concern for the day. Emmy was almost 24 hours with very little urine output...less than 50cc. Her blood pressure was still low so they were continuing to give volume boluses frequently and she continued to swell more and more. Early in the afternoon, one of the doctors approached me to explain that if she continued like this, peritoneal dialysis would be required to drain off some of the fluid and continue giving her kidneys time to recover. Ugh...I hated the sound of that, but I had incredible confidence in the medical team and never once questioned their decision making. I knew they would do what was necessary to keep our little girl on the path to recovery.
That night was more of the same...no urine. Her blood pressure was improving though so that was a positive sign. The decision about dialysis would be made at morning rounds, around 8:30am. I think we had an army of people praying that this little girl would pee! And thankfully, those prayers were heard. Around 4am on December 14th, her second post-op day, Emersyn finally started producing urine. I had never been so excited about pee before and I doubt I ever will be again! By morning rounds, the doctors said they were confident she would not need dialysis. She still looked horrible...looking at her made me cry. She had 2 days worth of fluids collected in her tissues and she looked like a balloon ready to pop. It was a very ugly picture and I hated seeing her like this, but I knew that she was improving now even if I couldn't see it yet...and that was comforting.
Post-op day #1
Post-op day #2
This brings us up to date. Happier pictures to follow, I promise...she just needs more time! I'm told by all of the medical team that she's doing amazing considering the operation she's undergone. This is how it is in the medical world...everyone wants to see more progress faster. But Emmy is already showing us that she is a girl who won't be rushed...she is very strong and fighting hard, but she will do things in her own time!
The Arterial Switch Procedure
Emersyn had her switch procedure on December 12th. She went to the OR at 7:30am and it was absolutely heart breaking allowing them to take her away. Even though this procedure has a 98% success rate, there are plenty of risks- the worst of which obviously being infant death. No matter how much you try not to think about that, it is impossible to let your child go without the thought that they may not return crossing your mind...such a horrible thought.
The OR nurse told us that he would come out occasionally to update us on Emmy's status, so we waited in the surgical waiting room for hours. Around 9:30, the nurse came out to let us know that all of the lines were in and she had been placed on cardiac bypass. The surgeon, Dr Nigro, was preparing to start the repair. We were told that it would be at least a couple hours before we would be updated again.
At 12:00pm, the nurse came back out and said that the repair had been successful and that they would be taking her off bypass soon. After she was removed from bypass, Dr Nigro would keep her chest open for a while to monitor for bleeding at the surgical sites. Sternum closure would be very slow to ensure that the bleeding was controlled and her heart was not going to swell too much for full closure.
After surgery, Emersyn would go directly back to her ICU room for recovery. We were told to wait in the CVICU waiting room and that the nurse would call us back to the room once they had her settled and we were able to see her. Dr Nigro came to update us in the waiting room with all good news. The surgery had been "a textbook switch procedure" and everything had gone perfectly. He had been able to close her chest completely which we were thankful for. He said that we should be able to see her within the next 20min...feelings of relief and anxiety to see her swept over us.
An hour later, we were brought back into her room. There were several doctors and nurses surrounding her little warmer so Bryan and I just sat on the couch and stayed out of the way. Everyone was busy...doing 5 or 6 jobs it seemed, but it was very well coordinated- a controlled chaos. Emersyn was bleeding from her chest, and they were unable to determine where it was coming from. After a call to her surgeon, he showed up at the bedside, and removed her surgical dressing. She had pacing leads that went through her skin and were stitched directly to the heart to be used in case of an emergency. The blood was coming from one of the pacing wire sites. Dr Nigro stitched the site closed and covered it with surgical glue, then redressed her incision...nothing to be concerned about, thankfully.
When we got our first look at our baby, it took our breath away. She was covered head to toe with lines and tubes and leads. She was nasally intubated and on a ventilator to help her breathe. She had a nasogastric tube in the other nostril which was hooked up to suction to remove gastric secretions from her stomach. She had a midline chest incision that went from about an inch above nipple line to 2 inches below. She had a chest tube just below her dressing to drain excess fluid from around the heart. The pacing leads were coming from the right and left sides of her chest. She had a foley catheter in to drain her bladder, and a rectal probe which constantly measured her temperature. Then there were the IV sites: 2 central lines- one coming from the right side of her neck and the other in her right arm. An arterial line had been placed in her left arm and a peripheral IV in her right foot. As far as medications, she was on dopamine, epinephrine, and milrinone to stabilize her blood pressure and heart function, hydrocortisone and T3 also for stabilization, fentanyl for pain, TPN and lipids for nutrition, clindamycin and ancef to prevent post surgical infection, and heparinized IV fluids.
The picture was horrifying but the medical team gave us consistent reassurance that she was doing well.
The OR nurse told us that he would come out occasionally to update us on Emmy's status, so we waited in the surgical waiting room for hours. Around 9:30, the nurse came out to let us know that all of the lines were in and she had been placed on cardiac bypass. The surgeon, Dr Nigro, was preparing to start the repair. We were told that it would be at least a couple hours before we would be updated again.
At 12:00pm, the nurse came back out and said that the repair had been successful and that they would be taking her off bypass soon. After she was removed from bypass, Dr Nigro would keep her chest open for a while to monitor for bleeding at the surgical sites. Sternum closure would be very slow to ensure that the bleeding was controlled and her heart was not going to swell too much for full closure.
After surgery, Emersyn would go directly back to her ICU room for recovery. We were told to wait in the CVICU waiting room and that the nurse would call us back to the room once they had her settled and we were able to see her. Dr Nigro came to update us in the waiting room with all good news. The surgery had been "a textbook switch procedure" and everything had gone perfectly. He had been able to close her chest completely which we were thankful for. He said that we should be able to see her within the next 20min...feelings of relief and anxiety to see her swept over us.
An hour later, we were brought back into her room. There were several doctors and nurses surrounding her little warmer so Bryan and I just sat on the couch and stayed out of the way. Everyone was busy...doing 5 or 6 jobs it seemed, but it was very well coordinated- a controlled chaos. Emersyn was bleeding from her chest, and they were unable to determine where it was coming from. After a call to her surgeon, he showed up at the bedside, and removed her surgical dressing. She had pacing leads that went through her skin and were stitched directly to the heart to be used in case of an emergency. The blood was coming from one of the pacing wire sites. Dr Nigro stitched the site closed and covered it with surgical glue, then redressed her incision...nothing to be concerned about, thankfully.
When we got our first look at our baby, it took our breath away. She was covered head to toe with lines and tubes and leads. She was nasally intubated and on a ventilator to help her breathe. She had a nasogastric tube in the other nostril which was hooked up to suction to remove gastric secretions from her stomach. She had a midline chest incision that went from about an inch above nipple line to 2 inches below. She had a chest tube just below her dressing to drain excess fluid from around the heart. The pacing leads were coming from the right and left sides of her chest. She had a foley catheter in to drain her bladder, and a rectal probe which constantly measured her temperature. Then there were the IV sites: 2 central lines- one coming from the right side of her neck and the other in her right arm. An arterial line had been placed in her left arm and a peripheral IV in her right foot. As far as medications, she was on dopamine, epinephrine, and milrinone to stabilize her blood pressure and heart function, hydrocortisone and T3 also for stabilization, fentanyl for pain, TPN and lipids for nutrition, clindamycin and ancef to prevent post surgical infection, and heparinized IV fluids.
The picture was horrifying but the medical team gave us consistent reassurance that she was doing well.
Our first post-op picture of Emmy...poor baby :(
A glimpse of the setting...9 IV pumps, a ventilator, and lots of monitors.
Tuesday, December 13, 2011
Our first days at Phoenix Children's
From a medical standpoint, our first days at Phoenix Children's Hospital were uneventful, but to me and Bryan they were pretty important. Emersyn was stable and doing well considering her heart defect. The doctor allowed us to start trying to breastfeed, but she had difficulty latching and was easily tired out when trying. The physician and I came to the decision to place an NG tube and start feedings that way. It wasn't the ideal situation but it would allow us to get something into her little tummy which would hopefully comfort her a little.
The CVICU staff was wonderful about promoting bonding between the infant and parents. They were cautious about holding, but felt that the benefits of allowing us to hold our little girl outweighed the risk of dislodging the umbilical lines, so with the nurse's assistance we were allowed to hold Emmy as much as we wanted- which was most of the time! It was amazing how much more stable her vitals were when she was held...what this meant to me: less dinging and beeping from all of the equipment she was hooked up to! She would sleep on my chest through hours of the night, and that was when both of us got the most rest.
A close up of Emmy, wide awake with her NG tube in.
The sticker on her forehead was used to measure her cerebral
oxygen level. Her eyes and face are pretty puffy here from all of the fluids
she was getting to stay nourished and hydrated.
Emmy finally got her first bath,
and she was not at all happy about it!
The CVICU staff was wonderful about promoting bonding between the infant and parents. They were cautious about holding, but felt that the benefits of allowing us to hold our little girl outweighed the risk of dislodging the umbilical lines, so with the nurse's assistance we were allowed to hold Emmy as much as we wanted- which was most of the time! It was amazing how much more stable her vitals were when she was held...what this meant to me: less dinging and beeping from all of the equipment she was hooked up to! She would sleep on my chest through hours of the night, and that was when both of us got the most rest.
Daddy and Em got to share their first football Sunday together.
Bryan kicked back in the recliner holding his girl while she slept the day away:)
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