So we're back in the CCU! Since we've been gone they've upgraded the rooms with new all-in-one computers and televisions. We are back in the same room we were after Aurelia came back from her first PICC line, when her airway first collapsed and the NEC watch sent us back to the CICU. I don't mind this case of deja vu if it means we get to come back to the CCU instead of leaving for some place a little more urgent.
In sadder news one of our housemates, a wonderfully nice family from New Jersey, lost their CHD baby, Luawn, last night. She had a defect very similar to Aurelia's and unfortunately developed a secondary problem that resulted in her heart's ventricles never fully relaxing. As a result her heart couldn't fill itself with enough oxygenated blood between beats. Her folks got the call around two o'clock a.m. and when they arrived they removed all the tubes from Luawn's body and she rested peacefully in her mother's arms until she passed away.
It's a tough reminder about the dangers of a CHD when you see so many of these babies that fight just as hard as Aurelia lose their battles. We can only hope that what afflicts Aurelia cannot match her own determination and strength. When combined with the skill of this amazing medical team we have faith that our girl will give this fight all the will she can in order to live a full and healthy life.
Still, things over here are much better for our little A. She's off oxygen and the high flow and is only on a room air canula. She had a little gas this evening and so was a bit fussy, but our awesome nurse Laura (who has been nothing short of magical) takes such good care of her that with only a burp and some anti-gas medication our little girl is sleeping soundly.
we hope that the news about the NEC watch continues to be good and that after the treatment course ends Tuesday we'll get good news about a surgery schedule for Aurelia's hernia, nissen, and g-tube.
One last note - Grandma Dittrich left today for Connecticut after a two week stay and her help was invaluable. She took great care of Madison and Jillian, and poured out love on Aurelia. Madison is voicing all the words Grandma taught her and loved taking walks around the city with her Grandma. They read so many wonderful books together down in the play room and it was the first time in some time that all the wash was up to date and the room here at the house was clean.
We will all miss her much! Grandma and Grandpa DeAlessio arrive some time today barring any misfortune on the roadways, and we hope they make it here safe, sound, and in a timely fashion!
Showing posts with label NEC. Show all posts
Showing posts with label NEC. Show all posts
Sunday, November 28, 2010
Wednesday, November 24, 2010
The world shifted and someone forgot to tell us
As many of you know from our facebook updates, text messages, and phone calls, we are back in the intensive care unit. Here's today's tale as best I can remember it:
I got up at 4:30 this morning and went into the bathroom. I planned on taking a shower and driving to work from Philly this morning. I wanted to spend as much time with the girls as I could and Madison has been having a good number of Daddy-days this week and I planned to take advantage of that all I could. I stepped out of the shower, toweled off, dressed, etc., and stepped out of the bathroom to hear Jillian on the phone.
Dr. Jansen had called from the CCU; Aurelia was on her way back to the CICU with the approval of our current attending, Dr. O'Connor. Jillian absorbed all Dr. Jansen told her with magnificent clarity. She told me that after we left Aurelia last evening she never really settled down to sleep. Problems escalated through the evening and combined they led to the decision to intervene and change the level of her care.
Yesterday afternoon Aurelia had a procedure to drop her feeding tube from her duodenum (which had been operated on during her first day of life) to a spot further in her intestine. We hoped to increase her comfort over the next week as we prepared for a g-tube by lessening her reflux, gagging, and spit-up. The procedure took over an hour and reportedly gave the people in Interventional Radiology quite a challenge. As a side note, Dr. O'Connor is disturbed by this and is investigating why a relatively simple procedure became so difficult.
Aurelia took to her feeds after the procedure well and returned to full feeds by the time Jillian and I returned to the Ronald McDonald House. A constantly elevated heart rate of 180 gave the team some concern, but Aurelia had a very long afternoon and we thought with rest she would eventually calm down. Between when we left at 5:00 p.m. and when we got the call at 4:00 a.m. Aurelia's condition worsened instead of improved. Her heart rate never dropped and as the evening wore on she became increasingly uncomfortable. They stopped her feeds and ordered an x-ray.
Around 1:00 a.m. they got the first film back and it showed possible evidence of necrotizing enterocolitis. That's right, NEC had returned; or at least it might have. To be sure, the team ordered another film and restarted Aurelia's feeds until they could be positive that a NEC watch would be appropriate. As the feeds began again Aurelia became more distressed. Her heart rate remained elevated and her respiratory rate climbed.
The second film, taken around 3 a.m., revealed evidence of pneumatosis, or gas cysts in the intestinal wall. At that point the wheels began to turn and they started the process of another transfer to the CICU. Aurelia became increasingly troubled as phlebotomy struggled to find a vein for an IV. They found one, she went NPO (pre-operative fasting, or removal of all food and supplement with fluids only) and the transfer was completed about fifteen minutes before our arrival here at 5:10 a.m.
At this point today's tale becomes more disconcerting to Jillian and me. Her nurse here from 5 to 7 a.m. seemed competent and worked with us as Aurelia was stuck for labs, lined up for another x-ray, and scheduled for a second IV. Apparently her heart's hard work during the previous twelve to fourteen hours had 'chewed up' some of her platelets and she needed a transfusion to maintain optimum blood count. This transfusion would require a second IV. Rightfully so, Jillian and I hesitated over this course of action and expressed concerns at the duress IV attempts always caused Aurelia. While a simple procedure, IV placement takes so long and requires so much stress for her that we felt this a bad idea. The need for her to maintain an optimal blood count won out, however, and the IV plan went forward.
We didn't express these concerns lightly; Aurelia's tracheal malasia flares up when under physical stress and she had weakened herself with 12+ hours of 180 bpm of heart racing exhaustion and crying. Add to that her vocal cord paresis and we felt that additional trauma at this point in the morning would not serve her best. We left to get something to eat and when we returned we found Aurelia with a blood soaked right foot, blood on her bedding, and her face strapped to a CPAP machine.
It felt like someone had rotated the earth a half turn and left us standing stock still. Our girl had been fine the day before; we even got permission to start taking her on stroller trips around the hospital! We had rigged her crib with visual stimulation, her OT exercises were going wonderfully, and for the first time we really felt as if the end was near. All we had to do was get that g-tube in, get trained, and one week later we would be home. Now our daughter's hypersensitivity is in overload thanks to the ridiculous CPAP, with sedation and anti-anxiety medication the only things keeping her from lashing out over hunger and the harness, she's on 6L of 30% oxygen, two IV's in her, a blood transfusion completed, NEC invading her bowels, getting x-rays every six hours, and belly measurements every four. To top it off, the bungled second IV and transfusion fiasco so upset Aurelia that her airway completely collapsed, her oxygen saturation dropped to the 40s from the low 90s, and her heart rate plummeted from 180 bpm + to 80. They had to manually pump her oxygen to keep her heart beating and her blood saturated until the CPAP could be hooked up.
I still don't know how we got here. What a vicious reminder of how precarious Aurelia's health is, even as we prepare to leave here in the coming months. I'm scared of what the future will hold for her, as much as we love her, as we struggle to keep her well and alive. Our immediate next steps include scheduling a PICC line for Friday in a sterile environment, monitoring the pnematosis on the regular x-rays, pump her full of a broad spectrum antibiotic cannonade against the NEC over the next seven days, ween her off the CPAP machine, and get her strong enough to endure a three-fold surgery scheduled for late next week.
General surgery came in to see her and their assessment is another open body surgery to repair Aurelia's hernia, insert the g-tube, and conduct a nissen fundoplication. I'll post more on the other issues and concerns in upcoming posts, but that's where we stand now. We're being booted from the CICU while they bring another baby back from surgery, so we're going to dine with Madison for dinner and then visit with her for the pet-therapy dogs that come to the Ronald McDonald House every Wednesday. We'll be back here tonight I'm sure.
We'll keep you posted as best we can and thank you to everyone for your positive thoughts, well wishes, offers of help, and prayers. You are the strength that keeps us going.
I got up at 4:30 this morning and went into the bathroom. I planned on taking a shower and driving to work from Philly this morning. I wanted to spend as much time with the girls as I could and Madison has been having a good number of Daddy-days this week and I planned to take advantage of that all I could. I stepped out of the shower, toweled off, dressed, etc., and stepped out of the bathroom to hear Jillian on the phone.
Dr. Jansen had called from the CCU; Aurelia was on her way back to the CICU with the approval of our current attending, Dr. O'Connor. Jillian absorbed all Dr. Jansen told her with magnificent clarity. She told me that after we left Aurelia last evening she never really settled down to sleep. Problems escalated through the evening and combined they led to the decision to intervene and change the level of her care.
Yesterday afternoon Aurelia had a procedure to drop her feeding tube from her duodenum (which had been operated on during her first day of life) to a spot further in her intestine. We hoped to increase her comfort over the next week as we prepared for a g-tube by lessening her reflux, gagging, and spit-up. The procedure took over an hour and reportedly gave the people in Interventional Radiology quite a challenge. As a side note, Dr. O'Connor is disturbed by this and is investigating why a relatively simple procedure became so difficult.
Aurelia took to her feeds after the procedure well and returned to full feeds by the time Jillian and I returned to the Ronald McDonald House. A constantly elevated heart rate of 180 gave the team some concern, but Aurelia had a very long afternoon and we thought with rest she would eventually calm down. Between when we left at 5:00 p.m. and when we got the call at 4:00 a.m. Aurelia's condition worsened instead of improved. Her heart rate never dropped and as the evening wore on she became increasingly uncomfortable. They stopped her feeds and ordered an x-ray.
Around 1:00 a.m. they got the first film back and it showed possible evidence of necrotizing enterocolitis. That's right, NEC had returned; or at least it might have. To be sure, the team ordered another film and restarted Aurelia's feeds until they could be positive that a NEC watch would be appropriate. As the feeds began again Aurelia became more distressed. Her heart rate remained elevated and her respiratory rate climbed.
The second film, taken around 3 a.m., revealed evidence of pneumatosis, or gas cysts in the intestinal wall. At that point the wheels began to turn and they started the process of another transfer to the CICU. Aurelia became increasingly troubled as phlebotomy struggled to find a vein for an IV. They found one, she went NPO (pre-operative fasting, or removal of all food and supplement with fluids only) and the transfer was completed about fifteen minutes before our arrival here at 5:10 a.m.
At this point today's tale becomes more disconcerting to Jillian and me. Her nurse here from 5 to 7 a.m. seemed competent and worked with us as Aurelia was stuck for labs, lined up for another x-ray, and scheduled for a second IV. Apparently her heart's hard work during the previous twelve to fourteen hours had 'chewed up' some of her platelets and she needed a transfusion to maintain optimum blood count. This transfusion would require a second IV. Rightfully so, Jillian and I hesitated over this course of action and expressed concerns at the duress IV attempts always caused Aurelia. While a simple procedure, IV placement takes so long and requires so much stress for her that we felt this a bad idea. The need for her to maintain an optimal blood count won out, however, and the IV plan went forward.
We didn't express these concerns lightly; Aurelia's tracheal malasia flares up when under physical stress and she had weakened herself with 12+ hours of 180 bpm of heart racing exhaustion and crying. Add to that her vocal cord paresis and we felt that additional trauma at this point in the morning would not serve her best. We left to get something to eat and when we returned we found Aurelia with a blood soaked right foot, blood on her bedding, and her face strapped to a CPAP machine.
It felt like someone had rotated the earth a half turn and left us standing stock still. Our girl had been fine the day before; we even got permission to start taking her on stroller trips around the hospital! We had rigged her crib with visual stimulation, her OT exercises were going wonderfully, and for the first time we really felt as if the end was near. All we had to do was get that g-tube in, get trained, and one week later we would be home. Now our daughter's hypersensitivity is in overload thanks to the ridiculous CPAP, with sedation and anti-anxiety medication the only things keeping her from lashing out over hunger and the harness, she's on 6L of 30% oxygen, two IV's in her, a blood transfusion completed, NEC invading her bowels, getting x-rays every six hours, and belly measurements every four. To top it off, the bungled second IV and transfusion fiasco so upset Aurelia that her airway completely collapsed, her oxygen saturation dropped to the 40s from the low 90s, and her heart rate plummeted from 180 bpm + to 80. They had to manually pump her oxygen to keep her heart beating and her blood saturated until the CPAP could be hooked up.
I still don't know how we got here. What a vicious reminder of how precarious Aurelia's health is, even as we prepare to leave here in the coming months. I'm scared of what the future will hold for her, as much as we love her, as we struggle to keep her well and alive. Our immediate next steps include scheduling a PICC line for Friday in a sterile environment, monitoring the pnematosis on the regular x-rays, pump her full of a broad spectrum antibiotic cannonade against the NEC over the next seven days, ween her off the CPAP machine, and get her strong enough to endure a three-fold surgery scheduled for late next week.
General surgery came in to see her and their assessment is another open body surgery to repair Aurelia's hernia, insert the g-tube, and conduct a nissen fundoplication. I'll post more on the other issues and concerns in upcoming posts, but that's where we stand now. We're being booted from the CICU while they bring another baby back from surgery, so we're going to dine with Madison for dinner and then visit with her for the pet-therapy dogs that come to the Ronald McDonald House every Wednesday. We'll be back here tonight I'm sure.
We'll keep you posted as best we can and thank you to everyone for your positive thoughts, well wishes, offers of help, and prayers. You are the strength that keeps us going.
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