That's right, folks, that's the sound I make when the other shoe hits me square in the noggin. So far the other shoe appears to be something light, a ballet slipper perhaps, as opposed to a steel-toed work boot, but this is still a bit of a disheartening morning for me.
After a lovely afternoon visit yesterday from Grandma and Grandpa Dittrich, Aurelia endured a difficult evening. Her belly swelled substantially, she had trouble peeing, pooping, and she became magnificently gassy. Her pain medications failed to alleviate much discomfort and sleep eluded her for much of the night. With two fever spikes up to 101.8 we guaranteed our stay here in the CICU for at least another day.
The team took a urine analysis, blood analysis, and cultures, looking for infections that might be lurking somewhere unseen. This morning the urine analysis came back clean and Aurelia's white blood cell count is reasonable. Thankfully her fever is down after some ibuprofen and she moved her bowels and peed substantially a little while ago.
Currently, our best guess is that her intestinal track failed to start up to full speed after her surgery yesterday (remember that comment I made about her kidney seeming to have started up?), which meant that she had limited function, but not enough to tolerate full feeds. So all day yesterday, when we ran full feeds, Aurelia's body failed to fully process her food. This resulted in the gas, constipation, lack of urine, and painful belly swelling. To help her the team stopped last night's overnight feed and we will start a Pedialite feed later today to see if things are back up and running. We will keep you all posted.
Oh good news! I forgot to mention that pulmonary no longer believes Aurelia needs her inhalers. Yay!!!!
Showing posts with label feeding. Show all posts
Showing posts with label feeding. Show all posts
Friday, July 15, 2011
Friday, December 3, 2010
Will these scares always be with us?
Yesterday was very long for Jillian and I, but even longer for Aurelia. We're stressed about so many things. Jillian is simply done with being away. I don't blame her. She hasn't said much at all on the blog about her ordeal, but this has been one of the hardest paths she's ever walked, if not the hardest. She's finished with being at the hospital, being away from home, living out of a suitcase, keeping Madison away from home, trying to balance her needs, Aurelia's needs, and the feelings and emotions of family and friends, and putting up with a sometimes petulant husband.
For my part, I've shared some posts laced with some of the emotional challenges I face and did so again yesterday as we moved throughout the day's surgery. The partial nissen went well, as did the hernia repair and her g-tube installation. She spent the evening in the CICU still intubated and under heavy sedation. One bonus of being with this team of amazing professionals for so long comes from working one on one with nearly every attending, fellow, and resident that cycles through the sixth floor heart units. For example, her surgeon yesterday was the same surgeon that did Aurelia's intestinal operation on day 1 of life; her anesthesiologist yesterday was also the one that repaired her first PICC line after it went bad a few weeks ago (a month ago already, maybe?), and the attending doctors last night and today/this evening, Drs. Naim and Kirnch, both cared for Aurelia for weeks at a time.
This mattered to us because the team knew to keep Aurelia sedated while still intubated or else risk her becoming fiercely worked up and potentially at greater risks for stress-generated troubles. It took longer than we hoped for her to be extubated today, but given her respiratory history their caution is understandable. As such she's still on high flow room air through a gargantuan nasal canula, but other than the discomfort that's causing her, her breathing has been good.
Her g-tube looks good and if she maintains positive numbers through night rounds they will start her up on feeds, probably at 1/4 her caloric needs. We're excited about this for obvious reasons, but also because Aurelia had been on fluids only so much this last week that her electrolytes have been all over the map. So much so that tonight, while Jillian and I were in a class on how to administer feeds and medication through a g-tube, her heart rate began to stutter with a few early beats before crashing to the 70s. Naturally this caused more than some panic. Thankfully our girl showed her grit and brought her rate back up on her own and showed no real issues on her EKG, meaning they didn't have to administer any real kind of resuscitation.
So, now with her hernia repaired, her nissen hopefully helping with her reflux, and barring any more cardiac scares this evening, we hope to be on the path to getting fed, stable, and out of here in a couple of weeks.
And yes, we're crossing our fingers. We're not really getting our hopes up because we've been there too many times before, but we are starting to finalize our action plan for all the things that have to be in place for departure so that whenever it happens we will be able to focus on our girls and not administrative poppycock.
Hope you're all doing well, and as always, thank you for your prayers and love, and support.
For my part, I've shared some posts laced with some of the emotional challenges I face and did so again yesterday as we moved throughout the day's surgery. The partial nissen went well, as did the hernia repair and her g-tube installation. She spent the evening in the CICU still intubated and under heavy sedation. One bonus of being with this team of amazing professionals for so long comes from working one on one with nearly every attending, fellow, and resident that cycles through the sixth floor heart units. For example, her surgeon yesterday was the same surgeon that did Aurelia's intestinal operation on day 1 of life; her anesthesiologist yesterday was also the one that repaired her first PICC line after it went bad a few weeks ago (a month ago already, maybe?), and the attending doctors last night and today/this evening, Drs. Naim and Kirnch, both cared for Aurelia for weeks at a time.
This mattered to us because the team knew to keep Aurelia sedated while still intubated or else risk her becoming fiercely worked up and potentially at greater risks for stress-generated troubles. It took longer than we hoped for her to be extubated today, but given her respiratory history their caution is understandable. As such she's still on high flow room air through a gargantuan nasal canula, but other than the discomfort that's causing her, her breathing has been good.
Her g-tube looks good and if she maintains positive numbers through night rounds they will start her up on feeds, probably at 1/4 her caloric needs. We're excited about this for obvious reasons, but also because Aurelia had been on fluids only so much this last week that her electrolytes have been all over the map. So much so that tonight, while Jillian and I were in a class on how to administer feeds and medication through a g-tube, her heart rate began to stutter with a few early beats before crashing to the 70s. Naturally this caused more than some panic. Thankfully our girl showed her grit and brought her rate back up on her own and showed no real issues on her EKG, meaning they didn't have to administer any real kind of resuscitation.
So, now with her hernia repaired, her nissen hopefully helping with her reflux, and barring any more cardiac scares this evening, we hope to be on the path to getting fed, stable, and out of here in a couple of weeks.
And yes, we're crossing our fingers. We're not really getting our hopes up because we've been there too many times before, but we are starting to finalize our action plan for all the things that have to be in place for departure so that whenever it happens we will be able to focus on our girls and not administrative poppycock.
Hope you're all doing well, and as always, thank you for your prayers and love, and support.
Monday, November 1, 2010
Simmer down now!
It's been an interesting weekend. After Jillian's father arrived in the wee hours of Saturday morning, unexpectedly, Jillian and I hoped for a nice quiet weekend. For the most part we got what we wanted, but there are a number of unanswered questions as our sixth week begins.
Aurelia's heart continues to do well. We smile some at the irony of our stay here as her heart is doing so wonderfully that our discharge could have been weeks ago! To date there are no problems with her urinary tract and the VCUG she underwent showed no back-flush into her dead kidney at all. We are still too far out to do anything about her cleft palette and the latest brain ultrasound showed that her clot is still resolving itself and shrinking every day. These are very good things!
Her genetic evaluations have come back with nothing significant that requires any immediate therapy (if any at all) and Occupational Therapy liked her status as of last Thursday (we won't see them for some time). The Peanut's weight continues to increase and even though feeding has been a disaster she's still holding her own with only a potassium supplement to her daily nutritional fluids.
The PICC line is stable and uninfected, her peripheral line is still functioning and not painful, and the latest cardiac data on the pressures in each ventricle is good, as is the ability of her mitral valve to hold its own. The pulmonary band continues to be effective and the aortic arch reconstruction has not been rejected in any way. In fact, all of that surgery has been a success.
The treatment for her NEC has been bumped to ten days from seven, but that isn't necessarily a bad thing; her daily films show no advance of the infection, but they also do not show it lessening. Even if we *do* get the OK to start feeds again in ten days we probably won't until this airway business is completely sorted out.
The current issue on the table is Aurelia's upper and lower airway. She has had three airway collapses since she's made the move back to the CICU last Friday. She generally has one every twelve hours and only when she becomes particularly worked up. This usually follows a diaper change or a bout of hunger pain. Only one of these episodes, other than the very first which got us back into the CICU, required any kind of sedative to calm her and restore breathing function. The typical pattern for these collapses is a progressive desaturation of oxygen in her blood when she's having a fit. Then we'll see a sudden drop in her saturation levels as her airway (described as 'floppy') is unable to remain open. At this point they will slap the oxygen mask on her and pump her with anywhere between 2 to 4 liters of room air to push the airway open. They will then slowly ween her from the room air over the next few hours and she will be fine.
In the intervening time the staff suctions her nose and mouth for secretions every one to two hours. Because of her severe acid reflux (which is still being medically treated) and because they have a sump running into her stomach to keep everything out of her intestines, and because of her cleft palette, our daughter produces far more secretions in her mouth and esophagus than normal. This goop is usually withdrawn via a tube inserted through the nose into the back of the throat, or directly into the mouth and down the throat into the upper airway.
Dr. Naim is our attending again (yay!) and she'll be setting up a time for Ear/Nose/Throat to examine Aurelia's airway sometime this week. They will (or maybe not) intubate her - something that is not good for her vocal cord paresis or future eating ability - depending on how far down they have to examine her airway. Treatment can be anything from C-Pap, respirators, to temporary or lifetime tracheotomy. If we do have to go with either of the last two issues we will be here for another two months or so, give or take. Feeding at that point will be done via g-tube. This test coming up is a bit more invasive so it counts as yet another surgical procedure down in the operating room.
So that's where we are. My superintendent let me be absent from a professional development day today so that I could be here for rounds and the E/N/T consult/evaluation. We'll do our best to keep people updated.
Aurelia's heart continues to do well. We smile some at the irony of our stay here as her heart is doing so wonderfully that our discharge could have been weeks ago! To date there are no problems with her urinary tract and the VCUG she underwent showed no back-flush into her dead kidney at all. We are still too far out to do anything about her cleft palette and the latest brain ultrasound showed that her clot is still resolving itself and shrinking every day. These are very good things!
Her genetic evaluations have come back with nothing significant that requires any immediate therapy (if any at all) and Occupational Therapy liked her status as of last Thursday (we won't see them for some time). The Peanut's weight continues to increase and even though feeding has been a disaster she's still holding her own with only a potassium supplement to her daily nutritional fluids.
The PICC line is stable and uninfected, her peripheral line is still functioning and not painful, and the latest cardiac data on the pressures in each ventricle is good, as is the ability of her mitral valve to hold its own. The pulmonary band continues to be effective and the aortic arch reconstruction has not been rejected in any way. In fact, all of that surgery has been a success.
The treatment for her NEC has been bumped to ten days from seven, but that isn't necessarily a bad thing; her daily films show no advance of the infection, but they also do not show it lessening. Even if we *do* get the OK to start feeds again in ten days we probably won't until this airway business is completely sorted out.
The current issue on the table is Aurelia's upper and lower airway. She has had three airway collapses since she's made the move back to the CICU last Friday. She generally has one every twelve hours and only when she becomes particularly worked up. This usually follows a diaper change or a bout of hunger pain. Only one of these episodes, other than the very first which got us back into the CICU, required any kind of sedative to calm her and restore breathing function. The typical pattern for these collapses is a progressive desaturation of oxygen in her blood when she's having a fit. Then we'll see a sudden drop in her saturation levels as her airway (described as 'floppy') is unable to remain open. At this point they will slap the oxygen mask on her and pump her with anywhere between 2 to 4 liters of room air to push the airway open. They will then slowly ween her from the room air over the next few hours and she will be fine.
In the intervening time the staff suctions her nose and mouth for secretions every one to two hours. Because of her severe acid reflux (which is still being medically treated) and because they have a sump running into her stomach to keep everything out of her intestines, and because of her cleft palette, our daughter produces far more secretions in her mouth and esophagus than normal. This goop is usually withdrawn via a tube inserted through the nose into the back of the throat, or directly into the mouth and down the throat into the upper airway.
Dr. Naim is our attending again (yay!) and she'll be setting up a time for Ear/Nose/Throat to examine Aurelia's airway sometime this week. They will (or maybe not) intubate her - something that is not good for her vocal cord paresis or future eating ability - depending on how far down they have to examine her airway. Treatment can be anything from C-Pap, respirators, to temporary or lifetime tracheotomy. If we do have to go with either of the last two issues we will be here for another two months or so, give or take. Feeding at that point will be done via g-tube. This test coming up is a bit more invasive so it counts as yet another surgical procedure down in the operating room.
So that's where we are. My superintendent let me be absent from a professional development day today so that I could be here for rounds and the E/N/T consult/evaluation. We'll do our best to keep people updated.
Wednesday, October 20, 2010
Twenty-Seven Days Old
Today was a great day for little Aurelia. Her procedure yesterday, while exhausting for her, went well. They had a bit of trouble getting the NJ tube in, which wasn't much of a surprise considering the repairs that she had already had done in her intestines. The part that was difficult was the timing of the surgery. It was scheduled for 2:30, so she had to be taken off of food at noon. She had her last feed from 11-12 and then we waited until the IR folks were ready for her. 2:30 came and went. Our nurse, Jackie (who was so fantastic all day long - a real champ and fighter for her tiny charges and their parents) reported to me around 3:15 that IR had called and that Aurelia was next in line, after they completed the procedure that they were currently doing. It should be another half an hour or so. Aurelia was pretty content and didn't seem to be getting hungry, which was a surprise since her next feed should have been around 2 pm. At 4 pm, IR called again and said that it would be another 1/2 hour and that Jackie could go ahead and feed Aurelia. They didn't want her to have food in her belly because it would make the procedure "less messy," but since so much time had passed they didn't want to have a hungry/grouchy baby on their hands and thought that they could chance the mess. Jackie got Aurelia's milk warmed up and started the feed. She only had about 10 ml when IR called again and said that they were ready for her! Finally!
I had been told that I would be allowed to accompany her down to IR for the procedure, so we got Aurelia into a little baby cart and brought along her monitor, oxygen tank (they had to put her on oxygen for the transport to the IR lab), 2 nurses, a fellow, and me ~ and we all headed down to the lab. The trip wasn't long, just down a few halls, an elevator ride from Floor 6 to Floor 3 and a few more halls. When we got to IR, I was told that I couldn't stay. I kind of figured that would happen, but it was really tough to be sent away. The fellow, Dr. Janson told me that they'd take good care of her and that she'd be back in her room soon enough. I felt sad to leave her, but comforted that Dr. Janson and Jackie would be with her the whole time.
The wait was pretty torturous, but she came back sound asleep with her new NJ tube. Jackie said that it was tough and that they had a bit of trouble getting it in, but that our girl was a real trooper. She got a bit of a bloody nose (which sort of made me feel better, since I had given her one the day before when I placed the NG tube!), but that they got the tube in and that it was secured in place. Aurelia's heart rate (normally in the 120's to 140's) was extremely high (over 200) and they just wanted her to rest and calm down for a while, which she did after a half hour or so. By the time I left, she was down to the 150's and sleeping peacefully.
Today was a really nice day. I brought Madison and my mom to the hospital this morning and visited with Aurelia for a good long time. I got to be there for Rounds, which hasn't happened in several days. They were pleased with how she's doing, but they still plan on sending her for a cardiac catheter later on this week (Friday). It seems to me that Aurelia's breathing is much less labored and she didn't seem to be experiencing any reflux at all, which was great!
When I went back to the hospital this afternoon, she was wide awake for quite a while, so we spent a good long time just looking at each other and snuggling. I know that Charley has mentioned how much Aurelia hates having a wet or dirty diaper, so I was pleasantly surprised when I changed her this afternoon and she didn't get the least bit upset. She has been propped up/elevated in her bed for the last week or so to help with her reflux, but today she wasn't as propped ~ and she didn't seem to mind! I feel really good about the NJ tube helping both her breathing and her reflux and I pray that the pattern continues!
As good of a day as it was for me, I am constantly reminded about the fragility of our situation. I spoke with another couple tonight at dinner who are the parents to a 2-week old heart baby who had surgery yesterday. They said that it was a rough morning. They got a phone call around 5 am and they had to rush to the hospital because the baby was likely being sent back into the OR to have her chest re-opened. Luckily, that didn't happen and they were having a much better night. It is good to share in the experiences of others in this house. We were in a Family Meeting (once a month, mandatory meetings at the Ronald McDonald House, just to reiterate house rules and that sort of thing) tonight when their phone rang and the couple sprinted out of the meeting. I'm sure that it was the hospital calling and I really hope that their little girl is okay.
For now, our little girl is doing really well. As I said before, I hope that she continues getting better. This is a marathon, not a sprint. Some days it feels like we are hurdling toward the finish line and our good friends helen & Jason remind us that this is a marathon and not a sprint. It is a good mantra to keep in mind as we go through each day of this journey!
I had been told that I would be allowed to accompany her down to IR for the procedure, so we got Aurelia into a little baby cart and brought along her monitor, oxygen tank (they had to put her on oxygen for the transport to the IR lab), 2 nurses, a fellow, and me ~ and we all headed down to the lab. The trip wasn't long, just down a few halls, an elevator ride from Floor 6 to Floor 3 and a few more halls. When we got to IR, I was told that I couldn't stay. I kind of figured that would happen, but it was really tough to be sent away. The fellow, Dr. Janson told me that they'd take good care of her and that she'd be back in her room soon enough. I felt sad to leave her, but comforted that Dr. Janson and Jackie would be with her the whole time.
The wait was pretty torturous, but she came back sound asleep with her new NJ tube. Jackie said that it was tough and that they had a bit of trouble getting it in, but that our girl was a real trooper. She got a bit of a bloody nose (which sort of made me feel better, since I had given her one the day before when I placed the NG tube!), but that they got the tube in and that it was secured in place. Aurelia's heart rate (normally in the 120's to 140's) was extremely high (over 200) and they just wanted her to rest and calm down for a while, which she did after a half hour or so. By the time I left, she was down to the 150's and sleeping peacefully.
Today was a really nice day. I brought Madison and my mom to the hospital this morning and visited with Aurelia for a good long time. I got to be there for Rounds, which hasn't happened in several days. They were pleased with how she's doing, but they still plan on sending her for a cardiac catheter later on this week (Friday). It seems to me that Aurelia's breathing is much less labored and she didn't seem to be experiencing any reflux at all, which was great!
When I went back to the hospital this afternoon, she was wide awake for quite a while, so we spent a good long time just looking at each other and snuggling. I know that Charley has mentioned how much Aurelia hates having a wet or dirty diaper, so I was pleasantly surprised when I changed her this afternoon and she didn't get the least bit upset. She has been propped up/elevated in her bed for the last week or so to help with her reflux, but today she wasn't as propped ~ and she didn't seem to mind! I feel really good about the NJ tube helping both her breathing and her reflux and I pray that the pattern continues!
As good of a day as it was for me, I am constantly reminded about the fragility of our situation. I spoke with another couple tonight at dinner who are the parents to a 2-week old heart baby who had surgery yesterday. They said that it was a rough morning. They got a phone call around 5 am and they had to rush to the hospital because the baby was likely being sent back into the OR to have her chest re-opened. Luckily, that didn't happen and they were having a much better night. It is good to share in the experiences of others in this house. We were in a Family Meeting (once a month, mandatory meetings at the Ronald McDonald House, just to reiterate house rules and that sort of thing) tonight when their phone rang and the couple sprinted out of the meeting. I'm sure that it was the hospital calling and I really hope that their little girl is okay.
For now, our little girl is doing really well. As I said before, I hope that she continues getting better. This is a marathon, not a sprint. Some days it feels like we are hurdling toward the finish line and our good friends helen & Jason remind us that this is a marathon and not a sprint. It is a good mantra to keep in mind as we go through each day of this journey!
Tuesday, October 19, 2010
An NG or a NJ or an ABC to your XYZ
Aurelia goes in for a procedure in just a little bit. the folks down in IR (Interventionary Radiology) will be putting a feeding tube into Aurelia that runs not just into her stomach but beyond it and her duodenum and leaving it smack dab in her intestines.
Currently, Aurelia's tube ends in her stomach and she receives bolus feeds, or feeds every three hours. With this new NJ tube she will be fed 24 hours a day at a very small rate. The hope is that the NJ will lessen her acid reflux and thereby improve her ability to breathe.
It sounds silly, but I worry more about this than I do for her potentially coming heart catheter (done at the end of the week most likely. Maybe it is the immediacy of the procedure or maybe it's my own paranoia that something so small and 'routine' could end up disastrous. Either way your thoughts, prayers, and well wishes are welcome!
Currently, Aurelia's tube ends in her stomach and she receives bolus feeds, or feeds every three hours. With this new NJ tube she will be fed 24 hours a day at a very small rate. The hope is that the NJ will lessen her acid reflux and thereby improve her ability to breathe.
It sounds silly, but I worry more about this than I do for her potentially coming heart catheter (done at the end of the week most likely. Maybe it is the immediacy of the procedure or maybe it's my own paranoia that something so small and 'routine' could end up disastrous. Either way your thoughts, prayers, and well wishes are welcome!
Subscribe to:
Posts (Atom)