That was the underlying message from morning rounds. Alli had a relatively good night, which we were hoping would translate to a good day. There was some discussion about transitioning her off of the current ventilator to an oscillating ventilator, but only if necessary. We got the call late morning that they did make this transition. The oscillating ventilator is gentler on the lungs, but requires her to be continuously paralyzed. It is also not great for improving overall oxygen saturation in the blood, which is what we are starting to see now. Her heart rate and blood pressure are good, but her oxygen saturation levels are low. So, now they are debating putting her back on the original ventilator. To be perfectly honest, the details behind how the ventilators work and the oxygenation process are somewhat confusing and hard to explain. The moral of the story is that both methods can be effective in some ways and ineffective in others, which makes this a frustrating process when trying to achieve stability. It appears as though her UTI is clearing up. Given that, they now feel comfortable giving her IV steroids to help reduce inflammation in her lungs, which may also be contributing to her low oxygen levels.
I have my last OB appointment tomorrow. Hopefully it is as uneventful as our previous appointments. I asked Jason today if he thought we should try to move the delivery date. As you might imagine, it is unnerving to think about leaving Alli in this condition, not knowing when I will be able to get back in to see her.
We also have Samantha's parent teacher conference tomorrow. It is our first opportunity to meet with Miss Chandra and we are looking forward to hearing her back fill some of the details of Samantha's time at school. We hear a lot from Samantha about cylinder blocks, the pink tower, and the brown stair, but I suspect she is up to other things and I can't wait to hear all about it.
We will update more tomorrow.
Sisters
Thursday, February 28, 2013
Wednesday, February 27, 2013
The Plot Thickens...
I apologize for being late with the update. I wasn't able to get online from the hospital yesterday afternoon or evening. I'm not sure what the problem was.
Anyway...
Alli's cultures finally came back from the lab. They show that she has both a bacterial infection in her lungs, as well as a urinary tract infection. She was already being treated with antibiotics, so they are monitoring her cultures to ensure they are responding adequately. They determined yesterday that the leg with her central line was not getting enough blood flow due to clotting, therefore they removed the central line and placed a picc line. A picc line can be used for longer periods of time, so they may have needed to go that route anyway. The picc line goes through her arm so it should give the leg a chance to recover. They have started her on a 2 week course of treatment with blood thinners (heparin - for my pharmacy family and friends :) ). They did an x-ray when they placed the picc line yesterday to ensure they had appropriate placement. As they were confirming placement on the x-ray they had a view of her left lung and managed to catch it as a pneumothorax (air pocket in the lining of the lung) developed causing the lung to collapse. So, they were able to treat her immediately and replaced the lung catheter with a chest tube. Busy day for her. She is heavily medicated at this point on fentanyl, dopamine, epinephrine, xosin (sp?), occasional ketamine and versed when they do minor procedures, and of course, her normal course of seizure medication and a course of respiratory therapy.
As of this morning, her chest x ray still looks hazy on the left side. They are going to try two less invasive treatments to see if that helps to clean up the lung. If that does not work, then they will call pulmonology to endoscopically clean the lung from the inside. They do this by placing a scope down her breathing tube and then applying suction to specific areas within the lung. They are also planning to reassess her tolerance for feeds in the hopes of getting them started this evening. They will reconfirm placement of her nj tube and make the decision from there.
We appreciate the many offers you have made to help us. Jason and I are taking things week by week to determine what our needs are from an extra hands perspective. My mom arrived yesterday and is holding down the fort at home, with the assistance of Megan, our nanny. Alli will likely be in the hospital for quite a while, so once the baby comes we will need to determine who will be with Alli, who will be at home, etc. Up until this point we haven't needed to leave Alli for long periods of time without one of us being with her and we're hoping to be able to keep someone with her through the duration, even if on a rotating schedule.
Hopefully my internet problems at the hospital will be cleared up today and I will be able to write another update tonight.
Until then, have a great day! Thanks for hanging in there with us! We appreciate the prayers and expressions of support from everyone.
Anyway...
Alli's cultures finally came back from the lab. They show that she has both a bacterial infection in her lungs, as well as a urinary tract infection. She was already being treated with antibiotics, so they are monitoring her cultures to ensure they are responding adequately. They determined yesterday that the leg with her central line was not getting enough blood flow due to clotting, therefore they removed the central line and placed a picc line. A picc line can be used for longer periods of time, so they may have needed to go that route anyway. The picc line goes through her arm so it should give the leg a chance to recover. They have started her on a 2 week course of treatment with blood thinners (heparin - for my pharmacy family and friends :) ). They did an x-ray when they placed the picc line yesterday to ensure they had appropriate placement. As they were confirming placement on the x-ray they had a view of her left lung and managed to catch it as a pneumothorax (air pocket in the lining of the lung) developed causing the lung to collapse. So, they were able to treat her immediately and replaced the lung catheter with a chest tube. Busy day for her. She is heavily medicated at this point on fentanyl, dopamine, epinephrine, xosin (sp?), occasional ketamine and versed when they do minor procedures, and of course, her normal course of seizure medication and a course of respiratory therapy.
As of this morning, her chest x ray still looks hazy on the left side. They are going to try two less invasive treatments to see if that helps to clean up the lung. If that does not work, then they will call pulmonology to endoscopically clean the lung from the inside. They do this by placing a scope down her breathing tube and then applying suction to specific areas within the lung. They are also planning to reassess her tolerance for feeds in the hopes of getting them started this evening. They will reconfirm placement of her nj tube and make the decision from there.
We appreciate the many offers you have made to help us. Jason and I are taking things week by week to determine what our needs are from an extra hands perspective. My mom arrived yesterday and is holding down the fort at home, with the assistance of Megan, our nanny. Alli will likely be in the hospital for quite a while, so once the baby comes we will need to determine who will be with Alli, who will be at home, etc. Up until this point we haven't needed to leave Alli for long periods of time without one of us being with her and we're hoping to be able to keep someone with her through the duration, even if on a rotating schedule.
Hopefully my internet problems at the hospital will be cleared up today and I will be able to write another update tonight.
Until then, have a great day! Thanks for hanging in there with us! We appreciate the prayers and expressions of support from everyone.
Monday, February 25, 2013
February 25
It is 11:00 and I am sitting with Alli in her hospital room. In all fairness to Jason, he offered to switch places and let me sleep at home. But, being here has been my routine and I want to carry it out as long as I can with her. Just her presence brings peace and soothes the many worries that float through my thoughts. It takes me back to the day she was born. Post birth there was so much emotion and many many tears, but once I was with her in the NICU those tears subsided. She brings great peace. Today started somewhat the same way. Last nights events were unsettling. We have progressed to the point that Alli has to be intubated to fight a cold. It isn't as if she has RSV or the flu - something that we have been warned would be truly catastrophic for her - she has a cold. So, I was emotionally a little all over the place this morning, but that subsided once I was able to just sit with her in her room. I would love to hold her and snuggle her. She is a great snuggler.
We had hoped for a drama free day and for the most part succeeded. She had one episode of dropping sats and blood pressure that involved a shot of epinephrine to reverse. It was unnerving to hear them call for the crash cart. I don't think anyone wants to hear that phrase used in reference to their child, spouse, or any other loved one. Luckily, the epinephrine did its job and they didn't need to resort to those measures. Later this afternoon, they put a catheter in to her lung to drain some residual fluid. Since then, her sats have steadily improved and they have been able to come down slowly on the dopamine and epinephrine. Her sats right now are 94 - the highest they have been all day. I am hopeful that this will continue throughout the night.
They have sent numerous cultures off to the lab to check her infection levels. They sent urine, lung fluid, and one other sample that I can't remember. That should give us an idea of how things are progressing. Depending on where she is in relation to the respiratory virus, it is possible that we have gotten over a hurdle, but there is no telling that for sure. We just have to watch and wait.
Since I have been here tonight I have started to see her move her arms and legs from time to time. Of course, given her oxygen situation, I am a little paranoid about whether we're seeing normal movements or movements reminiscent of spasms. Once you've gone through infantile spasms, that just sort of goes with the territory. Those little random jerks that children often make are no longer taken for granted with Alli. Everything is analyzed as possible seizure activity.
Thankfully, our little guy is staying put right where he is. I hope he is always this compliant.
Samantha is doing well. She has been asking more questions about Alli being sick. Yesterday she asked Jason and me if Alli was sick because of her (Samantha's) sick hands. We both immediately assured her that she had nothing to do with Alli being this sick.
I will update more tomorrow. Have a good night!
We had hoped for a drama free day and for the most part succeeded. She had one episode of dropping sats and blood pressure that involved a shot of epinephrine to reverse. It was unnerving to hear them call for the crash cart. I don't think anyone wants to hear that phrase used in reference to their child, spouse, or any other loved one. Luckily, the epinephrine did its job and they didn't need to resort to those measures. Later this afternoon, they put a catheter in to her lung to drain some residual fluid. Since then, her sats have steadily improved and they have been able to come down slowly on the dopamine and epinephrine. Her sats right now are 94 - the highest they have been all day. I am hopeful that this will continue throughout the night.
They have sent numerous cultures off to the lab to check her infection levels. They sent urine, lung fluid, and one other sample that I can't remember. That should give us an idea of how things are progressing. Depending on where she is in relation to the respiratory virus, it is possible that we have gotten over a hurdle, but there is no telling that for sure. We just have to watch and wait.
Since I have been here tonight I have started to see her move her arms and legs from time to time. Of course, given her oxygen situation, I am a little paranoid about whether we're seeing normal movements or movements reminiscent of spasms. Once you've gone through infantile spasms, that just sort of goes with the territory. Those little random jerks that children often make are no longer taken for granted with Alli. Everything is analyzed as possible seizure activity.
Thankfully, our little guy is staying put right where he is. I hope he is always this compliant.
Samantha is doing well. She has been asking more questions about Alli being sick. Yesterday she asked Jason and me if Alli was sick because of her (Samantha's) sick hands. We both immediately assured her that she had nothing to do with Alli being this sick.
I will update more tomorrow. Have a good night!
Rough Day and Night
Just a quick status update to let you know where things stand. Alli had a rough day and night. She has been intubated and is receiving nitric oxide to help open up her lungs. They are keeping her asleep in order for her body to rest. She is currently fighting both rhinovirus and enterovirus. Her hematocrit level is low, so they are giving her blood. Her sats have fluctuated wildly throughout the day. When Jason and I last saw her, they were in the high 80s, which was good for today. Her blood pressure is high and they are trying to bring that down with both sedation and the blood transfusion. She has an arterial line and a venous line in her groin. They have her hands restrained so she doesn't pull anything out, as she is starting to wake up a little. As of right now, their primary concern is getting her over both viruses and then they can proceed with further testing. We don't know anything in terms of longer term prognosis - how long she will be here, the extent of any damage that has been done to her lungs, etc. So, we'll take it one day at a time. Right now we need her to get over these viruses and then we can move forward from there. Thanks for hanging in there with us and especially Alli. We'll keep you posted...
Sunday, February 24, 2013
Overnight Update
Alli went to cardiac intensive care about about 2:00 am. They had to put her on bi-pap to help get her sats up and she will require more attention than they can give on "the floor." She is in a private room, as they are concerned that she may have a respiratory infection. They were swabbing her to test for viruses this morning. That is all I know, as of right now. I will post another update when I have more information.
Saturday, February 23, 2013
The Countdown Begins!
March 8th is the big day! We have a noon c-section scheduled for the arrival of baby boy Hakerem. We finally agreed on a name and can't wait to share it with the world...after he's born :) There are some finishing touches to be placed on the nursery, but we have diapers, wipes, clothes, and a crib. We're good to go and very excited for his arrival!
As many of you already know, Alli was admitted to the hospital (yes, again) yesterday afternoon. We have struggled during this cold/flu season to keep her healthy and breathing clearly. She has had repeated instances of pneumonia and she now also has evidence of pleural effusion, in addition to pneumonia in her right lung.
The doctors' current operating theory, since she is virus free, is that she is aspirating in to the right lung. The trachea is positioned closer to the right lung, therefore, when aspiration occurs, it goes to the right lung. What could she be aspirating? At this point, they think she is refluxing and then aspirating her own secretions (including what is refluxed from the stomach). The solution for this right now is to switch out her g-tube button with a gj button. The g-tube button currently deposits her feedings directly in to her stomach. A gj tube bypasses the stomach and deposits food directly in to the small intestine. It is still possible for there to be some degree of reflux from the small intestine in to the stomach, however, it is more difficult for those contents to reflux beyond the stomach in to the esophagus. Her button will be switched out on Monday (hopefully). In the meantime, she has an nj tube. The nj tube goes through her nose (similar to her ng tube) and passes through the stomach in to the intestine. We will have to put her blended food diet on hold until we get this under control, but have found a food based formula equivalent to hold us over until we can get back to the blended food diet. I have also considered juicing for her, since that would be 100% fluid with no particles to clog the j tube. We can not be as independent with the j-tube as we were with the g-tube. If it comes out, she needs to have it replaced in the GI office or at the hospital.
With regard to the pleural effusion, they think this is being caused by the residual defects from her original cardiac defects. She has a good degree of stenosis in her branch pulmonary arteries, which causes some regurgitation of blood out of her mitral and pulmonary valves. Once her pneumonia has cleared, they are planning to perform a heart cathaterization to more closely examine that regurgitation, as well as to open up what they can in the branch pulmonary arteries. They have been able to approximate the impact of both of these through a cardiac MRI and a lung perfusion exam, however, the catheterization will give them the full picture of her anatomy and the ability to implement some changes while they are in there.
All of this is supposed to happen over the course of the next two weeks. So, let's hope baby boy cooperates.
When we were last discharged from the hospital, in January, we underwent a number of changes at home. We started in-home nursing 8 hours per day with Alli and we beefed up our home medical equipment. We now are the proud renters of a suction machine and the vest airway clearance system. Alli's bedroom is starting to look more like a hospital system, but with the assistance of the nurses we are better equipped to manage more of her care at home.
As you can imagine, being full term with all of this going on, my usual 'tough as nails' (ha!) exterior has started to crack. I'm eager for the hormones to take a rest so I can go back to some semblence of a composed and capable human being. I cry on a dime. It is ridiculous. Then, of course, there are the helpful people, who I'm not even sure are well intentioned, who verbalize to me, "so, how exactly are you going to handle this when the new baby arrives?" I'm not a huge fan of this question. It is a fair one, but I'm not a planner. Our plan with Alli since the day she was born was to take things one day at a time. I think we'll stick with that plan and be thankful for the many extra hands we have to help us - family, friends, Alli's nurses, and Samantha's nanny, Megan. We've had to overcome our reluctance to ask for help and acknowledge that between the 2 of us, there are times when there are more things than Jason and I can handle and mostly for the sake of Samantha, we take people up on offers to help, especially where she is concerned.
Samantha continues to do well, thankfully. I feel like sometimes we are parenting her on auto-pilot. I can only hope that we have enough stability and consistency in place that she doesn't go broke on a psychiatrist when she hits her mid-quarter life crisis some day. I second guess all of our decisions with her, but just when I find myself wondering if I will look back and regret the decision to put her in school at such a young age, I find myself so thankful for the friends that she adores at school and the fact that she loves to be there. Every day she tells us she is excited to go back to school and carpool and the next day. It gets to the point that Jason and I feel bad for her when school is out. So, I'm happy that she has a happy place and somewhere to go that means she doesn't have to tag along to all of Alli's doctor and therapy appointments.
Thanks for your continued love, prayer, and support for our family. We keep all of you in our prayers, as well. More updates to come this week, as we find out more information.
As many of you already know, Alli was admitted to the hospital (yes, again) yesterday afternoon. We have struggled during this cold/flu season to keep her healthy and breathing clearly. She has had repeated instances of pneumonia and she now also has evidence of pleural effusion, in addition to pneumonia in her right lung.
The doctors' current operating theory, since she is virus free, is that she is aspirating in to the right lung. The trachea is positioned closer to the right lung, therefore, when aspiration occurs, it goes to the right lung. What could she be aspirating? At this point, they think she is refluxing and then aspirating her own secretions (including what is refluxed from the stomach). The solution for this right now is to switch out her g-tube button with a gj button. The g-tube button currently deposits her feedings directly in to her stomach. A gj tube bypasses the stomach and deposits food directly in to the small intestine. It is still possible for there to be some degree of reflux from the small intestine in to the stomach, however, it is more difficult for those contents to reflux beyond the stomach in to the esophagus. Her button will be switched out on Monday (hopefully). In the meantime, she has an nj tube. The nj tube goes through her nose (similar to her ng tube) and passes through the stomach in to the intestine. We will have to put her blended food diet on hold until we get this under control, but have found a food based formula equivalent to hold us over until we can get back to the blended food diet. I have also considered juicing for her, since that would be 100% fluid with no particles to clog the j tube. We can not be as independent with the j-tube as we were with the g-tube. If it comes out, she needs to have it replaced in the GI office or at the hospital.
With regard to the pleural effusion, they think this is being caused by the residual defects from her original cardiac defects. She has a good degree of stenosis in her branch pulmonary arteries, which causes some regurgitation of blood out of her mitral and pulmonary valves. Once her pneumonia has cleared, they are planning to perform a heart cathaterization to more closely examine that regurgitation, as well as to open up what they can in the branch pulmonary arteries. They have been able to approximate the impact of both of these through a cardiac MRI and a lung perfusion exam, however, the catheterization will give them the full picture of her anatomy and the ability to implement some changes while they are in there.
All of this is supposed to happen over the course of the next two weeks. So, let's hope baby boy cooperates.
When we were last discharged from the hospital, in January, we underwent a number of changes at home. We started in-home nursing 8 hours per day with Alli and we beefed up our home medical equipment. We now are the proud renters of a suction machine and the vest airway clearance system. Alli's bedroom is starting to look more like a hospital system, but with the assistance of the nurses we are better equipped to manage more of her care at home.
As you can imagine, being full term with all of this going on, my usual 'tough as nails' (ha!) exterior has started to crack. I'm eager for the hormones to take a rest so I can go back to some semblence of a composed and capable human being. I cry on a dime. It is ridiculous. Then, of course, there are the helpful people, who I'm not even sure are well intentioned, who verbalize to me, "so, how exactly are you going to handle this when the new baby arrives?" I'm not a huge fan of this question. It is a fair one, but I'm not a planner. Our plan with Alli since the day she was born was to take things one day at a time. I think we'll stick with that plan and be thankful for the many extra hands we have to help us - family, friends, Alli's nurses, and Samantha's nanny, Megan. We've had to overcome our reluctance to ask for help and acknowledge that between the 2 of us, there are times when there are more things than Jason and I can handle and mostly for the sake of Samantha, we take people up on offers to help, especially where she is concerned.
Samantha continues to do well, thankfully. I feel like sometimes we are parenting her on auto-pilot. I can only hope that we have enough stability and consistency in place that she doesn't go broke on a psychiatrist when she hits her mid-quarter life crisis some day. I second guess all of our decisions with her, but just when I find myself wondering if I will look back and regret the decision to put her in school at such a young age, I find myself so thankful for the friends that she adores at school and the fact that she loves to be there. Every day she tells us she is excited to go back to school and carpool and the next day. It gets to the point that Jason and I feel bad for her when school is out. So, I'm happy that she has a happy place and somewhere to go that means she doesn't have to tag along to all of Alli's doctor and therapy appointments.
Thanks for your continued love, prayer, and support for our family. We keep all of you in our prayers, as well. More updates to come this week, as we find out more information.
Subscribe to:
Posts (Atom)