So Wednesday night we were at Natalie's bedside and noticed she was breathing more and more about the vent. She was having retractions which are so difficult to see. At first the nurse was not concerned and said it was just hard to get her sedated enough to stop her from breathing over the vent. As time passed it became worse and the nurse asked the doctor to come bedside and observe. When I say ask, really I mean she sent another nurse to deliver the message in a big hurry and people came running.
The CO2 monitor was reading up in the 90's, and while it is not considered to be accurate (used more for trending) it has been correlating well with her blood gases. I was beginning to feel more and more panic rise in my chest. They pulled the vent and bagged her so the doctor could hear her lung sounds. It appeared as though now the left side was starting to collapse (on Tuesday it was the right side that had collapsed). The blood gas CO2 was in fact 90 was accurate and I felt sick. She had been going along with CO2s in the 60's on the conventional vent and I was so scared to see her not able to eliminate CO2 on the oscillator.
The doctor tweaked the power setting (this adjusts the "shake" she gets and makes her visibly vibrate more. Part of assessing Natters now is checking to make sure she has good "shake."). No immediate response. We had to leave once again because Anneliese needed to get to bed. Dr. Dadiz promised to stay by Natalie until she was certain she was stable. Bless her heart, she was there until 9PM. After reminding us to not focus on the numbers, she later told me Wednesday night she had to force herself to walk away so she did not fixate on the numbers herself.
So that was Wednesday. We were sad and discouraged.
Thursday was a better day. She made it all the way into the high 50's for O2. It only lasted for a few hours but it proves her lungs are capable of getting that low. I saw her in the evening and she was very alert despite all the hard core sedatives she is on (morphine drip, versed and fentanyl). She is one tough little lady to fight through all that and be awake. Several nurses have said she is her own worst enemy-she fights so hard even at times when she would be better off letting go and relaxing.
Friday I was able to make it to the hospital while they were rounding thanks to Grandpa and Aunt Audi babysitting (Thank you!). I wish I could be at rounds every day. When I arrived I checked her O2 display and it was at 55%. I pointed and the nurse looked at me and grinned. That was the third time since being on the oscillator that she made it down that low and stayed for several hours.
The big news Friday is that the results from her kidney and liver ultrasound were back. It appears there are two areas in her right kidney that have fungal infections. Once again it is "well, it could be something else, but we really feel it is fungal balls." She had already been placed on anti-fungal meds in anticipation of them finding a fungal infection so now they will continue at the same dose. They discontinued her antibiotic because they feel confident the infection they suspected from last weekend is the fungal rather than bacterial.
The kidney u/s also revealed that her kidneys are slightly enlarged (hydronephrosis). This increases her risk of developing a urinary tract infection so from now on she will be on a low dose of prophylactic antibiotics. When she is stable enough and no longer requiring huge pieces of medical equipment to breathe she will undergo a dye test to diagnose the cause of the enlarged kidneys. In the meantime the antibiotics will hopefully prevent infection and the kidneys will be a nonissue. I have once again added a new item to my "worry about this later" file.
There is one other complication regarding the fungal infection in her kidneys. When a baby has a fungal kidney infection they are at an increased risk for having "fungal balls" in the eyes. Boy I hate the term fungal balls-it seems like they should be cute rather than something that makes your baby ill. It is not common, but happens enough that checking the eyes when there is a kidney fungal infection is standard of care. Natalie will have her eye exam early next week. There are implications for her eyesight if there is a fungal infection present, but I have decided not to worry about this unless it becomes an actual diagnosis. My heart is already overwhelmed with worries over blood gases and O2 levels to let much else in.
They have increased her feeds from 1cc an hour to 1.5cc an hour. It will be a very gradual increase in feeds to give her intestines a good chance at tolerating them well. Full feeds for Natalie are 15cc an hour with a lot of extra calories mixed in so we have a long way to go before she is at optimal nutrition. In the meantime she is back on the TPN.
She has had one weanable blood gas over the past few days-her CO2 was all the way down into the 40's. That was early Friday morning and she has tolerated the change well so far. Her blood gases since then have all been "decent."
Our Saturday morning update was not so great. She has been up at 100% again but the nurse was finally able to wean her to 90%. A chest X-ray did not reveal any obvious issues so we are waiting to see what happens. Dr. Dadiz was only on service for a week so there is a new doctor covering this weekend. Dr. Pryhuber returns Monday. I am less than thrilled that Natalie is starting the weekend having difficulties and the neonatologist is not familiar with her.
The NICU experience is often described as being a roller coaster. Right now it is more like the bumper cars. I am sitting still, trying to catch my breath and brace myself for the next hit that will come out of nowhere. Other times it feels like one of those rides that just spin you around until you wish you hadn't eaten lunch. Either way I am anxious for the day I can describe being Natalie's mother by using gleeful analogies.
Updates are a little hard for me right now as I never feel confident about where we stand. I am trying to look at her status of a period of days rather than a day to day report. Things change so much and usually without a reason anyone can identify.
My instincts tell me that if the oscillator is going to make a difference that we will not see big progress for several weeks. She needs the time to grow and heal....and I need to have the patience to allow it.
Showing posts with label oscillator. Show all posts
Showing posts with label oscillator. Show all posts
Friday, June 18, 2010
Sunday, June 13, 2010
a rough update
Friday Natters had a very difficult day. I had made plans to celebrate Steve's birthday but we were both so stressed it was impossible. At times like this birthdays are really a barely noticeable blip on the radar. He joked it was "easily the worst birthday ever" and I get it. Two years ago on my birthday I was recovering from our second miscarriage. This year on my birthday I was about to enter the hospital for bed rest and was out of my mind with fear for my unborn baby. The way I see it, next year our family is due to have some major celebrations. For now our priorities are elsewhere and that is just the way it is. For Mother's Day and our anniversary I told him not to spend one minute thinking about presents or romantic gestures. There is no energy left for such things and I did not want him to feel pressure. Right now the fact that he wakes up every day and stands next to me as we face our life is all I need. There are no greater displays of love than how a person responds when life gets this hard. I have always known that I found an incredible man and that marrying him was the smartest thing I ever did. This year has only made that crystal clear. I am grateful for the marriage we have. I imagine situations like this only worsen the cracks in a relationship and am relieved we have a strong foundation to see us through. Thank you God (and David and Karen) for Stephen.
Oh, can you tell that it is 2:30 in the morning and I am feeling emotional? I'll get on with what I intended and that is update on Natters current status. I do have more pictures, including wide awake ones from tonight that I will post tomorrow. Despite having challenging lungs she continues to be one of the cutest people on the planet and obviously the strongest person I know.
I wrote this to update some of my cyber friends and was going to try to edit it for the blog but frankly I am too tired. I trust you'll forgive me for typos and whatnot....
Last evening (Friday) Nat had her last dose of antibiotics. Hours later her temp spiked. She tends to run warm b/c she works so hard to breathe. I mean, she can not wear hats ever and she rarely wears clothes now b/c she overheats easily. Her temp has been up the last week or so but they said it was due to the breathing. Her temp was up enough last night though to raise eyebrows.
Anyhow, slightly elevated WBC, elevated CRP (a general indicator for inflammation) and the white cells show toxic granulation (which is an indicator of cells actively fighting infection). These days I am very glad for my lab training. It helps me feel at least more comfortable with the information we're given.
They ordered another sepsis work-up, this time with a lumbar puncture. The clinical side of my brain said "of course they need to look at her spinal fluid." The mother side of me screamed "Get your hands off my baby!!!!!" I am really repressing all my emotions from tonight. I saw her alert for the first time in a long time and I knew I was leaving her to have this painful procedure. It was such an awful feeling. They did sedate her for it but I HATE that she is going through this. As a mom I tear up when Annie gets vaccinations. There are no words for how I feel when Natalie needs a spinal tap or they spend hours trying to place another IV.
The two bacteria they cultured previously should have been treated by the antibiotic course she just finished. Basically they think it could be a few different scenarios... she may have a clot somewhere that is acting as a hiding spot for bacteria and making it harder for the antibiotics to treat, that she has endocarditis and that is making it harder to treat (bacteria hiding out on a heart valve), or she has an infection with a different bug and it was only partially suppressed by the antibiotics and she needs different meds. There is also a possibility that she developed a fungal infection so antibiotics are of no use. They called in the infectious disease doctors for another consult.
Sorry if this is loaded with typos. I am barely awake.
We talked about the possibility of putting her back on the oscillator to see if she would do better on it than the conventional vent but then there are major drawbacks to that as well. It can be hard to maintain blood pressure, she would need more sedation, she would be more immobile and suffer from being in only two different positions. It is also harder to manage the lungs for various reasons. On the upside it may be more gentle on her lungs and she may oxygenate better. She said she would put her on it now if we asked for it. I asked what she would do if Nattie was her baby and she said she would wait a week or two to see how things go. If, in the meantime, she reaches a point of being at 100% O2 for days at a time or she is not satting high enough on 100% O2 that she will try it out sooner.
She also explained the tracheostomy to us to prepare for that possibly happening in the next month. They feel if she is going to be on the vent a long time it will be better for her developmentally since she is full term now. It will allow Natalie to move her head freely and practice facial expressions. Clearly a tracheostomy is a major decision and we have not reached that point yet. It is mostly being discussed now to mentally prepare us in case it becomes a need.
I am hoping that they culture whatever it is that is making her sick and I am REALLY hoping that the infection is the cause of the recent problems, although the antibiotics really did not seem to improve things last time.
She did talk more about the ASD and that they have been talking to cardiology and they still do not think fixing it is worth the risk of surgery. They also say if the hypertension comes back the ASD can act as a "release valve" and take pressure off the heart. The BPD increases the risk of the PPH returning so keeping the release valve open is a significant concern.
I asked about checking her airway with a scope and she does not feel that she has seen anything that indicates an airway issue. I am not pushing for a scope because I do not want Natalie put through any more medical procedures than are clearly necessary.
I do want to add that last night when we were living life hour to hour I retreated to read a magazine and distract myself (as if turning off my brain is even possible). Anyhow, I saw a picture of a little girl playing dress up and dancing. Suddenly I felt in my heart that one day Natalie would do such things. Some day I do trust that she will be a happy little girl with few cares in the world. Some day everything that she is battling and enduring will be worth it to her. I do believe this. While it is hard to turn away from fear when your beloved child is so sick, I am trying to look ahead and see our lives put back together again.
You know I am going to ask for more prayers and good thoughts. Whatever love and positive energy you can send to our Natalie Evelyn is much appreciated. Friday night I told her about all the people who are loving her from afar and want the best for her. When I say "our" Natalie I mean all of us as I really feel she does not belong just to her parents but to everyone who has had a hand at bringing her into the world and supporting her along the way.
Now I am going to shush myself and go to sleep.
Oh, can you tell that it is 2:30 in the morning and I am feeling emotional? I'll get on with what I intended and that is update on Natters current status. I do have more pictures, including wide awake ones from tonight that I will post tomorrow. Despite having challenging lungs she continues to be one of the cutest people on the planet and obviously the strongest person I know.
I wrote this to update some of my cyber friends and was going to try to edit it for the blog but frankly I am too tired. I trust you'll forgive me for typos and whatnot....
Last evening (Friday) Nat had her last dose of antibiotics. Hours later her temp spiked. She tends to run warm b/c she works so hard to breathe. I mean, she can not wear hats ever and she rarely wears clothes now b/c she overheats easily. Her temp has been up the last week or so but they said it was due to the breathing. Her temp was up enough last night though to raise eyebrows.
Anyhow, slightly elevated WBC, elevated CRP (a general indicator for inflammation) and the white cells show toxic granulation (which is an indicator of cells actively fighting infection). These days I am very glad for my lab training. It helps me feel at least more comfortable with the information we're given.
They ordered another sepsis work-up, this time with a lumbar puncture. The clinical side of my brain said "of course they need to look at her spinal fluid." The mother side of me screamed "Get your hands off my baby!!!!!" I am really repressing all my emotions from tonight. I saw her alert for the first time in a long time and I knew I was leaving her to have this painful procedure. It was such an awful feeling. They did sedate her for it but I HATE that she is going through this. As a mom I tear up when Annie gets vaccinations. There are no words for how I feel when Natalie needs a spinal tap or they spend hours trying to place another IV.
The two bacteria they cultured previously should have been treated by the antibiotic course she just finished. Basically they think it could be a few different scenarios... she may have a clot somewhere that is acting as a hiding spot for bacteria and making it harder for the antibiotics to treat, that she has endocarditis and that is making it harder to treat (bacteria hiding out on a heart valve), or she has an infection with a different bug and it was only partially suppressed by the antibiotics and she needs different meds. There is also a possibility that she developed a fungal infection so antibiotics are of no use. They called in the infectious disease doctors for another consult.
Sorry if this is loaded with typos. I am barely awake.
We talked about the possibility of putting her back on the oscillator to see if she would do better on it than the conventional vent but then there are major drawbacks to that as well. It can be hard to maintain blood pressure, she would need more sedation, she would be more immobile and suffer from being in only two different positions. It is also harder to manage the lungs for various reasons. On the upside it may be more gentle on her lungs and she may oxygenate better. She said she would put her on it now if we asked for it. I asked what she would do if Nattie was her baby and she said she would wait a week or two to see how things go. If, in the meantime, she reaches a point of being at 100% O2 for days at a time or she is not satting high enough on 100% O2 that she will try it out sooner.
She also explained the tracheostomy to us to prepare for that possibly happening in the next month. They feel if she is going to be on the vent a long time it will be better for her developmentally since she is full term now. It will allow Natalie to move her head freely and practice facial expressions. Clearly a tracheostomy is a major decision and we have not reached that point yet. It is mostly being discussed now to mentally prepare us in case it becomes a need.
I am hoping that they culture whatever it is that is making her sick and I am REALLY hoping that the infection is the cause of the recent problems, although the antibiotics really did not seem to improve things last time.
She did talk more about the ASD and that they have been talking to cardiology and they still do not think fixing it is worth the risk of surgery. They also say if the hypertension comes back the ASD can act as a "release valve" and take pressure off the heart. The BPD increases the risk of the PPH returning so keeping the release valve open is a significant concern.
I asked about checking her airway with a scope and she does not feel that she has seen anything that indicates an airway issue. I am not pushing for a scope because I do not want Natalie put through any more medical procedures than are clearly necessary.
I do want to add that last night when we were living life hour to hour I retreated to read a magazine and distract myself (as if turning off my brain is even possible). Anyhow, I saw a picture of a little girl playing dress up and dancing. Suddenly I felt in my heart that one day Natalie would do such things. Some day I do trust that she will be a happy little girl with few cares in the world. Some day everything that she is battling and enduring will be worth it to her. I do believe this. While it is hard to turn away from fear when your beloved child is so sick, I am trying to look ahead and see our lives put back together again.
You know I am going to ask for more prayers and good thoughts. Whatever love and positive energy you can send to our Natalie Evelyn is much appreciated. Friday night I told her about all the people who are loving her from afar and want the best for her. When I say "our" Natalie I mean all of us as I really feel she does not belong just to her parents but to everyone who has had a hand at bringing her into the world and supporting her along the way.
Now I am going to shush myself and go to sleep.
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