Friday, June 18, 2010

Saturday Morning...a lot of catching up to do.

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.

1 comment:

  1. It is sooo hard to see the big picture and not focus on the day to day and even hour by hour. Is the hydronephrosis the reason why her abdomen looks a bit distended or is that just the fluids in general? I noticed it in the pics but figured it was something they were already addressing. We will conmtinue to pray for Natalie and if you have any kidney questions, you know where to ask! It does seem like the oscillator is making a difference slowly. I remember they told us peep by peep LOL I thought that was funny. Hang in there, we love you guys!