Entry by Josh:
10:55am
Every morning the crew of Drs make their rounds in the NICU. This usually consists of a Neonatoligist, a Nurse practitioner, the nurse that is at Avelyn's bedside and potentially other specialists. Today all were present, and the specialist was a Dr from the cardiac team. Here are some of the highlights:
- Good Stuff: They have had Avelyn on Hydrocortizone every 12 hours. They are reducing that to every 24. Originally they believed it was helping her to pee, which is super important for her to keep moving fluids out of her body and eventually reduce the edema (swollen, fluid filled skin). Because she is peeing more regularly they are going to take her off of the hydrocortizone.
- Good stuff: Her "Blood gases" were better today. This is a measurement of the oxygen, carbon dioxide and ph levels in her blood. All three of those were better!
- Could be good stuff?? They are going to try her on Lasix - a drug that is a diarrhetic. They hope that this will help to continue removing some of the extra fluid by helping her pee, etc...the downside is that they also need to make sure there is enough fluid traveling through her heart, so along with the Lasix they are upping her fluid levels a little. There is also a risk with Lasix that the fluid that is removed is the good fluid that her body needs, not the fluid that is being retained in her skin. At some point, but not yet they may try to increase her albumin levels. Albumin helps move many small molecules through the blood, including bilirubin, calcium, progesterone, and medications. It plays an important role in keeping the fluid from the blood from leaking out into the tissues. They don't want to add the extra Albumin yet, but first see how she responds to the Lasix.
- Good stuff: Last night they thought they read a slight irregularity in her heartbeat...they called it a "flutter". However, this morning the cardiac Dr looked at the reading and determined that based on how random it was, and the fact that her numbers since then have been very stable it was an anomaly...nothing to worry about.
- Her skin color has changed significantly in the past 12 hours. She has some jaundice, and her bilirubin levels have gone up a bit since yesterday. These levels aren't overly alarming at this point, but the number did go up, so not great. They have a phototherapy lamp on her to counteract this and are monitoring it at this point.
We need prayers that she will lose the edema. The edema is being caused by whatever has made her sick, but causes challenges to her ability to breath on her own. They have consistently said that fluid levels and edema can decrease quickly (within a couple of days) or can take weeks to subside.
Thanks for all the encouragement and keep those prayers coming!!!
10:55am
Every morning the crew of Drs make their rounds in the NICU. This usually consists of a Neonatoligist, a Nurse practitioner, the nurse that is at Avelyn's bedside and potentially other specialists. Today all were present, and the specialist was a Dr from the cardiac team. Here are some of the highlights:
- Good Stuff: They have had Avelyn on Hydrocortizone every 12 hours. They are reducing that to every 24. Originally they believed it was helping her to pee, which is super important for her to keep moving fluids out of her body and eventually reduce the edema (swollen, fluid filled skin). Because she is peeing more regularly they are going to take her off of the hydrocortizone.
- Good stuff: Her "Blood gases" were better today. This is a measurement of the oxygen, carbon dioxide and ph levels in her blood. All three of those were better!
- Could be good stuff?? They are going to try her on Lasix - a drug that is a diarrhetic. They hope that this will help to continue removing some of the extra fluid by helping her pee, etc...the downside is that they also need to make sure there is enough fluid traveling through her heart, so along with the Lasix they are upping her fluid levels a little. There is also a risk with Lasix that the fluid that is removed is the good fluid that her body needs, not the fluid that is being retained in her skin. At some point, but not yet they may try to increase her albumin levels. Albumin helps move many small molecules through the blood, including bilirubin, calcium, progesterone, and medications. It plays an important role in keeping the fluid from the blood from leaking out into the tissues. They don't want to add the extra Albumin yet, but first see how she responds to the Lasix.
- Good stuff: Last night they thought they read a slight irregularity in her heartbeat...they called it a "flutter". However, this morning the cardiac Dr looked at the reading and determined that based on how random it was, and the fact that her numbers since then have been very stable it was an anomaly...nothing to worry about.
- Her skin color has changed significantly in the past 12 hours. She has some jaundice, and her bilirubin levels have gone up a bit since yesterday. These levels aren't overly alarming at this point, but the number did go up, so not great. They have a phototherapy lamp on her to counteract this and are monitoring it at this point.
We need prayers that she will lose the edema. The edema is being caused by whatever has made her sick, but causes challenges to her ability to breath on her own. They have consistently said that fluid levels and edema can decrease quickly (within a couple of days) or can take weeks to subside.
Thanks for all the encouragement and keep those prayers coming!!!
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