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0mega6

@noCinErik • 8,553 subscribers

Retired US Army Captain (mustang). Combat veteran. Heart warrior dad. Autism dad.

Shorts

Evelyn has never been able to run, her entire life. She's sooooo close to getting those feet up and running.

Evelyn has never been able to run, her entire life. She's sooooo close to getting those feet up and running.

60,509 Aufrufe

Evelyn is back! The procedures went well. They did not pull her chest tubes, but I was kind of expecting that. Her new anatomy looks good. The most immediate concern with her blood flow turned out to not be an issue, thank God. There's a low chance that she'll need another surgery in a few months. They don't anticipate this, but it is possible if some of her pressures don't level out. Without going into great detail, this is what's causing most of the fluids on her left lung. The left lung itself has some significant issues. It is unlikely that surgery will correct the issues. For the foreseeable future, she'll require a whole lot of chest therapy and likely use either CPAP or BIPAP at night. The good news is that pulmonology is now actively involved in her care. That's something we've asked for over the past few years. TL;DR Evelyn's heart catheter and bronchoscopy went well. Her heart is functioning as expected. She has long-term lung issues that are being addressed. As always, I truly appreciate everyone's prayers, support, and love for my daughter, me, and my family.

Evelyn is back! The procedures went well. They did not pull her chest tubes, but I was kind of expecting that. Her new anatomy looks good. The most immediate concern with her blood flow turned out to not be an issue, thank God. There's a low chance that she'll need another surgery in a few months. They don't anticipate this, but it is possible if some of her pressures don't level out. Without going into great detail, this is what's causing most of the fluids on her left lung. The left lung itself has some significant issues. It is unlikely that surgery will correct the issues. For the foreseeable future, she'll require a whole lot of chest therapy and likely use either CPAP or BIPAP at night. The good news is that pulmonology is now actively involved in her care. That's something we've asked for over the past few years. TL;DR Evelyn's heart catheter and bronchoscopy went well. Her heart is functioning as expected. She has long-term lung issues that are being addressed. As always, I truly appreciate everyone's prayers, support, and love for my daughter, me, and my family.

30,222 Aufrufe

Just a little girl enjoying her swing at home.

Just a little girl enjoying her swing at home.

21,289 Aufrufe

Evelyn update. So, the transplant team is a bit confused by her results. She definitely has level 2 antibodie rejection, but the tests are a little contradictory. The technical jargon was a bit much to understand, but in the short term they're working on a plan. She'll probably have an Intravenous Immunoglobulin (IVIG) Infusion and Rituximab. We'll end up inpatient for a day or two for the treatment. I'm waiting on the team to tell us next steps. On a side note, getting her meds has been cluster foxtrot. It was a huge relief today when we got her refills.

Evelyn update. So, the transplant team is a bit confused by her results. She definitely has level 2 antibodie rejection, but the tests are a little contradictory. The technical jargon was a bit much to understand, but in the short term they're working on a plan. She'll probably have an Intravenous Immunoglobulin (IVIG) Infusion and Rituximab. We'll end up inpatient for a day or two for the treatment. I'm waiting on the team to tell us next steps. On a side note, getting her meds has been cluster foxtrot. It was a huge relief today when we got her refills.

17,337 Aufrufe

We've had a great family day. Evelyn is just so happy to be home. Lots of appointments next week, but we're just being lazy and enjoying each other.

We've had a great family day. Evelyn is just so happy to be home. Lots of appointments next week, but we're just being lazy and enjoying each other.

16,591 Aufrufe

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Evelyn is back on the move!

Evelyn is back on the move!

173,260 Aufrufe • vor 9 Monaten

Evelyn is finally able to be a little girl again. Her last chest tube was pulled this morning. We're moving back to the recovery floor today or tomorrow, and then.... home!

Evelyn is finally able to be a little girl again. Her last chest tube was pulled this morning. We're moving back to the recovery floor today or tomorrow, and then.... home!

77,924 Aufrufe • vor 9 Monaten

Evelyn's first walk without oxygen support. Thank you, everyone, for your love, support, prayers, comments, everything.... we've been through so much the past five years, and the last 114 days living at Texas Children's has been the hardest thing we've ever done as a family.

Evelyn's first walk without oxygen support. Thank you, everyone, for your love, support, prayers, comments, everything.... we've been through so much the past five years, and the last 114 days living at Texas Children's has been the hardest thing we've ever done as a family.

70,718 Aufrufe • vor 9 Monaten

Evelyn hit a HUGE milestone yesterday. I was crying filming this. Many of you know, Evelyn is autistic and nonverbal. Getting her to mimic sounds is a massive step towards speech. Have a great Friday everyone!

Evelyn hit a HUGE milestone yesterday. I was crying filming this. Many of you know, Evelyn is autistic and nonverbal. Getting her to mimic sounds is a massive step towards speech. Have a great Friday everyone!

10,493 Aufrufe • vor 1 Monat

Getting ready for discharge is hard work. Evelyn is the strongest person I know.

Getting ready for discharge is hard work. Evelyn is the strongest person I know.

53,602 Aufrufe • vor 8 Monaten

We're down to one chest tube! Evelyn is doing much better today. She'll be walking and sitting up throughout the day to give her lungs a workout and to regain her strength. She's on a 21% oxygen mix, which is the same as room oxygen. She still needs high pressure air to keep her lungs open, but we're weaning that today as well. She's likely moving back to the CPCU early next week (or sooner) for recovery and not soon after, discharge!

We're down to one chest tube! Evelyn is doing much better today. She'll be walking and sitting up throughout the day to give her lungs a workout and to regain her strength. She's on a 21% oxygen mix, which is the same as room oxygen. She still needs high pressure air to keep her lungs open, but we're weaning that today as well. She's likely moving back to the CPCU early next week (or sooner) for recovery and not soon after, discharge!

46,959 Aufrufe • vor 9 Monaten

Viva Frei I pieced the videos together. With subtitles.

Viva Frei I pieced the videos together. With subtitles.

109,256 Aufrufe • vor 2 Jahren

Update: Evelyn will likely be in surgery for several more hours. We're receiving text updates, and they have told us everything is going well. I'm trying to read everyone's comments, but there are A LOT. Today has been incredibly difficult on our family. Your love and prayers have really lifted us up. Thank you all. P.s. the video shakes a few times from text messages, and my phone is blowing up! P.s.s. I am grateful that this is likely the last sunset video from this room

Update: Evelyn will likely be in surgery for several more hours. We're receiving text updates, and they have told us everything is going well. I'm trying to read everyone's comments, but there are A LOT. Today has been incredibly difficult on our family. Your love and prayers have really lifted us up. Thank you all. P.s. the video shakes a few times from text messages, and my phone is blowing up! P.s.s. I am grateful that this is likely the last sunset video from this room

47,122 Aufrufe • vor 9 Monaten

There really aren't words to explain how awesome this is.

There really aren't words to explain how awesome this is.

15,483 Aufrufe • vor 7 Monaten

We're still overwhelmed by everything. We can't thank the team at Texas Children's enough. There's so much to be grateful for and so many people to thank. God is good.

We're still overwhelmed by everything. We can't thank the team at Texas Children's enough. There's so much to be grateful for and so many people to thank. God is good.

17,082 Aufrufe • vor 8 Monaten

In case you're wondering how Evelyn is doing, she's doing really great. Here we are at her happy place. Happy Monday everyone!

In case you're wondering how Evelyn is doing, she's doing really great. Here we are at her happy place. Happy Monday everyone!

11,833 Aufrufe • vor 5 Monaten

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