So, we had a crappy week. Thursday, we were supposed to try extubating, but Oakley got a fever Wednesday night, and wasn't feeling too hot. We lowered the vent settings Thursday morning, but he couldn't keep up, he desatted and had too much mucus to handle. The tests have come back, and it's all normal flora from the mouth, but is aggravated by his ETT (endo-tracheal tube). We had a care conference where we thought we'd be discussing logistics on getting to Boise, and the doctors had already decided amongst themselves (before we were invited to the conference) that the only way to continue was by giving Oakley a tracheostomy. I felt like they were giving up on trying to heal him, and were not giving him a fair shake on getting his tube out. They said that Oakley couldn't be transported until his airway was stable, so 2 weeks vent free or tracheostomy 7-10 days post-op.
I had to give Oakley another shot, so we extubated Oakley on Friday, he got scoped on his upper airway, then had to be re-intubated within seconds. Ear Nose and Throat did the scope, trying to look and see if there was anything in his upper airway that was causing him to not be able to successfully extubate.
So, to make a long story short, Oakley gets a tracheostomy tomorrow morning. They will scope the rest of his airway to see if they can find a reason for his inability to be extubated, and then they will carve a hole in his neck for semi-permanent airway support.
You may wonder why I am so upset at this...it takes much longer to wean off trach support compared to vent support. It bypasses his vocal chords, I haven't heard Oakley's laugh, cry, or coo since December 13th, and the tracheostomy will make that exponentially longer. I hate that we've missed out on so many normal milestones, and the prospect of not hearing first words for months, even years is a lot to manage. We wanted a second opinion in person from Boise before going through with the trach...but in order to transfer him there safely, his airway has to be secure. So here we are. More than anything, we want to be in Boise, so we are going against our own wishes for Oakley tomorrow morning. I am so excited to see his smile, but I miss his voice so much already, I will surely be a wreck.
So we are doing everything in our power to come home as soon as possible. We love and miss you all.
I had to give Oakley another shot, so we extubated Oakley on Friday, he got scoped on his upper airway, then had to be re-intubated within seconds. Ear Nose and Throat did the scope, trying to look and see if there was anything in his upper airway that was causing him to not be able to successfully extubate.
So, to make a long story short, Oakley gets a tracheostomy tomorrow morning. They will scope the rest of his airway to see if they can find a reason for his inability to be extubated, and then they will carve a hole in his neck for semi-permanent airway support.
You may wonder why I am so upset at this...it takes much longer to wean off trach support compared to vent support. It bypasses his vocal chords, I haven't heard Oakley's laugh, cry, or coo since December 13th, and the tracheostomy will make that exponentially longer. I hate that we've missed out on so many normal milestones, and the prospect of not hearing first words for months, even years is a lot to manage. We wanted a second opinion in person from Boise before going through with the trach...but in order to transfer him there safely, his airway has to be secure. So here we are. More than anything, we want to be in Boise, so we are going against our own wishes for Oakley tomorrow morning. I am so excited to see his smile, but I miss his voice so much already, I will surely be a wreck.
So we are doing everything in our power to come home as soon as possible. We love and miss you all.
They let me hold him since I hadn't in weeks, here we are with all our tubes. Because he has a difficult airway, there has to be two people in the room to transfer him from his bed to my arms, it's quite the ordeal. We won't get to hold him again until his stoma is healed enough to change out the tracheostomy tubing, which can take 5-7 days, so here are our last snuggles for another week.
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| We've worked so hard on getting that double chin! |
And yesterday, Oakley got a terrible rash with hives, turns out he's probably allergic to strawberries, and is off breastmilk until Wednesday to rule everything else out. Eventually, we will either test it again by having me eat a bunch of strawberries and then nursing him or expressing the milk to see if he gets the terrible rash, or talking with the Allergists to see if they think a stamp test would work on his immuno-suppressed body.
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| The last of the rash |
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| Last pictures of his un-scathed neck |
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| to be fair, it's not like he's scar-free...but his dialysis catheter scars aren't too bad. |
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