A Lil' Boy's Journey to Live….

On Monday afternoon I spoke to Katie from Riley’s Pulmonary team. It appears that Riley has tested positive for Pseudomonas again. Riley tested positive for Pseudomonas while he was still in the CICU after Transplant. At that time they said that Riley would have
Pseudomonas until they were able to remove the breathing tube. Obviously we ended up traching Riley so technically he still has a breathing tube or artifical airway. The true cure to Riley’s Pseudomonas would be to remove the trach! Hopefully next Monday we will be scheduling to do that by the end of October.
Until then .. because he is testing positive again we need to treat it. Pseudomonas could potentially be fatal so we can’t wait for Decannulation.
We are going to treat Riley’s Pseudomonas with Cipro and a inhalation med Tobramycin or Tobi.
Tobramycin is a pretty powerful drug and very expensive .. around $7,000. That being said we are waiting on a pre authorization from the insurance company and then there is only One pharmacy that our insurance will get the med from. It could end up taking a week to get the medicine which seems to be ok but kinda boggles my mind a little.
So we’ll start the Cipro Tuesday and wait for the Tobi.
Riley will see Dr Javia next Monday and we should be scheduling his PICU stay for Decannulation soon to follow.
Riley is ready to Throw his Trach in the Trash .. Literally and it can take the Pseudomonas with it .. ♡♥

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Comments on: "The Return of Pseudomonas .. ♡" (2)

  1. Carol, sorry to hear about the pseudomonas, I also had this last sept. & Im going togive you a heads up, tobi tasted horrible if I remember correctly ! but it did the job , The good news im seeing is removal of his trac, how great will that be for Riley . He will be a free man 🙂 hes still my little hero . Im always praying for riley & the family ! this time itll be alittle stronger praying 🙂 hang in there mom & little man . sending higs & a smile ((((((hugs))))))

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