The days here seem to drag by SO slowly. We are just waiting for a point where everything "clicks" and Elizabeth is making enough progress to be discharged. The weekend started out good, with her being more awake and playful and ended with her having withdrawls and needing extra doses of methadone/ativan. They were weaning those drugs pretty quick in hopes of waking her up more and getting her to work her muscles and be able to get rid of CO2 on the trach collar. Apparently she just wasnt ready to give up the drugs :) She was awake for almost 24 hours straight Saturday, and super agitated on top of gagging/vomiting/diarehha. -FUN TIMES- But I think they have her in a good place now, she seems more calm and isnt having all those issues. Saturday day was actually the best day we have had so far. She was very awake, playful, smiling, and had two 2 hour trach collar trials. We were able to take her for a wagon ride in the hall by ourselves. She spent the entire time chewing on the mask we put over her mouth. But as the day went on, you could tell she was starting to withdraw. Due to her high level of aggitation she did not do any trach collar trials on Sunday, Monday or today. But we hope to resume them tomorrow. Tomorrow she is scheduled for an upper GI tomorrow to check the nissen fundoplication she has, which is supposed to be preventing her from throwing up/refluxing. But she has been able to throw up almost ever since she had the surgery for it back in August. So once we have this test done tomorrow, we will know more about if the nissen is still in tact or if she would need surgery to repair it, hopefully not! Over the weekend she started coughing alot more and needing to be suctioned more often. So they did cultures just to check her for viruses. So far nothing has came back. We are hoping she isnt getting sick on top of the withdrawals.
Other than the above we have just been hanging out. Trying to play with her and work with her as much as possible when she is awake. She has a long way to go to catch up developmentally, so we spend LOTS of time sitting her up. Her head control is great, but she still needs help sitting but is getting better. Sometimes it makes me sad to think she is 17 months old and cant sit up on her own, or roll over, crawl, walk or talk. But she will get there, in her own time! Another goal for this week is to get a passy muir valve for her to try. Basically its a one way valve that goes on her trach. She can breath in through it but has to use her upper airway to breath out instead of the air coming out of her trach. The passy-muir is usaully used as a talking valve, becasue it will allow us to hear her again :) But in Elizabeth's case, it has a second purpose. The hope is that it will provide just enough pressure for her that she will be able to wean faster from the pressure she needs from the ventilator. We are hoping to be able to try it out tomorrow. And part of the process for getting rid of the trach is for her to wear the passy muir and get her used to using her airways for breathing. So this will be a great step forward if she can tolerate it.
Thank you for your continued support and prayers. We are so thankful for each day. Even though there are many bumps in the road we are hopeful for the future!
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