Written Mar 9, 2012 4:59pm by Hillary SirmonBenjamin’s extubation attempt will be put on hold until Monday. Although he has done very well with his breathing, the doctors are concerned about his secretions and how much they are having to suction him. On a good note, he is doing a better job moving his food along, and they were able to increase the amount slightly.
We have had so many good days, and I do consider today another one, but I am fearful of the options ahead if Benjamin does not improve with clearing his secretions. I pray that over the weekend, all this will improve so extubation on Monday is successful.
Benjamin has had a good day, but I have been a little more down than usual. It is difficult watching other babies in the NICU be prepared for discharge knowing we have such a long road ahead. (though I am very happy for them and their families) We are so blessed that Benjamin has continued to progress… I just wish it was a little faster. 🙂 If Benjamin always moves at this pace, we are in trouble when he starts school.
A Miraculous Week
Written Mar 11, 2012 7:54pm by Hillary SirmonThe past week has been absolutely amazing and Benjamin has fought so well. He has improved with his breathing and is on the lowest settings on the vent before extubation. His intestines are finally starting to become more active passing food through quicker. He is also starting to move his arms and legs making diaper changes and blood pressure checks a little more difficult for the nurses. It was been so wonderful being able to hold Benjamin almost every day.Tomorrow is to be a pretty big day. The doctors will attempt to remove his breathing tube. Even if this does not go as planned, I am just excited that it can even be considered. We should have additional genetic tests returned tomorrow, and Benjamin’s feeds may once again be increased.With prayer and support from our family and friends, KC and I have found a sense of peace with all of this feeling very blessed to be able to watch Benjamin continue to improve. That definitely doesn’t mean that I don’t have my moments, but I am so lucky to be the mom to such an adorable and strong little boy. We have been surrounded by such wonderful family and friends. Your gifts, prayers, company, and thoughtful words have made this difficult situation so much easier. Thank you for taking this journey with us. I hope you find as much inspiration from Benjamin as we have. He has changed my life forever. 🙂And Benjamin says, “Who Dat?!” I just can’t wait until his first Saints game.
Written Mar 12, 2012 4:58pm by Hillary SirmonExtubation is put on hold til Tuesday. I will not express my frustration at this time. 🙂 I will update everyone tomorrow.
Written Mar 13, 2012 3:23pm by Hillary SirmonBenjamin was extubated and changed to CPAP(continuous positive airway pressure through his nose) at 10:45 am. His blood gas level following extubation was pretty poor, so another test was repeated an hour later with much improvement. His last blood gas was slightly better, and he must continue to improve to avoid re-intubation.
At this point, we are not fully out of the woods on the possibility of re-intubation, but Benjamin is working hard and we have great hopes for him. You can really see the fullness of his cheeks now and he looks even more beautiful than I expected. (Just like his sisters)
One Step Forward and Two Steps Back
Written Mar 14, 2012 7:08am by Hillary SirmonKC and I received a call this morning at 4 am from the hospital stating they were having to intubate Benjamin. By the time I arrived, Benjamin was intubated. His blood gas following intubation was much improved from the previous test and he looked relatively comfortable. I am not sure at this time if they will attempt to extubate him again or if they will go ahead with a tracheostomy. The main concern is that Benjamin is not able to clear his secretions, even though he can breath on his own. Benjamin gave it his all for 18 hours. We will just have to wait and see where we will go from here.