Today was a good day. Ella actually got some pretty good sleep last night. Instead of waking up every two hours for her treatments, per her usual, she only had to get up twice over night, at midnight and then again at 4. Armed with a good night's rest she was able to tolerate her daily treatments a little bit more effectively. The breathing treatments still take a toll on her, but getting more sleep overnight certainly works to her advantage. Her oxygen saturation was a little low during the morning and early afternoon. Her respiratory therapist attributed this to the fact that her secretions were significantly looser than they have been all week and that there are more of them because the intubation tube is moving around, which slightly irritates her airway, thus causing more secretions. As we continued to stay on top of her treatments her oxygen level steadily improved throughout the day and her secretions lessened.The increased secretions and throat irritation pointed to another issue. The tube inserted into Ella's mouth that goes down her airway is called an endotracheal tube. One end of the tube is connected to the ventilator that delivers oxygen support along with positive pressure to keep her lungs inflated and her blood oxygenated. On the other end of the tube is small balloon, this balloon is referred to as a cuff. It is through the cuff that gases are directed into the lungs. The cuff is meant to seal the airway against leakage of respiratory gases so that her lungs stay inflated as well as prevent aspiration from stomach contents, blood, secretions and other fluids. In other words there shouldn't be a leak around the cuff. Ella's cuff has a leak; there are times, depending on the way she is positioned, where we can actually hear air getting past the leak.
Thank God, up to this point she has not aspirated any of the feed getting pumped into her stomach. But because there is a leak she is not getting all of the pressure support she is supposed to be getting. Which means the endotracheal tube is not doing everything that it is supposed to be doing and everyday that the tube stays in Ella's already weak diaphragm, gets weaker. Weaker diaphragm means it become even more difficult for her to cough and clear secretions on her own, this leads to increased chance of mucus plugs and respiratory failure. For these reasons it was decided today to remove the tube tomorrow sometime between 12 and 1 pm. While we would prefer the tube to be coming out under different circumstance we are pleased that the tube is coming out. However, it is the process of removing the tube that represents a significant risk. The first time our baby went into serious respiratory distress was when she was extubated as an infant following her muscle biopsy. This is what lead to our first ICU stay at CCMC in Hartford. 
We have been talking about extubation since last Thursday when she was intubated. Mommy has provided the team with some of research and guidance on the best way to approach this process to avoid leaving our baby with more secretions than she is able to clear on her own. Everyone understands that we absolutely need to get his right.We are sharing all of this not to present some dire picture of how bleak things are, but rather to be completely transparent as to everything that we are dealing with and to give you enough details so that you know exactly what to pray. We are asking Jesus to allow the removal of Ella's endotracheal tube to free of complications and to leave without extra secretions. We are praying that when the tube is removed it will not need to re-inserted at a later date. We are praying for a smooth transition from the tube back to her bipap ventilator. We are praying that the bipap would deliver the right about of pressure support Ella's lungs need to recruit and stay inflated. We are praying that tomorrow marks the beginning of Ella's full and complete recovery according to God's perfect timing.
Thank you for standing with our family, thank you for not giving up, for not getting tired, for not getting bored, for not loosing faith. Thank you for your love. Tomorrow is going to be a great day. We are all more than conquerors.
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