Joey was awake AND happy!
I feel like I'm at that point in this journey where I literally need to rejoice in every stable day in Joey's life. He's still pretty critical and needs a lot of respiratory support, but he is at least somewhat stable. The battle we are fighting now is the secretions that are building up from the tube. It's very scary. If you don't become very proactive with it, the secretions can become infected and also cause pneumonia. It can also affect the compliance with your lungs, and I want Joey in tip top shape if he is going into surgery. I have to admit, I am extremely nervous about this surgery, because he is not at his best right now. These T18 babies are so extremely fragile. Anything can rock their world-including surgery. I've got to trust my Lord and Savior to get us through this. We walk in faith and not by sight. Joey started the day off yesterday at higher oxygen needs at 53 percent, but he weaned down to 35%. Daniel walked in on him needing 46 %, but his PINSP level was in the 20s. I'm sure that was probably due to receiving his percussion therapy. It was hanging at his cap amount of 35 yesterday and at some points he was not reaching his projected tidal volume goal, but yet he required little oxygen and was saturating in the mid to high 90s. I think this tells us that he has a difficult time with expanding his lungs to get to the achieved tidal volume, but he can oxygenate well. Is this why we used to see his work of breathing challenged back in the day when he didn't have all this support? I also noticed that once he received his airway clearance therapies, he was able to go down on his PINSP telling us that his lungs were more compliant. His lungs also become more compliant and he requires less oxygen when we reposition, so would that be an indicator that his lung compliance is based more off of airway obstruction as opposed to scar tissue. There is a correlation with lung compliance-airway obstruction whether it be anatomy or secretions, edema (liquid), pulmonary hypertension (which he did not respond to nitric), scar tissue from previous intubations etc. The question is what is the source of needing more support for his lung compliance? The only thing I can ascertain is that there is a correlation with lung compliance based off of therapies
Yesterday, Joey woke up and was playful for a couple of hours. We got the old Joey back for a little bit and it made me so happy. We face timed with family members, I brushed his hair, and got all my essential oils out for him. I also pulled out all my massage therapy techniques. I went to the store and bought a facial massager to massage his back and chest. I think the vibrations will help to get some of his secretions moving. A neighbor also purchased a small massager to help me massaging his back as well. I think it will be a good addition to his percussion therapy that he is receiving. I think I may have gone overboard with all the facial massage items I bought, but I am super paranoid about getting all the junk out of his lungs. I joked that they are going to name a new respiratory therapy after me.
One thing I have observed about some physicians is I can tell that some are a bit negative about the outcome, and I wonder how it impacts Joey's care? It ends up being a voice in my mind, that I don't need to entertain. I think some doctors are very surprised that Joey has made it this far. One of Joey's doctors was willing to pull out all the tools to get him going and she was very positive. I am thankful that I had her in his corner, and I need to tell her that when I see her again. Something is rumbling in my mind though that if I don't have a doctor that shares Joey's same mind set of survival and gives up too easily and quickly because he or she doesn't think he can pull through, I am concerned that it will impact his care. This is something that I am going to be very cognizant of, and am thankful that I have other medical professionals that are willing to brainstorm with me.
They also had to decrease his verset dosage because his heart rate was so low to see if we could get that increased again. There are talks rumbling about his surgery happening soon. I am EXTREMELY nervous about this, as I know this could be the last days that I see my son. This is where I have to become extremely reliant on God, and give Him my everything.
Yesterday, Joey woke up and was playful for a couple of hours. We got the old Joey back for a little bit and it made me so happy. We face timed with family members, I brushed his hair, and got all my essential oils out for him. I also pulled out all my massage therapy techniques. I went to the store and bought a facial massager to massage his back and chest. I think the vibrations will help to get some of his secretions moving. A neighbor also purchased a small massager to help me massaging his back as well. I think it will be a good addition to his percussion therapy that he is receiving. I think I may have gone overboard with all the facial massage items I bought, but I am super paranoid about getting all the junk out of his lungs. I joked that they are going to name a new respiratory therapy after me.
One thing I have observed about some physicians is I can tell that some are a bit negative about the outcome, and I wonder how it impacts Joey's care? It ends up being a voice in my mind, that I don't need to entertain. I think some doctors are very surprised that Joey has made it this far. One of Joey's doctors was willing to pull out all the tools to get him going and she was very positive. I am thankful that I had her in his corner, and I need to tell her that when I see her again. Something is rumbling in my mind though that if I don't have a doctor that shares Joey's same mind set of survival and gives up too easily and quickly because he or she doesn't think he can pull through, I am concerned that it will impact his care. This is something that I am going to be very cognizant of, and am thankful that I have other medical professionals that are willing to brainstorm with me.
They also had to decrease his verset dosage because his heart rate was so low to see if we could get that increased again. There are talks rumbling about his surgery happening soon. I am EXTREMELY nervous about this, as I know this could be the last days that I see my son. This is where I have to become extremely reliant on God, and give Him my everything.
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