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It was my turn to sleep in the bed at the room overnight while Kelsea stayed with Hayden Saturday night. Although he had an increase in mucus on Saturday, things were pretty good when I left for the night. Hayden's vent settings had come way down and as I had mentioned in last night's post, there was a very, VERY specific plan put in place in order to effectively take away the narcotics and replace it with a different analgesic (drug that produces an anesthetic like state) so he wouldn't be in pain, but could still breathe on his own during the Extubation Readiness Test.
I woke up around 5 and read a message Kelsea had sent shortly before that. They had done a trach aspirate (culture checking for bacteria) due to his increased mucus and it came back showing some bacteria growth. This basically means that there were signs of bacterial growth in Hayden, and possibly even his lungs. Kelsea also said that Hayden's heart rate and blood pressure had dropped significantly at one point because he was too sedated, so they stopped the analgesic to bring him back.. When I showed up, the resident stated that these don't necessarily mean they wouldn't extubate, but they would have to have a serious discussion about everything during rounds. He said we don't want to hurry things and cause problems. I agreed, but I was heartbroken. I went to bed thinking the next morning was going to be great and woke up struggling because I thought God's plan was leading us in a different direction than what I wanted. I know, I should be used to that by now, but I wasn't! I could tell in his voice that the doctors didn't think it was going to be a good idea, so I texted mom and dad the disappointing news and started my morning ritual of standing by Hayden, talking to God, and waiting on rounds.
As the discussion got under way, I don't think I even had my notebook of questions, daily goals, data, and notes with me. I was just kind of there. As they discussed the overnight happenings and looked at the morning x-rays, I was only half paying attention because I knew what was coming. When the resident brought up the culture, the Attending Physician, as they always do on rounds, just like you would see on any medial show, started presenting scenarios and asking questions about different outcomes. He asked a little more in depth questions about the results from the culture and asked a resident what that suggested. His response was, "Correct. Ventilator Associated Pneumonia which the biggest way to prevent that is to yank the tube." When he said this, and acted like he was ripping something out of his mouth, my ears perked up. It was one of those moments (Kelsea could describe them for you) when I was overcome with joy. It was like a ton of bricks being lifted off of my shoulders. I called her in the middle of rounds and told her to get over here. I was kind of a nervous/excited mess and the adrenaline was flowing through me because I was so excited to be able to hear Hayden again. Within 30 minutes, the tube was gone!
When somebody is extubated, they have to make sure that the person can do several things. These include breathing at a normal pace, keeping heart rate at a normal pace, keep there blood oxygenated, and not struggle to breathe. Well, Hayden was struggling with several of these. He had a lot of bubbles/fluid coming from his mouth, elevated heart rate, and was working really hard to breathe. After about 20 minutes, I suggested Kelsea holding him might help to lower his heart rate. Boy, was I wrong! Kelsea was a trooper though and did her best to console Hayden as he struggled, and cried, and twisted in her arms. He was not happy! Part of the problem is that he was given two doses of epinephrine to help open up his airways and help him breather. A side effect of this is increased heart rate. As time went on, I was afraid we were heading down the path or being intubated again. I didn't know exactly what was going to trigger the decision to do this, but I felt it was close. After about 90 minutes of him struggling, one of Hayden's angels (a doctor in disguise) came to the rescue. The same fellow who I wrote about Wednesday (who made the decision to bring him from the Surgery floor back to the PICU just in time to get him intubated) consoled Hayden for about 35 minutes straight encouraging him to suck on his pacifier which was dipped in "Sweeties" (sugar water basically). He was able to get Hayden to calm down so his heart rate dropped from about 228 (it was above 200 for at least an hour) to around 165. So many times, we have gotten to see the human side of doctors down at Children's. Looking at him trying to console Hayden, you would have thought it was his own son. He wasn't just pulling for him as a patient, but he was pulling for him because he wanted to see him succeed. I know this is there job, which they get paid for, but I can never thank everybody down here enough for what they do. His nurses. Wow. As they always have (especially in the NICU...ahem....shout out....kind of since I'm not naming names!) show their human side and love for their job day in and day out.
At 12:30 pm, after three hours, Hayden had calmed down and was doing well. Even though Kelsea and I really didn't do anything, we were completely worn out and emotionally drained. His tube was out and we finally felt like he was going to be succeed this time. Kelsea sent me down to grab lunch and I called dad and gave them the ok to come down. Hayden's Aunt Kelle was in town and wanted to see Hayden. She hadn't seen him since the first of February, so I was really hoping that things would be good enough for her to come down. While eating, his heart rate slowed even more and mom was able to go get something to eat. She also tried to go take a nap (since whoever stays in the room with Hayden usually doesn't get much sleep), but it didn't work for her! Hayden was worn out, but couldn't sleep. He was very restless and just wanted somebody to hold his pacifier in his mouth for him. He wanted to suck on it, but didn't have the energy to do both. Mom, dad, and Kelle arrived around four and were able to spend a couple of hours here. Hayden continued to relax and adjust to the oxygen that he is on now. They will continue to try to lower and lower the oxygen he is on, but at this point, I don't care if he have to strap a tank to the roof of Kelsea's car! He is still getting treatments every 2-4 hours from the respiratory therapist for junk in his lungs. He doesn't mind the tube they put on his chest which uses sound waves to break it up, but he DOES NOT like the mask they put over his face for the Albuterol. He is acting like putting a mask near his face and having him inhale 5-6 times is the worst thing that has ever happened. However, I guess I can't blame him because everything since Tuesday has been about his face.
He is sleeping now and I think he is going to sleep good tonight. This afternoon, there were several times it smelled like he dirtied his diaper, but hadn't Still good news though because it means things might slowly be waking up down there. His catheter was removed today as well as two IV's (not by choice.....more from him thrashing around). He has his PIC (we are only using one "C" at the end since it is technically not a Central line) and an IV in his neck. However, his nurse tonight is certain the neck IV has run its course and won't hold up much longer. That means he will have to have another one put in tomorrow in a foot or hand, but I am ok with that. They need the access. They are going to monitor him in the PICU for at least 24 hours. We told his doctor this afternoon that we are ok if it is 48 or even 72 hours. Right now, we are in no hurry to leave the PICU. However, we will be ready for the next step and goals. Not exactly sure, but these will include trying to wean him off of the oxygen and hoping his intestines "wake up" so that we can see if he will eat/digest food and start getting him to put on some weight.
I think there are at least ten things I wanted to say tonight, but forgot. However, the one thing I know is that God is watching over us. While Hayden was struggling, I know for a fact there were so many people and churches as a whole group, who were in deep discussions with our Father. He heard every single one of them and His path for us was once again laid out before our eyes.
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