The night started out as expected. I had just drifted off to sleep when beeps started going off. I assumed it was his pump line crimped again, but it wasn't. His IV bag had run out. The nurse came in and switched out the bag. He did vital check at that point as well since it was 11:30 and vitals were due at midnight! Wow! A nurse who combines visits! It was nice.
Around 1:30 Levi's O2 sensor kept going off for heart rate declines. I got up and set by his bedside for awhile. As he seemed to be breathing fine I assumed it was the sensor and tried moving his foot and legs and making sure it was on his toe well still. The nurse came in and said that he has been monitoring it from the nurses station and had already called the doctor who had agreed to reduce the alarm limit and they thought he was probably just in a deep sleep and the sensor wasn't picking everything up. But the doctor would be in himself to do a manual check. A few minutes later the doctor came in to do the check. How he didn't wake up Levi I have no idea. Unlike the Nurse who has been sneaking in and trying not to wake up anyone, the doctor just burst in the door, lights on, loud talking, it was kinda nuts. He said his pulse and heart rate were fine manually and agreed it was probably a sensor issue.
I attempted to get back to sleep again. Around 3:00 the Nurse was back in to give Levi another dose of antibiotics. Since we still don't know what caused any of this we are still on large dose strong broad spectrum antibiotics. He did great at putting the antibiotics in through the pump.
Around 3:30 he was back for the next set of vitals. This didn't go as well. Although he tried very hard not to wake up Levi he had to roll him because he couldn't get to an arm for blood pressure. Between rolling him and the super loud velcro noise of a blood pressure cuff Levi was awake. After the nurse left I set with him for quite awhile rubbing his back and trying to get him back down. He wasn't really having any of that, so I climbed in bed with him and we cuddled for 2 hours. Levi fell back asleep only a minute or two after I was in bed with him.
Around 6:00 I got out of Levi's bed and moved back to my chair to get another hour or so of sleep. Levi barely even stirred. Around 6:30 the nurse came in to take blood work and to ask what time Levi needed his morning medication. I had no idea he was in the room until he was talking to mom to ask the question. I didn't even know he had taken blood, another amazing power of a port.
Around 7:00 Levi was awake. We got his meds during shift change and ordered breakfast. He seemed more himself this morning. He asked for food and his tablet. His color was more normal and he was much more talkative.
We were waiting for blood work to come back. If his platelet count had continued to fall we would be needing another infusion today and probably staying longer. If the blood culture came back with a specific infection we would be staying for more specific antibiotics and making sure the infection leaves his systems.
Dr. C came in during rounds with his labs. His white blood cells were back in the normal range and his platelet count had risen to 111! Not a great rise almost 24 hours post infusion at this point, but a rise none the less. We talked to Dr. C for a few minutes about her thoughts. She said they still don't know what caused anything but that her and Dr. V had discussed things and at this point they do not want to do another infusion. We need to redo blood work at home on Thursday and see what it's doing, but that the infusion (even with reaction) should be working and we need to let his body do its thing.
That's great news!! We are going home!! Of course we probably still have several hours before actually getting out of here, but at least we know that we are going home today! The nurse came in and deaccessed Levi! That was great! He was finally able to roam and explore and that was muchly needed by everyone! The first thing he did was play with spaceman!
The paperwork was started for Levi to get out of here so we got him dressed and he kept on exploring! Playing with the bed, standing with spaceman, and playing cars. This is definitely my little boy back!
We signed the last form and got released at 11:15am! We are outta here!! We got to the car and I asked Levi if he wanted lunch! He said "Yes"! And then I asked if he wanted to go to McDonald's and he said "Yes! I want Chicken Nuggets and French Fries and Chocolate Milk!" Yup!! That's my boy!!! I am so glad he is himself again!!
It was a very scary ordeal and I am so glad that I had my mom by my side to help me get thru it. I am glad that Levi is doing better! Now I just need his platelets to increase so that we can avoid another infusion right away. I think I am going to be back in paranoid mode for a little while. I had let my guard down to much with things and it needs to get back up. Back to having extra clothes and things in the car, back to checking things multiple times, back to being on edge! But for today I am lucky to be taking my little boy home after just 24 hours in the hospital. It's been 18 months since we were inpatient last time. Hopefully we can go at least that long again!
praising God your mom was there with you for this scary situation and that levi got through it and there wasnt a different outcome
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