Well A went into surgery last night for his tracheostomy about 6:30pm and at 8pm we got word from his ENT that all went wonderful. We were able to see him in the PCCU very shortly after. He is on a lot of medications for sedation however he is NOT sleeping.
Right now he is currently on the ventilator (life support) but is taking some breaths on his own above the machine. They want to keep him very sedated and pretty still for another 24 hours before they even think of weaning him off the meds and the vent.
I have a lot of emotions right now but so far I feel okay with what has gone on. It was a VERY tough decision and I hope that I never ever have to make one like this ever again in my life!!!!
Here is my tough little guy….
Keep the prayers coming….we have a LONG road ahead of us. He has been a very good boy though for mommy so far on her birthday which is the best birthday present EVER!!!!
Well started out as a good day. A had been doing all of the breathing on his own for quite some time by the time I got there this morning with grandma. He was on very minimal support. Had a great day with only one desat and sleeping contently (no sedatives).
3pm we decided to try and extubate. He was awake and I would have thought he was ready if they asked me. Tube came out and it was horrible. He would NOT breathe. The doctor started yelling out meds that she needed and sizes for intubation tubes. I asked for her to give me a few seconds to try and calm him. She was kind of angry as at this time his saturation said 14 but I wanted the few seconds. They continued to bag him and I got him pretty calm. He was satting 100. But unfortunately as soon as they stopped bagging he would go very very blue and just not breathe. It was very scary. It was like he just didn’t care. It was not agitation at all causing his problem.
A code was called and within minutes there was a room full. I was still leaning over the bed holding his head in my hand and rubbing his head with my other hand. I was crying. I am just SO angry. So upset. I just don’t understand.
When they went to intubate again I left the room bawling my eyes out. My heart is hurting. I feel so guilty for all the bullshit he is going through. I know I don’t have to but as a mom watching her child suffer I do.
So he is sedated again and on a rate of 25 with oxygen of 50.
Oh, he did hapen to grow a moderate culture of pseudomonas. However the doctor does not think that it would have made him this sick and it does not explain the ordeal today.
They started giving him dex at a dose of 5mg every six hours for four doses.
I’m just one scared mommy.
Well my little man is home and he is doing well! I am so happy that he is back to himself and feeling SO much better. Hard to believe by these pictures that this was a kid that was just on life support!!!! (I took these the night I brought him home)
I am hoping soon to have pictures up from the wedding so watch for those!!
Thanks to everyone for all the good wishes, prayers and thoughts!!!!!
Well A has come off of the vent (was not a fun time!!!) however he is still sounding the same as the day that he was intubated. The doctor from ICU switched his antibiotics yesterday as he has not gotten ANY better and is needing a TON of suctioning. He is having tests done today for Chlamydia psittaci. Long story short, the lady who lived where we are before us must have had two or three birds. It was NASTY to the point we washed the walls, ripped out carpet and replaced it and so on. Well it was the Tuesday A was taken into the place and then Thursday morning he woke up with the fever and then went downhill. Because he has not gotten any better the doc feels it is worth a look into. I was really hoping to have him home by now….but I guess it might be a while. The doctor said yesterday that he “may” have to reintubate. Fingers crossed we don’t go there. The other interesting thing the doctor said was that sometimes kids with neuromuscular disorders and so forth go onto the vent and when they come off have lost their muscle tone that was there. Meaning that this is always a possibility as we are waiting on genetics still. So the suctioning could become a daily need. Praying that it won’t be.
Well nothing has changed. He is still intubated and heavily sedated. Swabs were done yesterday to see if anything shows up or grows. I was told yesterday that his lung x-ray was patchy and they are treating as if it was bacterial pneumonia. However they do think if it is then it is viral. The doctor also said that his x-ray does not really match how sick he is. So no real answers. Thanks for all the thoughts and prayers.
Just a quick update as I don’t really have time and I have SO many people asking where we have been. A is currently in the ICU on a ventilator. Doctors believe at this time that he is fighting a double pneumonia. I will update as things happen. Please pray for him.