Heath's Journey 3/3/10

mujul79's picture

Wow I can't believe it has taken me this long to sit here and type all this out. Firs off sorry for worrying anyone after the surgery. Life has been crazy with us packing for the move and add in his recovery and I just don't seem to have the time I used to. I just had to send the kids to play for a min so I could even take the time to write now.

As most of you know Heath had his surgery on Feb 16th. It was slightly delayed because the ENT had an emergency operation come in before us but lucky for us Heath fell asleep on a wagon ride and did not notice.

It felt like forever from the time we kissed him good-buy until anyone came back to talk to us.

A little while after we got lunch (David sat with me) the Air way surgeon came out to speak with us. They did a scope of his lungs and all his structures are normal!! He had no infection or fluid in his lungs. This was good news because the chest x-ray was showing some "thickness and gunky" her words not mine. But he has what looked like to her as reactive airway. His airway all the way down to the top lobe on the left side and the middle lobe on the right side where inflamed and swollen. This means he is in a chronic breathless state and solves some of the the need for the o2 24/7 and not just when he sleeps for the apnea. They did a wash of the lungs where they put a fluid into them and then sucked it back out. This fluid will be tested to see if they can find the cause of the problem. It is normal for them to suck back out 75% of the fluid they put in but in Heaths case they only got 50% back because of all of the swelling it was hiding in pockets. He was given a steroid treatment during surgery to prevent the remaining fluid from causing an infection.

At the 2 hour mark the ENT came out and said the ear tubes where replaced and he was able to put in bigger ones this time that should last longer between surgeries. He also told us the scope he used looked at the voice box and it looked normal. He took a biopsy of the tissues above it and sent it to the lab to check for any signs of reflux. The adenoids where taken out but ENT left the tousles. The tousles looked to small to offer a benefit to be removed and can have a post-op bleeding risk so the ENT did not think it was worth it to remove them at this time.

The ABR (hearing test) showed Heath is hearing impaired still and now with 2 ABR's 6 months apart we can say almost for sure now that he will be hearing impaired for life. He will keep using his aids.

As soon as he came back to his room he wanted to nurse. As he was nursing he managed to remove his IV and bleed all over me and him. LOL he was less happy about being taken off the boob to be cleaned up then he was upset about the cut he caused at the site.(David left at this time)

We stayed 23 hours in the hospital and Heath was given, morphine for pain every 4 hours.

We where sent home with codeine every 4-6 hours, ear drops and Rx amox, to prevent infections. And told to use the breathing treatments every 4 hours around the clock and keep doing what we have been before surgery with the O2. He sounded worse after surgery then before because of the fluid still in his lungs.

He cried every 4 hours for the first week and was hard to calm down until after the meds hit his system. March 1st I weaned him to Tylenol every 4 hours instead of the codeine and only using the codeine at night. This around the clock pain management/treatments has caused us both some sleepless nights.

On the 25th we returned to Heath's primary care. She let me look in his ears (the tubes are now blue the old ones where white) Talked about his recovery, my worry about how his breath smelled and stools. First caused by scar tissue and the 2nd from the meds. She said she thought he sounded better then he ever had to her at that visit.

Monday was his first day having PT back and he was doing well, cursing the sofa!!
Yesterday was his first day back to school. (I volunteer at the church preschool and take him with me)

Today is the 16th day after surgery and I have not given him any meds since 3am, he has been fussy now so I will give the meds tonight but try only Tylenol. I feel bad for him I had my tousles removed at 23 and know how I felt the first 3 weeks.

Big question everyone keeps asking is "do you think it worked?" And I was told not to see much of an improvement in the first 3 weeks of recovery. On Friday the 5th we go to the ENT for his post-op visit and I hope they will have the biopsy and lung wash cell results at that time. If it is reactive airway he could be put on steroid inhalers.If it is that he is aspirating acid he will be put on reflux meds. If not I am not sure what the plan will be other then to just keep doing the treatments every 4 hours.

All I can say is he is eating well and dose not fight me so much during diaper changes or other times where he has to be on his back. (position since birth he hated, because of the obstruction)

Thanks for reading. He is crying now. I am sure I missed something but that will have to do.