Tuesday, December 15, 2009

I hate when I get lazy about posting because it takes so long to get caught up. Everyone is better, finally. Olivia kept coughing for what seemed like an eternity after the cold was actually gone, but even that has faded over the last few days. If it doesn't warm up just a little so they can take the dirt bike out again we may have a mutiny.

The results of Tomas' 24 home monitoring study came back, and on room air he desatted 248 times in 17 hours, that's an average of 14 drops an hour. The low O2 levels were in the 70's and he had bradys down into the 20s to go with them. His pulmonologist thinks it could be from aspirating his saliva, or severe reflux and wants to talk with the GI and ENT to see what to do next. She also wants to run it by cardio to make sure they are ok with it. She has moved him to O2 support 24/7 until they figure it all out.

I started some bolus' into his g-tube and they have gone relatively well. He has a tolerance of about 3 ounces every 3 hours. 4 ounces cause him pain. After too many consecutive g-feeds though he becomes very fussy and uncomfortable. When I give him a break for few days he's back to his normal self. After discussing it with GI he says to just do what he can tolerate and hope it progresses with time. The thing that stinks is I don't know what he can tolerate until I find out what he can't tolerate and by then I have a miserable baby on my hands. GI ordered a renal ultrasound (follow up from a possible issue from months ago) and a PH probe.

I took him to see the surgeon to make sure the new hernias were nothing to worry about. They aren't unless they get trapped. However, the surgeon now want to move up the nissen repair and internal hernia repair due to all the desats. He ordered a swallow test but I am still not sure what he is looking for, or what that has to do with the surgery. I'll have to get that cleared up. I am in no hurry to do that surgery and it will take a major health benefit for me to agree to it.

During the O2 home study, I noticed that our regular machine was desatting even more often and deeper than the study one so I called home health to have them come and calibrate ours. Instead they said I needed a better machine that wasn't so sensitive to movement. So they brought out this honker 7 lb machine and took away my nice compact handheld. Truthfully, I could've refused but I do have to say the new machine alarms so much less than the old one and it has a delay feature so I don't have to worry about 5 second desats. The downside to it is that it needs to be plugged in and it is really heavy. I ordered an adaptor for the car, but still don't know what to use for when we are out and about. If anyone has a handheld (not fingertip) they like that is affordable please let me know.

Today, he had the swallow study that the surgeon ordered. It was pretty much the same as last time. Fine with honey consistency, pooling (although less this time around) with the nectar consitency, and aspirated on the regular consitency for formula. The upper GI showed the formula just filling the herniated part of his stomach and then sitting in his esophogus. Gotta love the J-tube, it is so my friend.

I had a great day with the kids yesterday and today we returned to school for a little bit, just a refresher since we haven't done anything since the week before Thanksgiving. We have family coming into town on Fri. I may not get Christmas cards done this year, although I am still striving for early next week even if they will be late. I have not wrapped one present yet. When the end of the day comes I am so tired I just can't. I am thinking I may have to take Tomas and go hide in my closet with the wrapping paper during the day or it is just not going to get done. Ugghh, and seriously, where does all that laundry come from????

Love to you all,


  1. Ugghh is right! Oh how I despise the oxygen. I finally wrapped a few presents tonight - a week too late - my daughter already saw the box in the closet. I lied and told her I was hiding it for the neighbor! Good luck :)

  2. Have they checked his airway at all? It is so common in DS kids, and we just found Jax has tracheal malasia, even after the trach, its crazy!