Thursday, December 3, 2009

Well, that sore throat that Victoria was fighting 2 weeks ago has turned into a whole family sick, 5 doctor's visits, 8 medications, and one baby on oxygen sort of thing!

Poor Victoria woke up on the Monday before Thanksgiving with her whole face all puffy - off to the doctor she goes. Everyone else is pretty healthy until Wed. night when Tomas gets so stuffy he can't breathe (and you all know that means he REALLY can't breathe). So what to do, what to do - I just gave him some Motrin for the crankies and kept him on oxygen through the evening until he "sort of" fell asleep. He slept 1 1/2 hours all night. That means so did I.

Thursday morning I called the ped's office because he was running a low fever. Of course it was a nursing call center, but at least I had another opinion on how bad he needed to be before I had to give up Thanksgiving dinner and spend it in the hospital. She said as long as his fever didn't spike it was really just about his O2 sats. I kept him on oxygen for the better part of the day, and he did ok. I cooked dinner and made the Turkey, and thankfully he did not get to the point where he only wanted mommy until around 4 pm, when all the cooking was done. My mother, husband, and good friend all did a great job of getting dinner to the table and we actually had a very nice dinner. I'm so glad the home health driver left extra tubing with the oxygen compressor so I can pretty much make it through the whole bottom floor without having to switch to the portable (such a pain).

Friday morning off to the doctor's Tomas goes and Olivia gets added on last minute because all of a sudden her throat hurts. Nasty cold, but not RSV (thank God - still wrangling with the insurance company on the Synagis shot). Mike gets sick and the whole world is about to end until I lose it and pretty much tell him to suck it up, I slept 1 1/2 hours and cooked Thanksgiving dinner thank you very much! The weekend passes uneventfully. Victoria finishes her antibiotics on Saturday, Sunday we do not go to church because I can't imagine passing this gunk on to anyone else.

Monday morning Victoria wakes up with half of her face swollen and her lymph nodes are huge. Off to the doctor she goes again. Same crud, new antibiotics. Tomas had an oncology checkup that afternoon so off to Dallas we go. I find out our dear friends who spent Thanksgiving in our germ chamber are sick (so sorry!).

Tuesday, Mike takes my mom to the airport to fly home. There goes my laundry fairy, and my coffee fairy, and my helper fairy...

Wednesday, Tomas is still a mess and very congested and still running a low fever (really low - 99's) and bouncing his O2 levels all day, so I call the pulmonolgist. Sure enough it is starting to settle in his lungs, more antibiotics, more CPT (chest patting), more suctioning, more breathing treatments, etc... While there the Dr. went over his results from the 24 oxygen monitoring. He is desatting like crazy while awake (14 times an hour) and his heart rate drops with the desat (sometimes down into the 20's). She thinks it is from aspirating his saliva, so he gets a new med to dry up his salivary glands and then we'll see if it helps. Pray it does because the alternatives are pretty invasive. The other cause could be reflux, so Tomas also need the PH probe that the ENT wanted a month ago. The fix for that is the big nissen redo, hernia repair surgery.

Speaking of hernia surgery, the one earilier in the month to fix the trapped bowel went great, but now he has two new ones right around the surgery sight. It is such a lose-lose battle. The only reason he had this past surgery was because his bowel was trapped, and we will leave the new ones alone unless they get trapped too. It really, really is imperative that he gets a lot older before he has the big repair to fix everything otherwise his abdominal wall will not be strong enough to hold the repair.

The bright spot in all of this was his oncology visit. The new group pretty much dismissed him and only wants to check on him every six months. I have such mixed feelings about this. I am very, very glad and grateful that his levels have been stable for about six months. I am just so scared of being out here on my own. I know his pediatrician will do a CBC any time I ask, but just letting that safety net go is so hard. In the end though, it is good news.

I can be so hard to stop asking the why questions. I pray and ask everyone to pray that he doesn't need the big surgery for several more years, but then what happens if he does? Is it because we didn't pray hard enough? Of course not, it is because in the end this is all about God's plan and God's time. My job is to rejoice for this life that was handed to us, and to even rejoice for the struggles that came with it. The struggles have re-shaped us, and re-focused us, and re-formed us to the point where we are closer to living a faith filled life then we have ever been before, and that is truly something to rejoice about.

1 comment:

  1. OH you've got a lot going on! You handle it like a champ. Sending prayers for Tomas and hope everyone stays healthy for Christmas. They can't be sick for two holidays! Lay down the rules,lol