Christmas 2009

We had a lovely time visiting with friends and family. I was sad Christmas Eve because Tomas was running a low fever and it was freezing outside so Mike and I decided not to take Tomas to Mass. He took the girls, who were singing in choir that night and I stayed home with the baby. I was sad to miss out, but I watched Mass on EWTN and was able to catch the live broadcast from the Vatican for Midnight Mass. It was beautiful and the Pope's homily was perfect. God has been so good at lifting my face whenever I look down.

Mike and the girls drove home from Church in a sort-of blizzard. Howling wind, driving snow, but not much accumulation. It was crazy weather. The girls and I got geared up and went outside for their first snowball fight. We had a fantastic time.

Christmas was wonderful as always, and we have spent the last few days with family that has to go back to FL way too soon.

Wishing you all a Blessed, Merry Christmas!

He was trying so hard to get that wire into his mouth! I guess he fugures he's going to eat orally one way or another!

I met with the surgeon yesterday and he wants to go ahead and do everything all at the same time.
He did say it was ok to wait until after our vacation as long as Tomas did not become symptomatic on the J-feeds.  So in late Feb/ early March Tomas will have:

Gall Bladder removed
Nissen redo
Morgagni (liver) hernia repair
Para-esophogeal hernia repair
Bowel adhesions repair

I'm glad we have so much time to prepair. It will take me that long to get to my happy place. As I was leaving the surgeon's office he casually said "I can tell you this, I'll be stressed out the day before his surgery." It is a good thing I really like him and I know he was trying to let me know he cares, but wow, that has to be among the top 3 things never to say to a baby's mama before an operation.

Tomas has a gallstone!!! His GI called this morning with the renal scan results. Kidney's are fine, but a stone is in the gall bladder. Since Tomas has had so many painful feeds he recommends talking to the surgeon and scheduling the surgery soon. What little research I've done shows that the regular procedure is gall bladder removal. I have no idea if that is the case with babies as most articles on-line are about adults. The appt. with the surgeon is on Tues. afternoon. One person I told this too said it is just another kick in the you know what, but this is Advent. This season is for learning about patience, about having to wait for the fulfillment of the promise. This is when we rejoice, for greater things are yet to come. So I will take a deep breath, re-adjust the yoke the Lord has placed on me and trod onward, with my beautiful, beautiful baby boy lighting the way.

My sister sent a package, they loved their presents but the box was the biggest hit.

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,
Dorothy

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.