Sunday, November 22, 2009

Happy Thanksgiving

Tomas' labs are back to normal! His WBCs are all in normal range (well one is just slightly below normal - but 'll take it), and his platelets have climbed for the first time since June. He made it through without any illness, praise God. Victoria is battling a sore throat though so we'll see...

The motorcycle show from a few weeks ago was a huge success and we now have a 50cc honda in the garage to prove it. The girls are learning fast and I ordered their helmets and jerseys yesterday. It is really neat to watch how their different personalities play out on the dirtbike. Olivia thinks through everything and steadily progresses. She is now allowed to ride in second gear, and working on going faster and learning how to stand on the bike. Victoria rushes headlong into stuff, jumped on the bike and took off. But she is still scared to move out of first gear and is scared the noise from higher gears will be too loud (she is petrified of loud noises). They both love it though, and beg Mike to take them out every day. Eventually, we'll get Olivia a bike her size (she's learning on Victoria's little one right now) and of course Mike needs a dirtbike too, because none of the 3 bikes he has already can go off road! I'm glad they have something they can do together and that they all love. One day Tomas will fall into that crowd no doubt, but for now he is my snuggle bear.

He has an enterococcus infection (fecal based) from when the Drs. had to replace his j-tube and not use a sterile new one. It would have been nice to get a new one but that meant extra days in the hospital. It would have been nicer had they just not taken it out in the first place, but that was not to be. So a course of anitbiotics and some topical and all should be well.

I hope everyone has a wonderful Thanksgiving.

Friday, November 13, 2009

House Arrest (again)

Ugghh, Tomas' WBC is approaching severly low so we are (well at least he, and by default me) under house arrest.  We do get some grand days out involving car arrest when I am dropping off my older two for something. Then they have to disinfect and such before they get to get in the car for the trip home. Victoria is having an allergy/asthma flair up now and is supposed to be wearing a mask within 6 feet of the baby. Problem is I haven't been able to go to the store and get any.  Mike came home last night so he'll go tonight or tomorrow to get some, and also the hand sanitizer that has the moisturizers in it. The other ones dry up my hands horribly.

Yesterday I took everyone to the lab to have Tomas' retested since it's been a week since the low ones came in. It wasn't crowded but there was one lady sniffling into a tissue. I swear I've become like the germ gestapo. I parked us in the farthest corner from her I could. Poor thing must have felt like she had leprosy. Then I had to sign in and realized I used the pen that everyone else used to sign in with. Of course, I travel with hand sanitizer in my diaper bag, the car, the stroller, etc.. So I hope I was covered.

After the lab, Tomas had 2 appt's, and we had about 2 hours to kill in between them (they are about 40 minutes away from home, but only 5 minutes from each other) and I had to get everyone lunch. I thought since it was a weekday afternoon the food court at the mall would be ok. I had Tomas in the stroller with the cover on it and the girls each got to have their favorite foods. Usually, when we do drive through someone is always crying because she doesn't like the chioce the other girl made. Anyway, it was very empty and all was great until I turned around from paying for Victoria's cheeseburger and there were suddenly like 20 people in line there with us. I don't know where they came from. We just found an isolated table and ate. Then we all have to scrub up again before we can touch Mr. don'tgetyourgermsonme. I'm anxiously awaiting the results of the lab to see if we can resume normally scheduled activities!

Tomas saw ENT and GI yesterday. ENT wants a baseline pH probe before any attempts at gastric feeds, GI wants to wait for the probe until after the first attempt. It will be interesting to see how that plays out. I am so nervouse about trying to do a bolus into his stomach. I do not WANT him to have to stay on continuous J feeds but he is SAFE on continuous J feeds. GI thinks he's ready for a bolus, and doesn't think he'll try to vomit it up. Tomas has lost weight, as planned (weird, huh? - read back around mid-September if you need a refresher) and the GI doctors theory is that now that his body doesn't have an overabundance of calories, his stomach will work just fine. I am scared to death. The pulmonoligist called to check on him last night and said not to try anything over the weekend, just in case. As if!

The girls are going to a movie night at another friends house and then Mike is taking them to a motorcycle show of Sunday after church, so I guess it will be a quiet weekend for me.

God bless,

Saturday, November 7, 2009

Quick update:
Tomas is doing AWESOME. It is like nothing ever happened. He is happy, giggling, playful, and not tender at all. Simply amazing.
Thank you for all your prayers.

Friday, November 6, 2009

In for one surgery out with two AND pulse oximeter part 3



The incisional hernia repair went very well. It was the hernia by his belly button. It was caused by the last repair of the umbilical hernia. Tomas came out of the anesthesia beautifully and did not even need oxygen.
However (anyone out there surprised there is a however?), when the dotor came out to talk with us he said the only problem was that the assisting nurse took out his GJ tube thinking it was a G tube. Apparently this doctor likes to remove the G-tube buttons while he operates and then puts them back when he is done. Well, during prep the nurse deflated the ballon that keeps the button in place and began pulling it out, only to realize that it is not the short G tube, but the long GJ that needs to be precisely placed in the radiology dept.
So, while we were in recovery with Tomas, radiology calls to say they have an opening at 3pm and he can go to get the tube placed, but that means going back under general anesthesia only 4 hours after he woke up from the first one, and they don't work with a pediatric anesthesiologist, just an adult one. I was about to throw a fit when Tomas' recovery room nurse (different from the Operating Room nurse) does it for me. She practically screams into the phone that he ABSOLUTLY has to have a pediatric anesthesiologist and she is not sending him anywhere until they get one. So the scramble began.
Meanwhile, a tech from the radiology dept. comes to Recovery to collect Tomas' tube to make sure they have the same one to put in. He said they don't usually do this kind he'll probably have to order it. Well, the last hospital took over a week to get one. It wasn't as urgent then but remember we have no other way to feed him. So now the talk turns to how many days we'll have to stay, because he'll need to be on IV fluids and if it takes too long they'll switch to TPN feeds until the tube arrives. Scramble number 2 begins, this time to try and get the new tube ASAP.
Around 2pm Tomas got sent up to his room and we were still waiting to hear what was going on with finding a Dr. and a tube. At 3pm some transport people came to take him to radiology. I freaked. It turned out, that his anesthesiologist from that morning was still at the hospital and available to do the procedure, and that the GI doc had said it was ok just to re-place Tomas' tube and not wait for a new one. It would have been nice for someone to tell us. What if I had gone to get a cup of coffee or something to come back and find him gone!
Anyway, Tomas came out of anesthesia fine for the second time in 5 hours and had an uneventful night. I made sure they kept on top of his pain meds so there would be no tearing open like last time.. This morning cardiology rounded on him, but doesn't think his bradycardia's are anything to worry about (more on that another time - this post is already going to be long). Oncology came next. His RBC count is still normal, but his platelets have dropped considerably in the last 2 months (although still just above the normal range). Also he has moderate/close to severe nuetropenia (low infection fighting WBC).  There is an injection if it gets severe enough, but it can trigger the luekemia cells so the Dr. says he only does it if is absolutely necessary.

He has a follow up with surgery next week and oncolgy in 3 weeks.
 Now for the oximeter saga continuation. The home health company called me on Wednesday saying the machine that they picked up on Monday was only able to record 2 hours worth of data because Tomas moved too much. Really, you think a nine month old might move a lot? So they are going to order a special machine that will record even with movements and bring it out next week. So much for getting the data recorded before the surgery.

I am most grateful for all your prayers, and kindnesses. When I stop to think of the prayers that were said for him yesterday I am so overwhelmed. Thank you, thank you, thank you.

Monday, November 2, 2009

I realized (thanks to a friend) that I never posted when Tomas' sugery is. It will be on Thursday, he'll be staying overnight for a 23 hour obs. My husband (glass half empty) thinks we'll have a hard time getting out of there with all his desats but I'm (glass half full) hopeful that since we have O2 at home they'll let him go.

I had Olivia in for her pulmonogy follow up this morning. She is allergic to dust and mold and cats. Cats are a moderate allergy but we don't have any (and my husband says now we have the perfect excuse to never own one - not a cat person). Dust and mold are mild allergies - and it is a good thing, not too much mold around here but dust bunnies galore. Can you imagine the pressure if it was a significant allergy? I can just picture myself debating whether to dust or just give her more meds!

Last night Tomas' monitor went off and it was his heartrate not oxygen. Last week the same thing happened and his heartrate showed 34bpm. I thought it was fake because it was so low, and he really doesn't have any heart issues. But with last night's occurence I mentioned it to the Dr. this morning and she said it could be due to the reflux. If I hear one more time that is what is wrong with my son is because of reflux, I may scream. Really loud.

His surgery is on Thursday and I'm ready. There is a small room off of the main church my family goes to and there is a statue of the Pieta. I went in and knelt to say the rosary. My mind was all over the place, absolutly blank. It was definitely a time that I was most grateful for repetative prayer, I was able to make it through even though I could hardly focus. Afterwards, Mass began. The Gospel was Mt 5:1-12:

When Jesus saw the crowds, he went up the mountain,

and after he had sat down, his disciples came to him.
He began to teach them, saying:

“Blessed are the poor in spirit,
for theirs is the Kingdom of heaven.
Blessed are they who mourn,
for they will be comforted.
Blessed are the meek,
for they will inherit the land.
Blessed are they who hunger and thirst for righteousness,
for they will be satisfied.
Blessed are the merciful,
for they will be shown mercy.
Blessed are the clean of heart,
for they will see God.
Blessed are the peacemakers,
for they will be called children of God.
Blessed are they who are persecuted for the sake of righteousness,
for theirs is the Kingdom of heaven.
Blessed are you when they insult you and persecute you
and utter every kind of evil against you falsely because of me.
Rejoice and be glad,
for your reward will be great in heaven.”

The homily was all about how God doesn't call the equiped but equips the called. And how during life's trials we must unite our suffering to the cross and remember to "Be still, and know that I am God". That Psalm has been my meditation point from the day we got the results of the quad screen. To have it handed to me on a silver platter just minutes after praying before Our Lady was a beautiful reminder of how close God is holding my family right now. I do rejoice and I am glad, and I pray only this; to remember from whom all good things come, and to whom all good things return, and to give thanks for whatever time He allows me to serve that purpose.

Sunday, November 1, 2009

Why Don't babies understand Daylight Savings time?

Tomas woke up at his usual 6am and I unhooked all his stuff, changed his diaper, and scuffled out to the kitchen for my coffee and realized it was really only 5am!!!! Ugghh.

The 24 hour recordable pulse ox session (saga) is over and the home health company comes for it tomorrow. I found myself in the weird position of praying for a deep desat. It didn't happen, unless I missed it. The lowest he went was 79. I was really hoping for one of those 60s.

Halloween was so much fun. We started out at a friend's house and had 15 kids with us. We were joking that we could wipe out a house's candy supply with just one stop. Later on I took the girls home so they could go around our neighborhood with Mike (he had to work earlier), but it got so cold they were only out about 1/2 hour. Tomas always loves being outside so he had a great time watching all the goings on. He did not recognize Olivia though - Victoria yes. It was funny.