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.

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,
Dorothy

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.
Dorothy

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

BEFORE

AFTER

GOING HOME

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.

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.

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.

Oximeter story: Part 2

Ok,  the driver came this morning. It was a different driver than yesterday but one who had been out here many times and is very aware of Tomas' life. He looked at his finger and said, "It's not going to work." They sent a new unit but with another fingertip sensor. This one is softer and would make a great teathing toy I'm sure, but still too huge. He said that was all they had and the office had called the doctor and she said we just needed to find a way. I am doubtful of that because his doctor is an amazing woman, but that is another story. Anyway, I go and get my medical tape, which is the duct tape of this house and can perform mini miracles on it's own. I do my best taping job and it lasts on his finger about 2 seconds. It is just too big. His finger isn't even long enough to hit the sensor tip.

As the driver was getting ready to pack up everything and go I notice the input jack on the sensor is the same as his oximeter now. I just unplugged his toe sensor from his current unit and plug it into the recordable unit. It works!!! Hooray, moms rock, yadda, yadda. Diver leaves, about an hour later the batteries in the unit die. No charging plug. Luckily I had AAs so I just reloaded, but I am seriously considering putting the dead batteries back in it before they come for the unit on Mon.

It also only flashes an alarm, no sound. So I am sitting cribside for his naps, and not sure how to work tonight. Maybe get another sensor and wrap his other foot and plug that into the old dinosaur unit.

So, if I hadn't had a really great day with the girls I would be so ticked right now. Tomas' pulmonoligist order a 24 hr recordable pulse ox LAST THURSDAY to try and figure out what's causing his really deep desats. I called on his home health company Tuesday asking where it was, they said it would come on Wed. I told them that I had to leave the house at 2 that day and wouldn't be back until after 6. I get a cell phone call at 5:30 with the delivery guy outside my door. I told him I wasn't going to be there for another hour. They have to deliver it today instead. Ok, fine. The poor driver shows up and asks where the person is that it is for.  I say it's for the baby. He says - It's never going to fit. They sent a fingertip oximeter!!!! For a nine month old!To keep on for 24 hours! So now they are going to deliver the correct one tomorrow. Arrgh. The whole thing is we are trying to get this all done before the surgery next week. I don't know what is wrong with him, but his breathing is SLIGHTLY more labored than normal and he will only stay awake for 1-2 hours at a time. If it keeps up I'll have to take him in, but he acts completely normal (playful and happy) when he is awake, so I hate to have him poked and proded for nothing. Decisions, decisions...

2/3 of my heart giggling away in my bedroom, the other 1/3 was in the bathtub. Baby giggles have got to be the BEST sound known to humankind.

Tomas does have to have the surgery for his hernia. The doctor said it is not reducing (pushing back in), and that it is an acute issue but not an emergency. He wanted to do it this week, but I asked if he thought it could wait until next since Mike is out of town until Friday. And Halloween is on Sat. and I would be so sad if we couldn't do anything with the girls. He said it could, as long as it doesn't show any danger signs. I am well aware of what those are since he's had the hernia for so long. If anything should come up Mike will, of course, fly home. But since he's already planned it he may as well finish up this week and then be able to take a few days off next week.

After talking with the surgeon he suggested splitting up the repairs that need to be done. The others will be fixed later. Originally, we were going to repair everything (morgagni, hiatal, umbilical, any adhesions from previous surgeries, nissen re-do) all at the same time. But with the new finding from the ENT (reflux still going on) it is pointless to fix anything in his stomach because it could open up again if he starts retching.

If we want to try feeding him through his gastric port than we need to do it before the big surgery so if he does stomach crunch it won't tear anything open. Then, either it will work and he can tolerate gastric feeds and his stomach doesn't contract and the surgery will have a greater chance of sticking, or the feeds don't work and we go back to j-tube feeds and the surgery will still have a better chance of sticking because we aren't putting anything in his stomach. The key being we need to try before the surgery.

As for the upcoming surgery, I don't have a date yet, just next week. The Dr.'s office will call later with the date. It is supposed to be an outpatient surgery. They'll be keeping him for a 23 hour obs. and if all goes well he can go home. It will be at Medical City. The Dr. said the only unknown is how well he'll be able to get the bowel back in due to the previous surgeries.

I am praying like crazy for the courage to move forward. The last surgery was so traumatic. For those of you new to the blog, Tomas bled out and nearly died twice. The surgical team didn't want to go back in to fix him because it was too risky to lose that much more blood. So instead they kept repacking him all night long and eventually he did stop bleeding. Then he just laid there completely still for several hours until he finally gave out and began dropping his sats. His heart rate took a nosedive. Thank God the respiratory therapist was in the room at the time. She pulled the CODE cord and everyone came running. He was bagged and pulled through, only to have the same thing happen again about 1 hour later. He needed a blood transfusion by then. He was 6 weeks old.

I know with my mind that he is a much healthier baby than he was 7 months ago. My heart still aches and my body still trembles when I relive it though. He did have ear tubes placed in July, but they didn't have to cut into him to do that and I was only stressed because of the anesthesia issue. I need to let the past go and focus on this time. Easier said than done, but I have great friends, an amazing family, and an awesome God to help me.

Quick update:
I just saw his pulmonologist this morning. She is going to order a recordable pulse-ox to monitor and track his desats. She mentioned seizures as a possible explanation. Really at this point it is a very large unknown because his lungs sound so good. It could be his airway shutting for protection from the reflux. One encouraging thing she mentioned was that if it was from the reflux she would recommend surgery to fix the hernia's before putting in a trach. I guess that is better but either way for the reflux he's looking at another surgery. Just the thought makes my stomach hurt. I was really hoping to have some more time (and healing) from the last surgery (for me mind you!).

She is also going to conference with the ENT and GI to see how everyone wants to proceed. I guess right now everything will depend on what the pulse-ox records.

Tomas sees the new surgeon on Mon. morning to evaluate that stinking umbilical hernia. Darn thing has already been fixed once, opened back up, and is now trying to close and trap his bowel with it. If he recommends surgery then we will definitely look long and hard at what else can be done while he's under to make the most of it, since, as the doctor reminded me this morning, he is a high risk anesthesia patient. No kidding!

I have to take him for his flu booster this afternoon and I'll have the pediatrician take a look at the hernia just to make sure it can go through the weekend without trouble.

Mike is taking Olivia to a ghost walk in the historic downtown tomorrow night. Have fun! I hate being scared. He's been trying to get me to one of those things forever. So glad to pass that torch on to her. It can be their special thing. Yuck.

I really need to get a new lullaby CD for Tomas. I play it on repeat while he is napping and until the rest of the house is asleep at night so he can have some "white noise". It is not that it gets on my nerves or anything it is that the song "You are my Sunshine" is actually quite sad. Sometimes it can be very difficult to keep the fear of the future at bay and that song does definitely not help. Most times I don't even notice the scars, but there are times when I am playing with him and kissing his belly and the past just comes rushing in, and other times during the most ordinary tasks the word leukemia just explodes in my brain and it is all I can do to keep it together. He is desatting quite a bit when he is asleep and had two large desats while he was awake today so I'll see what pulmonology says tomorrow. Can you have apnea while you're awake?

I saw his new ENT today and got mixed news. His laryngomalacia is resolving and only considered mild, but during the scope the Dr. found significant swelling of the larynx, indicative of severe reflux. As you all well know Tomas is not supposed to be refluxing anymore. First, because of the nissen and second, when the nissen didn't hold we switched to the g-j. So, it looks like he may be refluxing his secretions. If this turns out to be the case and is severe enough it could mean a trach.

I am also closely monitoring his umbilical hernia because it looks like it is closing. That is great as long as it closes with all of his bowel on the inside of the abdominal wall. There is a small part that I can't push back in so I'll call the surgeon in the morning to see what he thinks.

He had his 9 month check up last week and the Dr. stressed me out by asking if he could pull up to a standing position yet. Umm, no. Then he asked if he was standing at all. Umm, nooo. Well how about sitting up? Ummm, nooo - 2 major surgeries, 1 minor, 3 procedures requiring general anesthesia, 2 intubations, 2 near coding bagging episodes. No he can't sit up yet. But Tomas' PT put me back at ease on Tues. and said he is making great progress (which I had also thought and was quite happy with until the Dr. visit!!!). Talk about a disconnect between patient and doctor.

Despite all the unresolved issues he really does look great these days. He finally got some teeth! the first one came on the 16th and the second 4 days later. That means my fingers take a beating during his oral exercises. They are so sharp when they first come in! I took the kids to a pumpkin patch the other day and he loved it. They all had a great time and he really enjoyed being outside. I'll ease up a little when he gets his RSV shot and try not to worry about germs so much.

It is funny how I notice so much more with him than I did with the girls. Do any of you remember when your baby was first able to reach up and pull a hat of of his head? I was actually cheering him on yesterday. I will regret that now that winter is coming, but it was so cool to watch him connect the thought process with his muscle control. It is the moments like that that make everything else ok. God is so good beyond anything I can comprehend. Really, think about it, that small tiny moments of pure joy in the middle of folding socks (no laundry fairy as of yet!)can erase so much pain. Not only that, but you go back for more, and are willing to take the bad to get to the good. Simply amazing. Simply God.