Monday, December 28, 2009

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!

Wednesday, December 23, 2009

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.

Friday, December 18, 2009

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.

Thursday, December 17, 2009

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

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,

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.

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.

Friday, October 30, 2009

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.

Thursday, October 29, 2009

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...

Tuesday, October 27, 2009

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.

Monday, October 26, 2009

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.

Friday, October 23, 2009

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.

Wednesday, October 21, 2009

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.

Monday, October 12, 2009

Mike and I got some wonderful news the other day. All of Tomas' holes in his heart have closed. He is not even considered a cardiac patient anymore and only has to go back in 1 year for a follow up. I am so happy I can't describe it. His cardiac issues were never his biggest problem but they always exacerbated the other ones because many doctors were afraid to use certain drugs, or classified him as high risk . Now he can be considered normal for treatments. Plus that is 1 doctor off the list of the ones he was seeing regularly.
He has had some great social growth in the last few weeks and has now figured out that if someone else is holding him and he can see me than surely I can't be the one holding him, and he cries. I like to call it the "not the momma" syndrome. The big deal about that is it is average for his age - meaning he is on target for at least one of his mental milestones. He has also figured out that if he can't see you, you are still there. He lifts his head out of his car seat to look over at Victoria, puts his head back and waits a few seconds, and then does it all again. Very cute. He has started vocalizing a lot more and now will call out for attention, especially if the girls are nearby. I can't imagine why, but he seems to love the chaos they bring with them.
I also followed up with the new GI doctor and we went over the plan again to get Tomas on oral feeds. First step was to reduce his calorie intake back to the normal concentration on his formula. I did that last month, and his weight remained the same for that month (no surprise). He is 9 months old and weighs 15lbs. Next up is to retry him on regular infant formula (milk protein based) instead of the Nutramegin. I'll be trying that next week to see if he can process the proteins without fussiness. All the while his calorie intake should be small enough to make him burn through a lot of his body fat so he can get hungry. When he is ready I'll take him off his continuous feed for several hours, allowing him to get really hungry, then give him a small amount of formula by tube into his stomach. The idea is that he should be so hungry his stomach will process the food quickly and not try to retch or gag or reflux it up.
If we can retrain his stomach then the battle is won. It then becomes a matter of teaching him how to eat. He is very interested in food but does not know how to move it through his mouth properly. It is just like when you first spoon feed a younger baby. It will take patience for sure. Also, if his stomach stops trying to send stuff back up and allows food to move through without the retching his future surgery should go much better.
Speaking of the surgery, Mike and I found out Tomas has another hernia, this one in his intestinal tract below his left lung. That makes 4 hernias for my little guy. It can be repaired with the others, but that surgery is turning out to be huge and I am placing bets now that the docs will tell me they aren't going to be able to do it all at once. I meet with the new surgeon (insurance issue) next month.

When I had him at his new Endocrinologist last week, the doctor said something that really got me thinking. He said the ironic thing about these kids is they typically have major heart issues but are also the kids with the biggest hearts, and that they are sent here for us. I think that is a lot of pressure for one little guy. If he should grow up to be moody and tempermental like the rest of us he is somehow not fulfilling his purpose?

Thursday, September 24, 2009

It is the end of another appointment filled week.

On Monday Tomas was checked by his pulmonologist and she said he is doing much better and to keep him on the new meds she tried. They are drying up his lungs ,and I can hear an improvement, so can Victoria which I'll get to in a few lines. Olivia has also started with the same pulmonologist for her asthma. After last months attack she really needs to be followed for awhile. The doctor gave her some new meds to use and a new action plan, so I am looking forward to a winter without pneumonia for her.

Tuesday, the girls and myself had our first "family" dentist appt. The girls went first and did great, then kept an eye on Tomas (in the stroller) while it was my turn. I sat in the chair, they reclined it - and I thought oh no I'm gonna fall asleep. The tech had to take a bunch of x-rays though so that kept me awake, right up until she said she was finished and going to go get the dentist. Sure enough, I awake to the dentist gently smiling over me!!!! This is how amazing God is though, as Tomas' story came out, the receptionist told me she has a 5 year old with severe and irrevocable seizures and he is at risk for sudden death. She then gave me the number of a home health ministry that will send someone out at night to watch the monitors so I can sleep.

Wednesday was the appt. with the new GI doctor. He has some new ideas to try and would basically like to train Tomas' stomach to allow food in it without retching, gagging, etc... He would do this by letting Tomas get hungry and only giving him small amounts of food at a time. The doctor told me he would most likely lose weight but that he has had a lot of success with this process. We really have nothing to lose so we'll give it a try. If it doesn't work, we'll move back to the way he eats now and he'll eventually gain the weight back. He also said that if it works than the future surgery to repair all the hernias would have a better chance of taking since there would be no stomach contractions to tear things open again.

Wednesday was also the day the girls have their Little Flowers meeting and choir practice. While driving from one to the other, Victoria calmly says, "Mom, I have some REALLY bad news." I'm thinking maybe she spilled some water, forgot something at the house, had an accident, or something along those lines. But no. It's "Mom, I have some REALLY bad news.......Tomas isn't breathing."

I wish I knew how to type the sound of brakes screeching along the pavement. Fortunately, there was a place for me to pull over, and I ran around to the backseat. He was fine, sound asleep and breathing so QUIET that she thought he had stopped. Remember I told you his new meds were working! I then had a discussion with Victoria about how she did exactly the right thing because she is the one sitting next to him, and he did sound different from how he normally does, but that next time she needs to spit it out a little faster. My friend said she was just trying to soften the blow, but there is some news that you just can't make sound better. At choir practice poor Victoria didn't know the words to the new songs and could not read fast enough to keep up on the sheet music so she sat in her chair and swung her legs, watched the ceiling, watched the floor, looked behind her, etc... After practice the choir director asked me if there was something "special" she needed to know about Victoria. Luckily, I found this funny.

Thursday was a trip to Dallas for Tomas' oncology visit. His labs looked great and I finally caught a break with the whole insurance issue. His doctor said that pediatric oncologists were such a specialty that usually they had no trouble continuing care with existing patients, and that she would discuss it with the finance dept and get back to me. She also cleared him to only need check ups every other month instead of every month. Awesome!

Today, was a visit to my doctor that I have been trying to see for the last 3 months. Then in the afternoon I took the girls to the park because it is beautiful here. We ended the afternoon with a quick run to the pediatrician for a rash that Tomas has had for about a month. She didn't think it was anything major - just some hard skin bumps that might or might not go away. There are not a lot of them and I was relieved it wasn't anything to worry about.

Tomorrow I am going to tackle the ROOM full of laundry, really, it is amazing we have any clothes left. The girls have a movie date at a friends house at night, Sunday is for the Lord and than next week I will try my best to get caught up on school. NO DOCTORS APPOINTMENTS!!!

Have a blessed weekend everyone,


Saturday, September 19, 2009

Tomas's GJ tube is working nicely. He had some stomach pain during the first 2 days, I think from just clearing out anything that was left from before the tube was placed. After that he was great and very happy.

Then came Wednesday.
He had a barium swallow study. The speech pathologist mixes different consistencies of formula and I give it to him in a bottle. He aspirated right away on the regular formula, pooled the liquid at the back of his throat (which greatly increases probability of aspiration) for the formula the consistency of nectar. However, he did wonderful with the stuff that was as thick as honey. He had about 30 swallows and never aspirated. He also had some cereal and did fine with that. This is great news and he has been cleared by speech to start with oral feeds no thinner than honey consistency. You'd think I'd have been dancing for joy in the radiology dep't. BUT when they turned off the cameras and I was left with him he began coughing and sputtering due to his reflux, and he was fussy baby for the next 12 hours because he had food in his stomach and was uncomfortable. Also, because he had aspirated early on in the study he had a very hard time stabilizing his O2 so he ended up on oxygen support for the rest of the day until he was able to clear out his lungs.
His pulmonologist and the speech therapist who comes to the house are going to have a conference call on Tuesday to plan out a course for him, but I also want to run everything by GI before we start anything because here is the big question: Is his discomfort from having food in his stomach worth the trouble in order to teach him how to eat, or is it a signal of a larger problem that should preclude him from eating altogether? I haven't got a satisfactory answer from the GI doctor. He definitely leans toward the DO NOT FEED approach and that's why he put in the GJ. I know it has something to do with the hernias and the reflux but I am not seeing the big picture. Oh, and throw into the mix the news that he has Bile Reflux as well (gall bladder normally dumps bile into the intestines right where the stomach joins, but his is refluxing back up into the stomach - joy) and I am totally lost as to what to do next. I pray that his new GI (appt. on Wed.) can map out a road for me, or at the very least clear up all the confusion I have now.

Yesterday I took Tomas in for his sweat test to rule out Cystic Fibrosis. While I was in admissions filling out paper work, I hear him working on his diaper. Wonderful, I know it is going to be a few minutes before I get to him. Finally, I get upstairs to the lab and take him into the bathroom, lift up his blanket and it is EVERYWHERE!!! All over his WHITE shoes, his clothes, his stroller, just everywhere. It is one of those moments when you just don't know where to begin. About halfway through I ran out of wipes and had to switch to paper towels. Just a disaster. Change of clothes got left in the back of the car, not the diaper bag. so trailer baby (diaper and t-shirt) went to the lab. Then when I went to lift him up for his test I caught his tube on the stroller. He was crying, I felt miserable. That took about 20 minutes before he felt better. I still feel like (blank). The test was some electrodes strapped to his leg that give the sensation of your leg being asleep. He had to keep it on for 5 minutes. He was so good, playing and laughing with the nurse. After that, she wrapped his leg with gauze and plastic to collect sweat and we had a 1/2 hour to kill. Later, the nurse collected the gauze and weighed it, and there wasn't enough sweat. I asked her if we just repeat it and she said no, that the doctor has to re-order. So the whole morning was for nothing. So frustrating.

As for the rest of us, Olivia and Victoria have started Little Flowers (kind of like a Catholic girl scouts - sort of, but enough to give you an idea), and have joined the children's choir at church. The sun has come out finally after 8 days of overcast/rain.

The upcoming week has a pulmonology appt., speech therapy, oncology, and an appt. with the new GI. Somehow we fit school in here and there and life rolls along. I could really use a laundry fairy though.

God bless,

Thursday, September 10, 2009

Hmm... Where to begin...

After last week's day at the ER and meeting with Drs. we were in holding until the tube could be placed. Tomas was on reduced feeds and doing fairly well while waiting.

This past Tuesday, Tomas woke up from his late afternoon nap not looking "quite right". I put him on the oxygen monitor and he was desatting a lot so I ended up putting him on O2 support for the rest of the day and then at night as per usual. By the Next morning he looked a lot better.

Wednesdays are my family's outing day for homeschool and since we spent last Wednesday at the ER I was particularly anxious to have a nice day this week out with Olivia and Victoria. Since Tomas had perked up we went as planned to a local nature museum and butterfly house. It was such a lovely day and I really enjoyed doing something nice with the girls (Tomas slept through most of it) (God thing!).

As I was packing up the stroller my phone rang and it was the pulmonologist wanting to know how Tomas was doing. Strange, but I told her about the previous day's events and that he was looking pretty normal at the moment. She then told me that his culture from his suctioning from 2 weeks ago had grown a psuedemona bacteria. This bacteria is usually picked up in the hospital or is associated with Cystic Fibrosis. It can be treated with antibiotics but it is difficult to get rid of and can affect any part of the body. Because of that and the difficulty breathing Tomas had experienced she felt it was urgent that he get a chest x-ray ASAP. So we finished up our Wed. at the local imaging center. It went pretty quick and we were home around 3 hours after the doctor called.

When I left the imaging center the tech gave me Tomas' films and report. The report said all was well. signs of chronic airway disease but nothing acute. I looked at the films and his left lung was still significantly smaller than the right. Now I know this is due to the atelectisis but am wondering why nothing is said about it on the report. So my inner self starts arguing with my outer self. "Drop off the films at the Drs. office".

"No, I'm tired, and everyone wants to go home."

"Go do it, it's only about 10 mins. from here."

"Yes, but then I'll be driving with traffic to get home, it will take twice as long."

"Just do it!"

"All right, fine."

These are actual conversations I have with my brain. However, knowing who rules over that inner voice makes it almost impossible for my outer self to ever win. So I dropped off the films and spent an extra 20 minutes in traffic.

At 7:30 last night my phone rings and it is the pulmonologist again.

"Mrs. Hernandez, did you drop the films by the front office?"


"Oh, thank you so much, I was faxed the report but now that I am looking at the films something doesn't match up."

me: to inner self "Oh, stop gloating."

What it boiled down to is that the Dr. thinks Tomas has Pneumonia but wants to compare Wed.'s x-ray to one taken last month at a different hospital. She asked me to drive out to the other hospital today and drop the films by her office so she can compare the 2.

So this morning as we're preparing to load up my phone rings again. This time it is the GI office telling me that the G-J tube has arrived and could I please come tomorrow to have it placed. It is the same place I have to go to today to get the x-ray, about a 45 minute drive. I beg to be put on the schedule and she finds that the 2 o'clock cancelled (God thing!). Now I have to pick up the films, have a GI appt. and then get the tube placed in the radiology dept. at the hospital. So I call a dear new friend to see if she can watch the girls. She can (God thing!), and we're off.

Poor Tomas got his stoma (hole into stomach) dilated to fit the bigger port with no topical or anything. It was a very straightforward procedure, but still not pleasant. Then when we waited in radiology the tech used lidocaine to numb him for the new tube placement but he still wasn't happy. The whole procedure went very well though and now his stomach is out of the picture. It should help his breathing (no more reflux), and his tummy troubles.

I dropped off the x-rays at the Drs. office this evening, and she wants to see him in the morning.

So far so good with the new tube.

Oh, and I almost forgot, last week as we're leaving the GI's office the secretary tells me that Children's physician group of UT (univ. of TX) is dropping my insurance at the end of the month. It is a good thing only 8 out of 10 o Tomas' specialists are with that group!!!!!!!!

I probably needed oxygen support when she told me, but I have since recovered and am slowly finding new docs, 2 down 6 to go. This too is a God thing but I don't want to admit it. I just keep fighting with that inner voice. I guess as long as I don't do it out loud I'll be all right.

Love to all of you,


Tuesday, September 8, 2009

I am still waiting for an appt. from radiology to place the GJ tube. I called today and they said it was being ordered and hoped to be able to do the procedure later in the week. He also has a barium swallow study coming up to see if he is still aspirating. It is a bit ironic though because even if he was able to swallow properly we still couldn't feed him because now the reflux is back. The test is to see if we can continue his oral therapy and so the pulminologist knows what is going on with his saliva and airway and lungs

Wednesday, September 2, 2009

I wanted to update everyone with what is going on with Tomas. When he was 7 weeks old he had surgery to prevent severe reflux that was causing him to suffocate. We have known for a few months now that it was not holding 100% of the time because he was spitting up occasionally. That is not supposed to happen - food can only go down not up-after the surgery. However, it was VERY intermittent and the doctors wanted him to get bigger and stronger before attempting another surgery to repair the first procesure and and fix the 3 hernias he has.Unfortunatley, on Thursday morning he had one of his more dangerous suffocation episodes and then last night a much milder one. Now that the frequency of these episodes is increasing we have to do something about it. The girls and I spent all day at ER having Tomas evaluated and tested. Tomorrow I meet with his GI doctor. At this point we have 2 options, either the surgery (which by all accounts is a HUGE deal) or finding an alternate means of feeding him. His doctor has said in the past that our last option before surgery is to move his feeding tube from his stomach directly to his upper intestinal tract. I am fairly certain that is what will happen tomorrow.Hopefully, tomorrow's procedure will buy us some time. Thank you all for praying for us. It means so very much, especially when things get tough.

Wednesday, August 26, 2009

We are supposed to start school on Mon., but Olivia is quite sick right now and most likely has pneumonia. She gets it every time she gets a cold. I'll probably take her in tomorrow if she doesn't miraculously recover overnight. Victoria is coughing but usually ends up with a sinus infection, not a respiratory one. I am doing my best to keep the girls upstairs and Tomas as far away as possible. Unfortunately, it is almost impossible to keep the germs away. Even just taking Olivia to the doctors means putting all three of them into the car next to each other. Plus by the time I know they're sick they've been all over him for days.

He had a dying spell this morning. I HATE that term and I HATE the episodes. He stops breathing because he is refluxing/choking. He goes all limp in my arms and I just have to wait and pray. It only lasted about 15 seconds but that is a VERY VERY long time when you are waiting for your child to breathe. Also, it is just not supposed to happen at all anymore since his second surgery. That means his nissen is not working 100% of the time, and probably means he's looking at a 3rd surgery on the sooner rather than later side.

He just saw his pulmonologist on Mon., and we got mixed news. He doesn't need a CPAP while he's sleeping, but does need to be on the oxygen for at least a year and I have to be good about traveling with it so he can have it for naps. The doctor also wants Tomas to get Synagis (RSV vaccine) throughout the winter, the whole family to get flu shots (we always do) and for Mike to get the H1N1 vaccine. I'd really like to see the H1N1 be out awhile before sending anyone in the family in to get it - just makes me nervous being rushed like that and so new.

We are all just bumming around today. The girls are in cartoon heaven upstairs (which looks like a mini tornado ripped through!). Tomas is using those ultra-flexible legs to kick everything in sight. He actually aims them just like his hands. It is pretty funny. He likes to aim for my esophogus when I'm leaning over him to suction him out. He'll actually re-attempt if he misses that "soft spot" on mommy's neck. Stinker.

Saturday, August 22, 2009

Look what I can do!

This is such a big accomplishment for him. First, that he is even able to tolerate being on his belly and second, that he can hold his head up that high. Of course, Olivia and Victoria are his biggest cheerleaders.
We went to a playgroup yesterday with local families who have a baby/child with Down Syndrome. There were four other families and one who couldn't make it. All the Down's kids were boys! They ranged from 15 months to 4 years. It should be a great group for Tomas as he gets older. As it was he stayed awake the entire time just watching all the activity. The other nice thing about it is two of the families have older girls around the ages of my girls. I am very happy that they get the chance to have friends who TOTALLY understand what is is like to have siblings who need so much special care.
As usual having a mommy network is invaluable. None of the other kids had quite as many medical issues as Tomas (remember he's a 5%-er), but they did have a lot of the same stuff - just spread around between the kids. It was great to get to talk and hear their stories. I had read way back when this all started the 80% of Down's babies are born to moms in their 20's. It didn't quite make sense then as your risk goes up after 35, but yesterday it all became crystal clear. The moms were all young (except one other mom) and non of them knew pre-natally that they were carrying a Down's baby. It all snapped into place. Women over 35 get all the high risk ultrasounds and so usually know ahead of time. Younger moms don't. You can follow the rest of the thought process pretty easily as to why only 20% of Down's kids are born to women over 30. So sad.
Next week should be interesting. I take him to the pulminologist on Monday to get the results of the sleep study. Also, on Friday the nutritionist comes out to weigh Tomas against his baseline from two weeks ago. I'll let you all know what happens.

Tuesday, August 18, 2009

My irritation level is running high these days. I am finding just about every facet of Tomas' health care is bothering me.

His GI doctor is one of the best in Dallas but hasn't reached out for other opinions to find out what is causing the swelling around the g-button. Tomas is still retching when the swelling goes down and would throw up if he could. As it is he just starts to suffocate from all the choking and retching and I have to empty his stomach so he can breath again. It is reminiscent of the time before his nissen surgery although with much less frequency. The thought of switching doctors and moving records and especially re-testing Tomas is what is making me wait through one more round of appointments before I do anything. Irritated.

His sleep study was done on the 12th but I don't have the results yet. The PEDIATRIC sleep institute didn't have infant cannulas They only had pediatric sizes. Could they not see they had an infant scheduled? I mean really what would it cost to buy a box of infant cannulas and leave them in the closet for when you need them, and why bill yourselves as able to serve infants? Even worse,I'm afraid it will need to be repeated because he hardly slept at all (his stomach was bothering him)and did not fall into a deep sleep until around 3:30 in the morning. I'm not sure the doctors got enough information. Irritated.

Tomas' oncology checkup was last week. His hemoglobin levels have dropped but are still in normal range so he just needs a follow up in a month. However, he as some white spots that are popping up on his body. I showed them to the doctor (not his regular doc - she was stuck at hosp.) and she said they were nothing to worry about. When I got home I read his checkout summary and the visit was coded as "Low Grade Myelodisplastic lesions". What? Irritated.
His pulmonary issues are the same. I do not hear any improvement with his breathing. Most likely it is because I can not manage to fit in 4 breathing treatment a day. Sometimes I get 2, sometimes I get 3, but rarely 4. I just run out of time. I am trying to improve my schedule and make it a priority, but between physical exercises 3 times a day, oral exercises 3 times a day, suctioning at least once a day, breathing treatments, chest patting, oxygen set up when he naps, making sure the feed bag doesn't run dry and all the tubing stays in place, medication, and regular household stuff, something always gets forgotten. Irritated (at myself).

Now, since this is the crankiest post I've ever written I would not want you all to think I am sitting on my front porch surreptitiously shooting bb's at all the skinny joggers going by or anything else like it. I am grateful to God for every moment of every day, thankful for the good ones and offering up the bad ones. He has graced me with the gifts of calm, peace, and hope. They have never left me, not even when all the darkness the world can conjure up tries to suck me dry. He is always there, if not immediately present in my mind, then quietly calling me to walk away from the troubles of the day and find rest in Him. I know I am blessed, and I know I am unworthy. Therein lies the paradox of humanity. C.S. Lewis calls it the "unbearable compliment".

God bless you all,