So far, so Great

Early morning hours brought uncontrolled pain and another dose of the anti-anxiety med mixed with painkillers and he has been out since around 8am. He should be getting moved to the floor sometime this afternoon and can start eating again as soon as they get a pump to the room. The doctor came in and wants to start on J feeds just for a week and then move to continuous G feeds for a month and then we should be cut loose! The Dr. said if he can, eat, poop, and breathe on his own, and his pain is under control he can go home TOMORROW! I'm trying to not get too excited, but wow, how awesome would that be!

Tomas is stable in ICU and sedated to keep him from moving. The surgery went very well, and the doctor was able to do it all laproscopically. He said it was very intense and he was as glad as we were that it was over. The nissen was completely undone, he said all he could see of the previous one were the sutures still hanging off the stomach. The para-esophageal was huge and took a long time to close. He had a hard time finding the morgagni but did and was able to close it and then the last thing was removing the gall bladder. His labs are a little off but nothing that can't be fixed with some meds. He came of the vent a little after surgery and is on O2 now. He needs to stay very still so there is still a chance he may have to go back on the vent, but for now the narcotics are working and not lowering his heart rate too much. He has an arterial line in one arm, an IV in each leg, the cannula, all the monitoring leads, and a catheter. He is a mess. There are 5 small incisions in various places across his chest to go with the 3 he already had. It is one of my more imaginative friend's job to come up with an awesome story about why his chest looks like he wrestled a gator.
Looking back over the last 24 hours, the drive in was so quiet and dark. The pre-op with all my concerns and questions. Then the letting go - the kiss goodbye - and the long wait - the update phone calls - and finally the surgeon comes out. What a relief. No recovery, just straight to PICU, seeing him for the first time, scanning every inch like when he was first born. Then the swelling starts and the pain starts and I am all for them drugging my baby. The breakthrough moans of pain meant specifically to break my heart. The swollen red eyelids from the tape during the surgery, and oh, this is definitely not for the faint or weak.
But we roll along here, just like we rolled along through every day before it, with reliance on God and the knowledge that He has foreseen all, and will carry us through whatever tomorrow brings.
As far as I know, tomorrow is bringing an x-ray and TPN. He has woken up every hour since midnight in pain and needed medication. It has taken me 2 hours to right this post! At this point the vent would be a relief, but I'm not sure what they are going to do. Earlier, they gave him an anti-anxiety med mixed with his pain meds and he zonked for about 5 hours. I don't know if they will do that again but I sure hope so.
I know this post is a bit rambly but it has been a really long day with just bits and pieces of sleep.
Thank you all for your prayers, as always they draw me closer to the Lord and help to comfort me during the long wait.
God bless,
Dorothy

The Great Reminder

The surgery is very close now, and the weight of the coming days can not be borne alone. I had Tomas anointed on Monday and he was also blessed with miraculous waters from Lourdes. There is a verse that keeps playing in my head,

1Corinthians 6:19 Do you not know that your body is a temple of the Holy Spirit within you, whom you have from God, and that you are not your own?

For so many days I could not figure out why this verse? I mean it is about immorality and keeping your body clean from sin. But it just kept rolling around in my head so I knew it was meant to show me something. Then this morning on the radio I heard today's Psalm; "Here I am Lord, I have come to do your will." It all clicked into place. Tomas is not mine, not really. I did not create him, Mike and I are only entrusted to care for him. And now in turn we must entrust the surgeons to care for him. This is the hard part, the really hard part. I want so much for it to be my will.

My will doesn't cause any pain. My will takes no chances, my will gives no power or control to anyone else.

For a few months now, we have been "cheating" and letting Tomas have a small amount of baby food by mouth when the family was eating dinner. In total less than 1/2 tsp on any given evening, just dunking the spoon in the jar a few times during our meal. Everything was going just fine and I was happy that he was still interested in eating.

Two nights ago, I put him to bed and my husband and I were talking in the kitchen and I was getting pretty emotional over the surgery. Over the monitor we heard Tomas start to fuss which quickly turned into a full blown screaming gallstone attack. Oh yeah, that is why he needs the surgery, so there is a chance he can eat normally, and there is a chance he can breathe normally.

Turning him lose tomorrow morning will take everything I have. No. More than that. It will take the entire communion of saints surrounding me and interceding for me and my son to be able to let him go.

Surgery is set for 7:30am and is 4 hours long, and will go to PICU afterwards. I will try to update as I can. Thank you all for praying for us.

The one week countdown

In 7 days Tomas goes in for his surgery. He is having a morgagni (liver) hernia repaired, hiatal (stomach) hernia repaired, nissen (using a piece of the stomach to wrap around and tighten the esophagus to prevent reflux) redone, gallbladder removed, and bowel hernias & adhesions repaired. It is a 4 hour operation with 2 surgeons, post-op to PICU and expected hospital stay of a week.
I keep prepping myself and was ready last month before it was cancelled. It is time to get ready again. This is the hard part. When we were taking Victoria through the halls to the OR we bumped into Tomas' surgeon. He told my husband he was losing hair just thinking about the surgery. I know he was trying to be compassionate and letting us know he takes it as seriously as we do, but it still pops into my head every now and then.
I have been praying for some down time before we have to head back into the trenches and yesterday my prayers were answered. Victoria perked up quite a bit and we headed out to the library and the girl's choir practice - she didn't sing but it was nice to see friends and just listen to the other kids. Today she is sliding backwards a bit but I hope every day brings a little more stamina for them both. I am hoping the mono is behind us as well.
I got a call from Tomas' pulm the other night and she asked how he was doing. That is never good. When the doc calls out of the blue to check on your kids you know something is up. She had run a culture a few days before when he was really congested and was calling with the results. He was (and is) still coughing and sounds congested, but all upper resp. stuff. She told me he is growing strep pneumonia and moraxcella, 2 of the 3 most common sinus infection/pnuemonia bacteria. So he started on antibiotics and we are praying like crazy his chest is clear for next week. It is also probably why Victoria had such a hard time recovering until she started on antibiotics herself.
My mother in law is arriving tomorrow and staying for 3 weeks and then Mike's Aunt will arrive for 2 more weeks, so I will have house and meals covered, hopefully for long after I will need them. They are life savers. Mike is taking a week off, and I am trying to gather some fun stuff for the girls to do when they come to visit at the hospital. Thankfully, flu season is over so they are allowed on the floors again (but not PICU - I will tag team with Mike and one of us will stay while the other goes to the family waiting with them).
Please pray for him, for us, for his medical team, the nurses and staff. In theory this could be his last surgery. Knowing that you all lift us up in prayer is a comfort I can not describe. It is my most fervent wish to one day be able to pay forward the goodness that has come into our lives since Tomas was born.

The trenches and musings on the sense of smell

It is now day 12 post op and I had to take Victoria to the ER yesterday. She was dehydrated and had ....umm...more intestinal issues. It wasn't pretty. It wasn't even close to pretty. She was hydrated and given an enema (took 5 people - and that was after they gave her Verset), and then spent the better part of 2 hours in the bathroom demanding that I rock her while she sat.
Today she is doing slightly better, her pedi's nurse called me 4 times today to check on her and in the end the Dr. put her on antibiotics because he thinks she may have a sinus infection. Last night at ER they were more worried about the tummy stuff than her uncontrolled pain. It was rather annoying by the end of the night. Tonight, after the morning dose of antibiotics, she is doing much better and actually ate something for the first time in 9 days. I want my intense little sprite back.
She and I got home around 12:30 last night and I slept with her in the downstairs guest bedroom while Mike stayed with Tomas in our room. Around 7am I hear grumbling coming from my bedroom and sludge my way over there to find a naked baby, clothes and blankets piled on the floor, and every wipe in the container used in a tumbling pile by the naked baby. He had a pooplosion and my lovely husband was trying his mightiest to clean it up. Sooo, that wasn't working and naked baby got a bath at 7:05 am. The 3 of us then scuffle to the kitchen to get our game faces on with my best friend - the coffee pot.
Our dogs sleep in the laundry room just off the kitchen and the second thing we do in the morning is let them outside, but they too had, umm...tummy trouble. My VERY lovely husband cleaned that up too.
I must add that God blessed me with a stuffy nose through all of this. That's right, I'm sick and very, very glad that last night and this morning I couldn't smell a thing! How's that for His ways are not our ways!

Correction

My son is only 15 months old (today). Good Lord I need some sleep!

I'm tired of ....

posting about all the trauma in my house. So I'm not going to, suffice it to say we are still in the trenches.

Today I am going to focus on this -

At 16 months old my son uncurled his legs!!!!!!!!!!!!!!!!!!!

Until now he remaind curled up tighter than an armadillo. He would moan if you forcefully straightend his legs and tried to make him bear weight. He would only last a few seconds if you were lucky before he buckled, most times you couldn't even get him into position. Even when you lifted him his legs would curl up with him. BUT NOT ANYMORE!

He actually did it a few days ago and I was amazed and kept testing to see if he would leave his legs straight when I tried to put his feet on the ground. And he did!! I actually sent Victoria into a fit of pain because I made her laugh with pretend walking him around to see if he would leave his feet on the floor.

My life before required so much more to bring joy into my world. But the BEST thing about having Tomas is that joy, real joy - God praising, heart exploding joy, comes in much smaller packages.

And that God sent that moment to me in the midst of one of the most exhausting weeks I've had in some time speaks volumes about how much He loves me.

I can't even believe what has happened in my house in the last week but it is true.
Yesterday Tomas started getting really snotty and by last night he was gagging/retching.coughing/chocking so bad he couldn't keep his sats up. So I put his O2 on and added a bile drain (diaper at the end of an extension set connected to his G port) to drain sinus gunk that was dripping into his stomach.
I increased his saliva meds and added a decongestant and put him to bed in his infant chair so he was more upright than usual.
I spent the night suctioning, giving meds, fixing cannulas, and comforting baby. By early morning I was exhausted. I was so tempted to go get Mike (who was sleeping with Victoria because she is still pretty miserable - that surgery sucks; I don't care what anyone says about all the ice cream and pudding you can eat) but I didn't because I knew he had to wake up early and drive for 6 hours to get to Houston for an appt. today.
At 5:30 Tomas woke up snotty and crying. I stumbled to the crib and made sure all his lines were clear to lift, the feed line, the pulse ox line, the O2 line, BUT I FORGOT about the bile drain!!!!!! Sure enough it was stuck under the infant seat and when I lifted him up, the whole blankety, blank, blank thing came popping out!!!!!!!!!!!! Arrgg, I still can't believe it.
He wasn't upset as he was already miserable from whatever cold or thing he has going on (I actually think it looks a lot like the RSV he had last month but I can't even really think about that right now). I put his old G mic-key in and am running pedialyte through until I can call the GI in a little bit. I am watching for signs of low blood sugar as he was on pedialyte when it happened before.
Mike had to cancel his business trip and I know where we are going to end up today. Either the doctor will see us first and then send us over or tell us to go straight there. The worst part is, I don't know if anesthesia will clear him to go under (for tube placement) since he is so congested. And that is even if the hospital has his tube in stock. Ughhhh....Arrgghhh... and all the rest

Please pray for me as I am nearly out of reserve. I know the Lord will lift me up and I know the Blessed Mother is wrapping me in her mantle. There is no other explanation for why I am so calm. I'll try to update later today, although when I was at the hospital last time (3 DAYS AGO!!!!) I couldn't get a connection, but I'll try.

The last 72 hours

I must begin at the end and say everyone is home and resting. Why is that such a big deal? I shall begin...

On Wednesday morning Mike and I (and Olivia and Tomas) took my fireball princess in to have her tonsils and adenoids removed. The surgery went great and her doctor said her adenoids were very large and her tonsils were yucky (sparing you the gross details) and that it was a good thing everything had come out. She woke up in tons of pain and was crying, which brought on an asthma attack, which brought on breathing treatments and O2 support, which brought on several extra hours at the hospital. By the end of the day though, she was home and tucked in and getting medicated by parents pleading with her to open her very sore mouth.
On Thursday morning and again Thursday evening Olivia had severe enough asthma attacks to bring on wheezing. A phone call to the doctor, increase in treatments, and a CT scan for her come Monday morning. Victoria was of course, quite miserable, but all in all did very well. She didn't eat, but was able to take in enough liquids to hydrate herself. (See, I really ask very little of my children!).
That night we were all sitting on the bed playing a game when Tomas' pump started beeping clog in line. That's happened plenty before so we just started it up again and moved on. Well it kept alarming at closer and closer intervals and finally stopped pumping at all. I tucked everyone in and took the baby to my room to figure out what was going on. His tube was so clogged I couldn't even budge the syringe when I tried to flush it. What to do, what to do? It was 10pm by then and that meant a trip to ER and a middle of the night saga. No thanks. I decided to try running pedialyte (less likely to reflux) real slow into his G port to keep him hydrated through until morning. He did fine and didn't have any aspiration (thank God) and woke up around 6. I took a shower and Mike was holding him and Tomas was resting his head on Mike's shoulder. Odd, he just woke up, he shouldn't really be tired yet. But I put him in the car and left my 2 day post-op daughter in capable hands with the stern wifely warning to "BE NICE" and off the wee one and I went.
It is an hour drive to either the hospital or the GI doc's so I figured I'd just head out and call the office on the way to see what he wanted me to do. Well, he was in surgery so it was to the ER we went. During the triage assessment Tomas started getting floppy and very groggy. When we went back to the exam room he was a rag doll. They drew labs and his blood sugar was 39!!! They gave him sugar water in his IV and it was like a magic trick, he opened his eyes, wanted to sit up and was somewhat playful. That lasted about 10 minutes and then he fell asleep . The nurse finally got his tube unclogged and we got moved upstairs.
After clearing up all the misinformation sent upstairs by the ER (really they got about 6 things wrong, don't get me started, ER is great if you have been shot or stabbed or OD'ed on something, but medically complicated kids - not so much!!!), the floor pediatrician consulted with the hospital endocrinologist and they decided to try to recreate the episode. He was taken off his feeds at midnight and given just saline water in his IV. But no luck. He fasted for 9 hours and his sugar never dropped below 77.
So here we are, home and resting and no idea what caused his sugar to drop. He does have an upper respiratory infection, but that is not enough to keep him in the hospital. I heard a wheeze before when I was changing his diaper so I'm not sure his whole saga is over.
Victoria is gradually healing and perking up. Olivia had no episodes yesterday or today with her increase in neb treatments, and Tomas' surgery has been set for the 29th. When I called my husband to tell him we were on our way home he said he was anxiously awaiting my return! I tell you that man makes me laugh! He couldn't wait to hand the reigns back over.
After everything that happened yesterday I am so grateful to God for His mysterious ways. If Tomas' tube would not have clogged I would not have taken him to the ER. I would never have guessed blood sugars if he crashed like that at the house. Now, it will be my first guess, but not before. Tomorrow I will rest and offer my Sunday to the Lord, then come Monday morning we are back at it with a CT scan for the etherial one, and an endocrinology follow up for the enigmatic one (and possibly pulmonary follow up if that wheeze doesn't go away).

See I told you it was a big deal that we are all home and resting.

I'm also adding that I love my friends, near and far, who are always there for me. Be it a starbucks run or a woe is me phonecall.

Easter Pictures

Note: All Tomas photos were taken by my 7 year old. She did good!

I returned to church today after many weeks of absence. First with the RSV, and then the winter lasting so long, Mike and I decided to not take Tomas out. When the weather finally improved the mono struck the girls. Mike did stay home a few Sundays and I went; but mostly with 3 kids not feeling well I was the one who stayed home.
On Holy Thursday when Jesus was washing feet, I was serving sick kids meals in bed, bathing tired bodies, and unifying myself to Christ through the service on EWTN. On Good Friday, when the world turned dark and shook, and the Temple veil was torn in two, I died Easter eggs for a little girl who was too sick to finish hers, and cried in her bed because she didn't have the energy to, and unified myself to Christ through the service on EWTN.
But today, joyful, glorious, today we made an all out effort to get them up and to Mass. I wanted to go to the 8am because I knew by our normal 11am time the girls would be crashing. That meant a very early morning, dressing children while they were still in bed, brushing their hair in bed and helping brush teeth and put on shoes. We made it with a few minutes to spare and got ourselves settled. No big deal, I've gone to Mass for 37 years.
But today, after a long absence felt most deeply these last few days, when the multitude raised its voice for the entrance hymn, "Jesus Christ is risen today, Alleluia!"; I wept. Small tears to witness a tremendous sense of gratitude. My senses were awash in the glory of a Catholic Mass, and for one hour my heat rested in Him.
The rest of the day was pretty typical, egg hunt, baskets, lovely friends for dinner, and an exhausted me trying to finish this post so I can get to bed. Pics tomorrow and the story of last years Easter miracle.
Happy, happy Easter everyone!