Friday, January 15, 2010

God's sense of humor in overdrive

Ok, apparently this sense of humor can expand to cover the day BEFORE we leave on vacation.

1st - Cranky neighbor lady comes to complain about my dog barking - who I had just told Olivia to bring inside - it is not so much the complaint as the crankiness that upset me.

2nd - Home health came yesterday to deliver the travel concentrator (oxygen machine). Except no one checked the order form against the equipment so the driver showed up with a dosage regulator instead. They were supposed to bring the right stuff today. Doorbell rings, driver shows up with a smaller wall unit than the one I have now - fine for nights and when we are at families' houses, but what about DisneyWorld? They brought me SEVEN tanks of oxygen!!! They have no "travel concentrator" So what was the conversation I had with them two weeks ago scheduling the delivery of the travel concentrator??? They don't know. Luckily, we have a fairly large van (Eurovan) so I think I can fit everything, but I was going to bring my sister (whose pregnant - yeah!) a bunch of baby stuff which I will now have to ship.

3rd - The cardiology office calls because I sent back the holter monitor Tomas wore the other day without the leads. I thought the nurse said I could through away the leads - just like the ones in the hospital. NO, they say, they said you could only throw away the sticky tips of the leads. They will contact the manufacturer to contact me about replacement cost. Lovely.

4th - Victoria fell down the stairs - HARD. She has fallen a dozen times before  - not the most graceful child in the universe, but this time she just lies there and crys. Great. Best I can tell no broken bones and she did not hit her head, but she can't stop crying that it hurts - and she is not a cryer. Off to the pediatrician at 3:30. He orders x-rays of coccyx. It could possibly prevent us from going depending on whether anything has slipped.

5th - Leaving the imaging center at 5pm (not bad for time really), and the pediatrician calls with the results. She is fine no broken anything! Just give her motrin and have her sit on a pillow till the tenderness is gone. However, she is majorlly constipated. All the way through her bowels, which are extremely distended. I know this is a problem for her and we have been battling it for a while, but he said it needed urgent attention tonight or she could run into trouble. He told me to get pedia-lax (I had been giving her mira-lax) which is an enema. He said it should work tonight and then to resume it after we get to FL.

When I said I had everthing perfectly planned I knew I was jinxing myself, but come on! Anyway you can bet  I will breathe a sigh of relief when we are actually underway tomorrow. Then I will be enjoying the FL sun, fun, and family for two glorious weeks.

Thursday, January 14, 2010

Tomas saw his cardiologist Tuesday to follow up from all those bradycardias he was having. For the second echo in a row his ASD and VSD were closed. It is such a relief to close that chapter and move on from being a cardiac patient. He is not having the bradys anymore because I stopped all G-feed attempts. He just was not tolerating them. Between the reflux, and the gallstone it wasn't worth it . But the Dr. did say that he would ALWAYS recover from any he did have because his heart was strong. Can't really get better news than that!

As usual with Tomas something else is always going on. Tuesday morning he had one of his "dying spells" again. I really wish I had another way to describe them but when I use that term the doctors all know what I am talking about, otherwise I have to go into a 100 word explanation of what happened. Basically, he refluxed, then aspirates, then airway shuts down. This one was very quick (about 5 seconds), but it is the first time it has happened since he has been on J-tube feeds. It also means that clearly the nissen isn't holding otherwise he wouldn't be refluxing at all. Later on that day, I couldn't get his pump to feed into him. It would run just fine when it wasn't connected to him, but as soon as I hooked him up to it the "clog in line" alarm would go off. I called his GI doctor who never calls back before the end of the day.  The GI doctor can't fix the tube anyway because it has to be placed in the radiology dept. So I had to debate with myself as to wether to take him to ER or not. It is surely not a life or death thing but I still didn't have a way to feed him. So I weigh the ER germs against dehydration and let a few hours pass. I decide to give it one more try before we head out (Mike is in NJ so it is just me and the kids), and it worked!!! Yeah, no hours spent in ER!

When the doctor called later on he said it was probably a kink in the tube, but wether the kink caused the wretching and gagging or the wretching and gagging caused the kink, was a chicken and egg kind of thing. It worked fine all night and for most of yesterday. There was a 2 hour period where it was stopped up again. I am thinking this means that tube is on its way out. I am just praying we can make it through our 2 week trip to FL with no incidents (don't you all laugh at me - it COULD happen).

Seriously, I don't know why I though I could do this trip. Tomas has NEVER gone 2 weeks without soemthing going on. I think 8 days without a need for a doctor is his record. Mike is driving us from TX to FL, but then I am dropping him off for his work conference (poor guy) and the kids and I are traversing the state. Moments of panic are creeping in. But I am going to be positive. 3 of the 4 towns we are visiting have great children's hospitals nearby. The 4th one is about 2 hours from the nearest children's hospital, but that is still drivable for an urgent mater (not a true emergency, then we'd just go to wherever and they can transfer after he is stable). I got a travel concentrator from home health, an adaptor so I can charge medical equipment in the car, enough supplies for 2 weeks, the dogs are boarding, the mail is stopped....See I have it all planned out. I have planned for EVERY contingency, crossed ALL my T's, dotted ALL my I's. Hah! This is usually when God's sense of humor goes into overdrive.

So Saturday Tomas turns one and Saturday we head out. He loves it when the girls and I sing to him and grunts for more until we are all hoarse. So we'll serenade him with "Happy Birthday" as often as he wants while we drive east. I've already gone through all my emotional stuff for his birthday and we are all ready to get to some warm weather and visit family and friends. We can't wait!

Sunday, January 10, 2010

The approaching birthday

As Tomas's birthday nears my husband and I have been reliving the events of his birth, and talking about everything that has changed for us. It all boils down to this - our lives are so much harder now, and our lives are so much better now.

I love to read the blogs of mom's with DS (or other special needs) kids who are a little older than Tomas.  I am so glad to see the sense of thankfulness and gratitude for their children doesn't fade with time. I don't want this sense of wonder and gratefulness to end as he gets older. I love all my children and am grateful for all my children, but Tomas' arrival and the fragileness of his being made me love them MORE.  How cool is that?

I try to pray this every morning. I have it taped up near the coffee pot (although, I must admit some mornings my mind is so set on coffee that I forget the prayer)

Morning Prayer,

I thank you, Lord,
for the wonder of my being,
for giving me another day to love and serve you,
and enjoy the awesome beauty of your creation.
May I often think of you during this day.
Inspire everything I say and do this day.
May it all begin from you and,
with your unfailing help,
be carried through for your glory;
through Christ our Lord, Amen.

Wednesday, January 6, 2010

I saved my New Year's post to do together with Tomas' birthday post (January 16th). I have prayed many times to find the right words for this message. I think it must begin with a confession.

I have never prayed for God to heal my son. I could never find the right words. Everything I thought about saying sounded to me like I didn't want the child God had given me, but that I wanted a better one. One without three holes in his heart. One without luekemia, though treatable at birth, which has a thirty-three percent chance of returning before his third birthday. One whose intestines were attached to his stomach. One whose airway did not collapse, whose lung did not collapse, whose liver worked, who could eat, and drink, and nurse, and not have life threatening non-breathing episodes. One who did not need oxygen support, or a feeding tube, or constant monitoring, multiple doctor visits every week, or frequent hospital stays.

My husband tried to give me the words, my mother and friends tried to give me the words, but I couldn't say them.  They all prayed for his healing. I prayed instead for the strength, wisdom, and comfort that I needed to care for this baby while he is mine. I abandoned all to God. All of it, from the major surgeries right down to every last blood draw and lab test, I placed in His hands. And if you knew me well before, you realize what a tremendous transformation took place for me to be able to let go like that.

This past year has brought the kind of change that hurts. I watched my husband almost break from the burdens of a difficult pregnancy, missing Tomas' birth, starting a new job, selling our old home, buying a new one, and moving his entire family including a 3 month old medically fragile child halfway across the country. I watched my beloved daughters give up everything they knew. Their lives went from fun and fancy free to mommy at the hospital, at the doctors, labwork, parents having whispered talks, and it only got worse after Tomas was born.

 While this was happening the Lord of all creation was tending to lowly, unworthy me. He built my heart up strong for the journey ahead. He left me with no one to turn to but Him. He began to show me the unimaginable joy that comes from picking up your cross and following the Lord. He used people, some of which I had never met before, to say or do exactly what I needed said or done. He knit my family tight. Where there were holes and gaps before He made patches of charity, faith and a hope that comes from knowing my marriage is a gift from Him, and that my children are from Him and meant to return to Him.

Over the first few months of Tomas' life, we were dealt one devasting blow after another. Really. At one point a doctor walked into the hospital room and said, "I have some devasting news." This was AFTER we found out about his heart, liver, leukemia and airway. I was thinking "what could there possibly be left?". It turned out to be that Tomas was aspirating and we couldn't feed him by mouth any more, not really devastating to me since it would prevent him from going limp in my arms due to the reflux shutting down his airway, but you get the idea of how stressful things were there for a while.

Then came that dreadful night after the nissen surgery when I watched him nearly bleed to death. Somewhere around 3 in the morning an angel came to his crib. I didn't so much as see an angel but I became aware of an angel, and that was the moment I let go. I knew that even if Tomas didn't make it I would be grateful for the time he was here, for all the wonderful moments his life brought to ours.

Like the time I sat with Olivia and Victoria on the sofa and tried to explain what Down Syndrome was and what our new baby was going to be like.  I tried to explain how his eyes would be a little different and how it would take him longer to learn things than most people, and just tried to make a 5 and 8 year old understand. At the end of the conversation Olivia asked me, "Just one thing, is he going to want to play hide and seek?"
Or when a few days after he was born and the girls were finally allowed in to see him Victoria said, "But mom, he has two eyes just like us!". Wow, I must have done a really bad job of trying to explain things to her. There are so many more moments like those that I can be nothing but grateful for Tomas.

And that is were we are, nearly one year later. Grateful for a baby who showed us the way. How fitting it is that there are still a few days left of the Christmas season. There was once another baby who showed all of us the way.

To all of my dear, dear friends, old and new, please know that you are all a part of what took place. Every kind word and gesture has been written in my heart, and, I thank God for you.

All glory and honor is Yours, Almighty Father, now and forever.