HOME AT LAST!

Tuesday, December 23, 2008

"Your love, O LORD, reaches to the heavens,
your faithfulness to the skies.
Your righteousness is like the mighty mountains,
your justice like the great deep.
O LORD, you preserve both man and beast.
How priceless is your unfailing love!
Both high and low among men find refuge
in the shadow of your wings."
Psalm 36: 5-7

YAY! WE ARE HOME!

Monday morning at rounds the doctors decided we could go home that day! Usually they like to see babies eating well for at least 48 hours before they discharge them but since Tyson had a really good weekend and he was eating well for just over 24 hours, they let us go home earlier. They made us promise that if Tyson stopped eating so well at home, we would re-insert the tube. Of course, we agreed and would definitely do what we need to do in order for him to grow healthy and strong. The doctors also gave us the "option" to stay one more night if we were more comfortable with that. (lol!)

Jim and Debbie were in Toronto yesterday because Deb had an appointment to go over the results from her surgery. They dropped in for a visit and took us out for lunch (ALL of us!) and we enjoyed a nice time with them.

It was nice that we received the news that we could go home while Brian was still around in the morning, otherwise he would have had to drive back and pick us up. So, although I didn't get to phone him and say, "Honey, we're coming home!" , we received the news together and shared the exciting moment together as a family. The kids were jumping up and down in the cafeteria at breakfast because they were so excited!

We didn't get home as early in the day as we had hoped since we had to wait around for a few hours for Shoppers Drug Mart to fill out Tyson's prescription. We made it home last night at about 9 pm. Mom and Dad Spanninga met us at our house since we knew things would be pretty hectic with unpacking the van with three weeks' worth of stuff, getting kids into bed, feeding Tyson, administering his meds, etc.

MAN DOES IT FEEL SOOOOO GOOD TO BE HOME!

And in time for Christmas!

And without Tyson's feeding tube!

GOD IS SO GOOD!

God has answered all our prayers. Tyson not only made it through this serious surgery, he also progressed at a good pace, came home without the feeding tube we dreaded, and in time to spend Christmas with his family! He certainly doesn't look at all like the sick little baby we saw

the day of his operation!

Today was a great day. The morning was VERY busy with getting kids ready, breakfast, medications, etc. The boys are both home from school now for Christmas holidays so it is a bit more work, but Braden and Merrick are both pretty good helpers.

Mom Kottelenberg came over for the morning to help me with a few things around the house and Dad Kottelenberg came over and did some snowmobiiling with the kids. He actually drove over a snow mobile that we can keep! The boys were pretty thrilled about that!

Mandy came over for a visit too so it was nice to have her help with lunch. We've also asked Mandy to do the honours of holding our little guy for baptism and she was pretty tickled about that!

Tyson is continuing to do well. He still does throw up about once a day (instead of every time he eats) but this will get better once the meds take their full effect. Now that the feeding tube is out, that should help a fair bit too. He is a pretty happy baby so far and his brothers and sister love him to bits! He is sleeping in a cradle in the living room until he begins sleeping longer at nights, and then we have to figure out which room we are putting him in.

Tyson is on a number of medications for the next little while. The most important (and frightening) one is Enoxeparin. This is a needle that we inject into his leg twice a day. This drug is an anti-coaggulant (blood thinner) that will prevent his blood from clotting around the BT shunt the surgeons put in his aorta. From what we understand, this drug can be discontinued after his second surgery since the surgeons will then take out the shunt and do something more permanent. (The reason they cannot do something more permanent in the first surgery is because they have to wait till the lungs are more developed.)

It took a while for my mind to get over the fact that I would have to poke my son in the leg with a sharp needle twice a day, but you just do what you gotta do! After I did it the very first time, my eyes filled with tears and Brian was laughing at me because there I was crying and Tyson let out one little howl and that was it! It obviously hurt me more than it hurt him! And tonight when I gave Tyson his Enox, he didn't even flinch! So already he is getting used to it.

Tyson is also on two different meds to prevent reflux (Ranitidine and Domperidone), one diuretic to encourage passing of fluids (Furosemide or Lasix - makes him go pee), Captopril to keep his blood pressure stable (very common after heart surgery), Tri Vi Sol (Vitamins A, D and E) and Folic Acid. The last two he can go off once he starts taking breastmilk and hopefully the other he can discontinue once he is stronger and more stable. The Enox injections would continue though until he has had his second surgery.

Tyson will continue on the portagin feeds until January 13. That is the date the doctors have said I can start breastfeeding again.

Because of Tyson's Enoxeparine injections, we qualify for some home care from CCAC (Community Care Access Centre.) A nurse came today and weighed him, listened to his heart rate, breathing rate, checked his incision site, reviews his eating routines, and basically makes sure things are going well. We are documenting how much he drinks, when he spits up, how many wet diapers he has, etc. since it is important to know that he is getting adequate nurtition and not burning too many calories. We were happy to hear that we would be getting some home care, since this makes us more confident taking him home and being on our own again. It also helps knowing that someone is there organizing things for us, helping us remember to book appointments, and directing us wherever we need to be directed.

We will be heading back to Sick Kids again next Tuesday for some appointments. He will be having another chest and lung x-ray, another echocardiogram of his heart and a visit with the dietician to monitor his weight gain. From there they will decide when his next appt will be, and he will be seeing Dr. Murphy regularly as well.

Then on February 4th he has a full-study echocardiogram scheduled (the same scale one-hour echo he had on that Monday he was admitted to Sick Kids) and a follow-up appointment with the Staff Cardiologist Brian McCrindle.

Tyson now weighs 7 lbs 12 oz, (which is still less than his 3 day old cousin Mikayla!) but in no time he will begin putting on weight and becoming much stronger. We were given a baby scale to use for the first month so that we can weigh him every day and be confident that he is gaining well. He is supposed to take in at least 350 ml of portagin daily and Tyson is taking almost 500 mls daily. So even if he does spit up an entire feeding once a day, he will still be doing fine. the baby scale will also come in handy once I start nursing again, since I can weigh him before he eats and again after he eats to get an accurate measurement of fluid intake.

Wow! I still can't believe I am typing this blog post from my own computer at home! It does take a little longer on dial-up but we are getting high speed soon. The modem is sitting right here beside me but it's just a matter of hooking it up. Soon enough.

Tomorrow my parents are coming for a visit (and will also be swinging around the corner to see their other new grand-daughter!) Brian also hopes to be home early in the afternoon. I am looking forward to a wonderful Christmas season with our FAMILY. TOGETHER. AT LAST!

GOD IS SO GOOD!

Brian and Mel

Braden, Merrick, Kenya and Tyson