TYSON MATTHEW KOTTELENBERG


"The Lord is faithful to all His promises, and loving toward all He has made." Psalm 145: 13b

This blog is about our eight year old son Tyson. Tyson was born with serious complex congenital heart defects, (Hypoplastic Right Ventricle, Tricuspid Atresia, Coarctation of Aorta, Transposed Great Arteries, with VSD and ASD.)
In short, the right side of his heart is completely under-developed (he has half a heart,) his main arteries are mixed up, and his aorta is narrow. He has undergone 3 open-heart surgeries and 5 heart cath procedures to try to 'repair' his heart. Sadly, Tyson has also been diagnosed with pulmonary vein stenosis, a fatal disease in the veins of his left lung. Typically, having the 3 palliative surgeries buys children with single ventricle hearts many years before eventually needing a transplant. But because of the narrow pulmonary veins, this increase in pressure is causing his blood to shunt the opposite way across his Fontan fenestration and surgeons are not able to close the fenestration. As a result, he remains on coumadin and is heading down the transplant road faster than we'd originally anticipated. He's still doing AMAZINGLY well all things considered. We entrust our dear son into the hands of God, knowing that in all things God works for the good of those who love Him!

Home from Sick Kids...but Ty still has the JP

Hi all, really quick update: Thursday's number was 16cc. Today is very minimal too. Chest x-rays reveal that Ty's lungs are "prestine" (very clear.) Instead of pulling the JP and weaning him off steroids, they've decided to stop steroids abruptly (perfectly safe since he's only been on them for one week.) Then if there is no re accumulation of fluid between now and Monday, we go back to Sick Kids on Monday for a tube pull. It's better to err on the side of caution, because if the JP gets pulled too early and the fluid re accumulates, having to reinsert a chest tube is a HUGE step backwards, and would be very painful for Tyson (and us!)

We are happy with this decision. A prestine x-ray is waaaay more important at this time than a JP pull :) It means another trip to Sick Kids, but at least we'll be confident that Tyson is ready to be done with the JP for good.

Hope you all have a HAPPY NEW YEAR! We are pretty excited to be celebrating together as a family :)

GOD IS GOOD!

Mel:)

No JP pull for Ty today...

We won't be going to Sick Kids today for a JP pull today :( Yesterday's drainage number was 28cc, slightly higher than they'd like to see for a JP pull. I was told a few days ago that any number under 30 cc for two days in a row would bring us toward a tube pull. But if we want to get technical, the protocol is that the volume has to be less than 2 cc per kg of body weight. Tyson is 13.5 kg X 2 cc = 27 cc. Tyson number was 28 cc. Ugh.
We will be going to Sick Kids tomorrow no matter what the number is. If it's a good number (under 27 cc) the tube will be pulled and hopefully we can be sent on our merry way?? If the number isn't low enough, Tyson and I will be staying until things get sorted out.
I am pretty disappointed about this. I tossed and turned all night wondering, "What's his number today? Are we going to Sick Kids? Are we staying home?" Brian and I both got up early this morning and packed our overnight bags, and kids' bags, we got the kids up for breakfast, we even had to wake Tyson up since he's a late sleeper. Only to find out we'd be staying home. I don't think I've ever packed bags and unpacked bags for us and the kids so many times in two months time. The kids have spent so much time away from home the last little while, I'm surprised they don't suffer from anxiety not knowing where they are going to be on any given day.
It's been great to be home for the holidays, but it hasn't been easy with the extra stress of the minimal fat diet, the meds, the JP tube care, always constantly watching his colour/breathing to make sure fluid isn't backing up into his lungs, making sure he doesn't fall or bang his head, protecting his sternum and not picking him up under the arms. It would be great to put this behind and us and have Tyson completely back to normal. He hasn't had a real bath in three weeks, he's been wearing pj's every day since his surgery because the JP gets in the way of his real clothes, he can't wear proper undershirts because of the JP, he hasn't been outside to play in the snow with his siblings because it's too risky with the JP, we don't take him to any public places which makes running errands and grocery shopping difficult. We've also been cooped up in the house for three long months in preparation for this surgery. It would be nice to get rid of this JP and have Tyson be normal again. *sigh* I know, all in God's time :)
I hate the idea of spending New Year's Eve in the hospital again, but at least it's not for any huge complication. I will get over it. Eventually. I just hate NOT knowing. If Tyson's numbers for today aren't as good as we'd like and we have to stay, Brian will still be spending NYE with his kids at the party we've been invited to and maybe come visit me and Ty the next day. Our family needs to stay as normal as possible.
I know I am pretty much ready to get off this roller coaster, but it just keeps going and going :(
Brian has kindly reminded me that as long as Tyson is blessed with life, the roller coaster will keep going and I need to accept that. With the pulmonary vein stenosis and the Coles procedure that didn't go 100% as planned, and now the AV block in his heart (lower heart rate,) it's not over yet. It will never be over for as long as Tyson lives. So I am going to try to enjoy the valleys as much as the mountains. The roller coaster is worth it, for every day that God gives us with our son. When I think about how much God loved us that He gave His only Son for us, I think WOW! That's a LOT of love! God loves us so much, and I take comfort knowing that there is a plan for Tyson and for us. Whatever that plan is, and for however long we have to ride this emotional roller coaster, we know that GOD LOVES US!
"This is love:
not that we loved God,
but that He loved us
and sent His Son
as an atoning sacrifice for our sins."
1 John 4: 10

Tuesday, December 28, 2010

So I figured out completely by accident today that the amount of steroids we're giving him is only HALF the amount we were supposed to be giving him! I felt like a pretty big heel when I called the NP to let her know about it. There was a miscommunication (of lack of) between the pharmacist and me, and we were only giving him 5 mg twice a day, instead of 10 mg twice a day. The NP was pretty thrilled that his body has responded so well to only half the steroids, we've been seeing good results with only half! It hasn't done Tyson any harm to only have half the amount, but it would have produced even better results if we'd given him the correct dose right away. So we're going to see what Tuesday and Wednesdays numbers are, then make a decision on Thursday morning if we'll head down to Sick Kids for a tube pull on Thursday, or if we'll give him a few more days. They would like to see numbers hovering around the 30 cc mark for two days before the tube comes out, then wean him off the steroids at home and continue with the minimal fat diet for 6 weeks. So we might be going to Sick Kids on Thursday, or it might be Friday, or it might be Saturday. It all depends on what the real dose of steroids does to his drainage volume. We've also taken the JP off suction, giving his body a chance to expel the fluids through other means and the JP only collects the "extra" amounts. We'll see what happens. We've been told to pack our bags still just in case, because Murphy's Law says...
Mel:)

Sunday, December 26, 2010

It looks like the steroids are kicking in! Yesterday's drainage amount was 72 cc! (cc is same as ml) Considering Thursday's number was 294 cc and Friday was 169 cc, 72 cc is a GREAT number!
On Saturday I kept stripping the tube ("milking" it) because I was convinced there was a blockage in the tube, but no, it's just draining a lot less! The steroids seem to be taking effect.
As far as the side effects, prednisone can cause insomnia, a ravenous appetite, hyperactivity or irritability, and if it's taken for longer than a week it must be weaned off slowly as the body can become very dependent on it. So far Tyson is not having difficulty sleeping but he is acting quite crazy lately! I'm not sure if it's the steroids, or all the colourful candy he's been eating this holiday season :) He is also eating a lot more at mealtimes than normal, which is kinda nice to see.
I'm pretty sure that before the JP can be pulled out, we'd need to see numbers of less than 20 cc per day. We're not there yet but we're getting closer, and if the numbers continue to decrease every day, it might be possible to have the tube pulled on Thursday at our next clinic appointment. That's what we keep praying for. And that would also prevent another hospital stay, which we don't really want either. It's been so nice to be home for the holidays, it would be great to just stay here!
Thanks for checking in, and please keep praying that we can actually stay home for good.
Mel:)

Post-Op Appointment Update # 2

Another change of course...
Kathleen the nurse practitioner phoned bright and early this morning. Yesterday she sent away the fluid draining from Tyson's JP for testing again. If you can recall from an earlier post, there are three levels that are tested when they send the fluid away. Triglycerides, chylomicrons, and lymphocytes. If any one level is higher than the hospital protocol's set limit, they will treat as chyle. Last time they tested, the triglycerides were very high, but not higher than their limit. (Limit was 1.1, Tyson's level was 0.99) This time the triglyceride count was very good (0.39 because he's on the minimal-fat diet) but his lymphocytes were very high, higher than the hospital's limit. This means that there has likely been some sort of damage to Tyson's lymphatic system during surgery. The chylomicrons were still negative, but since there have now been two levels way too high, they are now considering this a chylothorax and will be following the proper hospital procedures to treat the chylothorax. If we hadn't followed their "recommendation" last week to have Tyson on the minimal fat diet, we would now be "ordered" to start following it anyway. So we are one week ahead of the ball game in bringing down his counts. (Unfortunately, he has to remain on the minimal fat diet for 6 weeks AFTER the tube has been removed!) Also, because it is now being treated as chyle, they are going to follow that protocol, meaning we are starting Tyson on steroids TODAY. Kathleen is calling in the prescription this morning to a local pharmacy here, and Tyson will be starting it as soon as we can. The steroids aim to strengthen and heal the lymphatic vessels that have been damaged and as a result are too porous, that is why they're leaking. I am praying that one week on steroids is enough to bring the fluid draining down, and that we won't have to go through the whole TPN in the hospital. Please pray along with me, that we can avoid another lengthy hospital stay.
Thanks.
Mel:)

Post-Op Appointment Update # 1

Today was a pretty short day in the Sick Kids world. We were there by 7:30am and on the road again by 11:30am! Record time! Although the results from today's tests came back quickly enough, we're not too sure we like the news we've heard today :(
Tyson had a number of post-op tests today, as well as a visit with the nurse practitioner (NP.) He had blood work done to check his INR levels, which are a little on the low side. We have to do some tweaking of the Warfarin before we get it perfect. The chest x-rays revealed that the lungs look a little wetter than when we left last week, but on examination Tyson's lungs sound good. He isn't coughing or wheezing, and we always keep a close eye on these sorts of symptoms anyway. Changes in breathing can mean the fluid is aspirating into the lungs. Tyson also had an echo, which he laid perfectly still for, for over 20 minutes! I am hoping this means his next full-scale echo doesn't require sedation...that would make life so much easier for us! Anyway, the echo revealed that his fenestration is still open (which is good) but the mitral valve (between LA and LV) is leaking more than it was at the time of surgery. This may or may not be serious, however, we were told that after the Fontan the leaking would stop since the pressures in the heart would be completely different.
Tyson is feeling well other than the draining. He's still draining over 130 mls per day. But he hasn't been on any pain meds since Monday, which is awesome considering he still has a chest tube. Usually that still causes a fair amount of pain. He is ok with it, as long as we don't touch it or put pressure on his chest. We may not lift him under the arms for 6 weeks post-op, or pull him up by the arms, so we have to scoop him up under his bum and head. It's not too easy to do, and very awkward to get him out of his stroller or car seat.

The NP Kathleen, upon consultation with the cardiologist, decided not to change anything with Tyson's meds or diet at this time, but let us stay home to enjoy the holidays. BUT...if the draining does not stop or at least significantly decrease in volume by next week's clinic appointment on Thursday, we've been told to pack our bags :(
Tyson has been on the minimal fat diet for a week now and there has been no change in the amount of drainage. Usually that's a good indication that we're in it for the long haul. So they let us go home to enjoy the holidays with our family, but it looks like we may have to stay again starting on Thursday. They're not sure what the plan is with him yet. Since he isn't technically chyle positive, they aren't sure if following the TPN route is the way to go (Total Par-enteral Nutrition: no food or drink by mouth, not even water or chewing gum...and he is fed intravenously for a few weeks until the draining stops.) In this way they bring his entire digestive system to a hault to see if that helps the drainage. I have no idea how that works, but apparently it does. They also talked about prednisone, a steroid which can help minimize the draining. It depends on what the team of cardiologists decide to do about Tyson's condition. Since he is chyle negative, they might not even start TPN or steroids but do a heart cath instead to make sure it isn't cardiac related. Kathleen said that Fontans do drain a lot, because sometimes the lymphatic system gets stretched during surgery and it takes a while for it to heal. There may have been damage to it and it will need to be repaired surgically, but a heart cath will tell them if that is the case. Kathleen also mentioned that a heart cath will also tell them if these problems are related to the pressures in the pulmonary artery. The Fontan changes the direction of the blood flow. At this point, the oxygen-poor blood from his upper and lower body is not being pumped to the lungs, but it flows through the lungs only by the pressure that builds up in the veins. So now his left side is responsible only for supplying blood to the body, while blood to the lungs gets there by natural flow. So as of right now, his pulmonary artery is receiveing waaaay more blood than it ever has in the past two years, so there might be too much pressure in the entire pulmonary branch (pulmonary artery, veins, capillaries) so it could be causing too much pressure in the lungs, thus the excessive draining. I'm not sure how much of that most people will understand, since I am still trying to wrap my brain around it myself. But either way, if it's a problem with the heart itself, the heart cath will give them those answers.
So we might get to Sick Kids on Thursday and be told we are staying put for a few weeks while they try the TPN or steroids, or they might tell us to come back the next week for a heart cath procedure. At this point we don't know yet. But we'll be packing our bags and preparing for a long stay.

We'll see what next week brings. Maybe there will be a miracle and the draining will stop by then????? LOL Not likely, it looks like we're in it for the long haul!
Please keep this matter in your prayers. It would be great if the draining would STOP and we could go to Sick Kids next week for a JP pull instead of a long stay!
In the grand scheme of things, we have to look at this as only a minor inconvenient complication of the Fontan surgery. It certainly could have been much worse, and at least this isn't a life-threatening complication. It just sucks:( It wouldn't be fun to have to be back in the hospital for what could be a few weeks, and to have Tyson on TPN and not allowed to eat or drink. He seems too healthy to be in the hospital at this point!
As always, we entrust Tyson into our Father's hands, knowing that He has all things under complete control :)
Mel:)
"Who of you by worrying
can add a single hour to his life?"
Matthew 6: 27

Settling into Routine

The LORD is my light and my salvation-
whom shall I fear?
The LORD is the stronghold of my life -
Of whom shall I be afraid?
Psalm 27:1

Life at home has been wonderful so far! Wonderful, and BUSY, but wonderfully busy :)
Tyson settled in nicely right away. He is definitely a home-body and loves to just spend time in his own surroundings. Once we got home, he needed ibuprofen a few times, but has now been off even that since yesterday morning. He finished off his antibiotics for the infected incision (which is looking and healing great) and he is down to Lasix twice a day now, instead of three times a day. He still takes his Warfarin (anti-coagulant) at dinner time. It's a pill we crush and then hide in a spoonful of yogurt or apple sauce.
The minimal fat diet has been a bit challenging in some regards. He does like fruit and bread and cereal, so breakfast and lunch aren't too difficult. But cooking dinner is a bit different, since he is only allowed low-fat meats like chicken breast or turkey breast (and some fish, which we don't typically eat a lot of.) The thing is though, I cannot cook the chicken or turkey with the skin still on, since the fat from the skin still soaks into the breast. So when I cook a chicken, it has to be without the skin, and not drizzled in oil which I love to do. I thought originally that I could make a pasta casserole and just pick out the meat for Tyson, but he is not allowed to have anything that has been cooked in meat, margarine, butter, or oil. Tonight I am making a chicken fettuccine meal for the family, but will have to boil his chicken breast separately while I fry up our chicken with oil. And Tyson will have to have plain pasta, as the sauce has too much fat in it too. Since he is a typical toddler when it comes to eating, there are times when he doesn't like what we're eating so we serve him a slice of bread instead. So I am hoping he will be fine with plain pasta served as a finger-food, and boiled chicken breast. It is taking some experimenting, and it may mean I have to cook two separate meals at time, but we will figure it out. I bought some boneless skinless chicken breast when it was on sale at No Frills, and I'll boil up some extra and freeze it for those days when we have something like meatballs or ham, so we can use our chicken reserve for Tyson that night. Tyson can eat low-fat deli meats like turkey breast, so we bought some of that and he likes that as well.
The trouble isn't so much with the meals themselves, it's more the snacks. Quite often we serve fruit for a snack in the afternoons, so there we're fine. But we often do crackers and cheese too. There is only one kind of cracker that Tyson can have, and I have yet to find a fat-free cheese. (I found fat-free cheese slices, but not sure if he'll eat "plastic cheese.") I am finding out that a lot of the snack foods that Tyson CAN have, our family CAN'T have, because we follow the Feingold diet (no artificial flavours or colours.) Like licorice, marshmallows, ju-jubes, gummy worms, gummy bears, etc. When we weigh out the options, it looks like this holiday season there may be a few exceptions when it comes to following our Feingold diet. So people just might have to excuse the behaviour of our children for the next little while.
Also, there are NO cookies and only one type of cracker that Ty can have. So I tried some fat-free baking yesterday, and while I find the taste is compromised when substituting the butter/oil/eggs, the kids haven't complained. But at least I have a few varieties of cookies I can serve Tyson when his siblings would like that for a snack. So far the older ones have been great at lunch time about what they can/can't let Tyson see them eating on their bread. If they want peanut butter, cheese, chocolate spread, etc. they make their bread at the counter behind Tyson's back and he isn't any the wiser. So far :) Tyson can have jam and honey on his bread, but he actually quite often prefers it with nothing on it anyway. And he can have "Sunday soup" but we just take out his serving before adding the meatballs, and boil it on the stove right beside our pan of soup. So Tyson can still have his "loop and bum." (Soup and buns...one of his favorites, like a true Dutchman!)
As far as Tyson's JP care, it is going well. It is really quite easy to empty and drain, and I have to call Sick Kids with the volume amounts every morning, so they can keep track of when is a good time to pull the tube out. So far he is draining an average of about 130-150 mls per day, which is still way too much yet to consider pulling it on Thursday when we go for post-op clinic. So it looks like we most likely will be having his JP "hangin' around" at Christmas time. Family members, please excuse the sight of it, I don't think it's really that bad, but some kids might think it looks weird. Oh well, better than still being in the hospital!
I was also trained on how to do a dressing change, in case he needs it. They really wanted us to go to Sick Kids on Monday for them to do a dressing change there, but I was not about to let anyone spoil our plans to take Braden and Merrick to the TML game! So Mom and I did the dressing change together on Monday afternoon. It's not really the re-dressing part that's difficult, it was more the un-dressing (taking the existing dressing off.) The JP tube is covered with gauze, then wrapped in a circle around the tube insertion site, and covered with lots of gauze and tape to secure it in place, so that it can't accidentally get pulled out.
I was really concerned for a while about the possibility of Tyson being re-hospitalized over Christmas because the minimal fat diet still doesn't seem to be decreasing the amount of drainage. In the hospital, they give the minimal fat diet 6 days to kick in, and if it still doesn't decrease the draining, they make Tyson go NPO and feed him with TPN intravenously. (IV feeds, no eating or drinking allowed.) But when I talked to Kathleen (the nurse practitioner who got us the tickets) last night, she said they try very hard not to have kids in the hospital over the holidays, so they would probably skip the TPN stage and go straight to the steroids. I haven't done much research on the steroids yet, so I don't know what they are and how they affect Tyson, but I think they are supposed to minimize the draining so that rotten JP can come out. Judging by the drainage amounts for the last few days, it looks like we're headed in the direction of having Tyson on steroids. I can report more on that after Thursday's post-op appointment.
So Thursday's post-op appointment is going to be another busy day. The older 3 kids are going to my Mom's on Wednesday night to sleep over, because we need to leave here at 6am to be at Sick Kids by 8am. Brian is taking another day off to come with me, since it's going to be such a busy and involved day. There's chest x-rays to look at what kind of fluid is still building, blood work to check his INR level (to make sure the Warfarin is the right dose for Tyson's body,) ECG (checking in on the AV block, lower heart rate,) Echocardiogram (non-sedate, checking heart function), appointment with the nurse practitioner, and IF THE DRAINING SLOWS DOWN, then Tyson would need a bolus of morphine before the JP pull, so that would take about an hour or so too.
Last night, my Mom cared for Tyson (and Kenya) so that Brian and I could take Braden and Merrick to enjoy the Toronto Maple Leafs' game at the ACC. They lost the game, but it was great to experience TML tickets, box seats, free food and drinks, and the memories that go along with it all. The boys were thrilled when John Mitchell and Jonas Gustavsson came up to our box to sign their hockey cards for them. It was a pretty personal and emotional night for us, since we were given the tickets by Jonas Gustavsson himself, who donated the box seats and the food/drinks to Cardiac Kids. Gustavsson has a personal reason for doing so much for Cardiac Kids, and he wished Tyson well when we told him Ty's story. Thank-you Jonas Gustavsson and Cardiac Kids! If you want to see more pics of the evening, check out the Cardiac Kids facebook page, we hope to post some pics on there soon. (Once I get a chance...it's been busy here today and it's time for me to sign off and get going around here again.)
Thanks for checking in on us, we're doing quite well! We'll post another update on Thursday night, after the post-op appointment.
Blessings to you all,
Mel:)



Tyson had to wear a jersey too, even though he's not quite old enough to come along (this time)



Yep, life IS good :)



Posing with Jonas Gustavsson after the game. He kindly signed autographs and posed for pics. For more pics of our fantastic evening, you can go to my facebook profile :)


Day Ten WE'RE HOME!

"But I trust in your unfailing love;
my heart rejoices in your salvation.
I will sing the LORD’s praise,
for he has been good to me."
Psalm 13: 5, 6
Tyson and I are going HOME TODAY! The JP is still in place, and draining quite a lot. So there's no chance of the JP being pulled today or tomorrow, or even Sunday. So we might as well quit hanging around here and get home to enjoy the holiday season. Brian is working today and then coming by to pick us up. Then we'll be back at Sick Kids on Thursday for a clinic appointment, they will change the dressings around the JP. If the draining has stopped by then, they will pull the JP. If not, we will come back again the next week for dressing changes, etc. and continue on until the draining stops.
Usually they will only allow a patient to go home with a JP if they are within 90 minutes from the hospital. We are slightly outside that limit because of traffic. But the cardiologist who said "This boy needs to go home." is waving his hands at us, telling us to get outta here! LOL
I have to make this quick, since discharge day is always insanely busy. Meeting with pharmacist, thrombosis, NP for JP drainage instructions, booking new appts, and I have to go down to RMH yet to turn in my key.
So I am signing off now. Will write more at another time, if I get the chance yet tonight.
Please keep praying that the draining will stop soon :)
Mel:)
WE'RE HOME!
The BEST BEST BEST feeling in the world was watching my son snuggle down under the covers of his nice, warm bed, grinning from ear to ear beneath his soother. The tears were quite literally pouring outta my eyes watching him enjoy his own warm bed, and it was then that it finally truly sank in that my son has survived his third open-heart surgery!
THANK-YOU, LORD!

Day Nine Post-Fontan

"Be still before the LORD
and wait patiently before Him."
Psalm 37: 7

Yogi Bear and BooBoo came for a visit.



Tyson just LOVED them :)

Tyson on the left, hugging Boo Boo.
Conrad on the right, hugging Yogi Bear.


We also had a visit from Clutter the Clown.
As part of the "Clown therapy" program at Sick
Kids, which, up until today I thought was a joke :)
Tyson LOVED the toys she brought!


The Three Muskateers

All the same size :)

Tyson (2), Conrad (4), Parker (3 )

I can tell that today was a big cardiac surgery day. There are a few new families roaming the halls and all of the friends Tyson and I have made in the last week have been discharged and are gone home to make room for more patients. But not us, we're still here. Even two familes whose sons had surgery same day as Tyson both went home last week. But not us, we're still here.

Today was another happy day for Tyson, but I sure shed a lot of tears today. This morning we were given "false hope" that we'd be going home today. I wasn't totally surprised to hear that, since I've been keeping on eye of the drainage, and I knew that he drained so little yesterday that it was less than 50 mls. Dr. Benson, the cardiologist here on 4D saw Tyson running around in the halls yesterday chasing soccer balls and wacking things with his hockey stick, and he said to me, "This boy needs to go home."

This morning on rounds, the team said they wanted to do a set of chest x-rays and, as long as they looked good, they'd pull the last JP today and send us HOME today! Dr. Benson waved at me this morning after the nurse practitioner had given her report on Tyson and said "Good-bye!" I was pretty happy, but I knew that I shouldn't get my hopes up too too much, because anything can happen. But when you hear the word "home" on rounds, it's hard NOT to get my hopes up.

Anyway, chest x-ray revealed a small accumulation of fluid on the bottom of the right lung. The nurse practitioner (NP) estimated it was about 10 mls of fluid. Sometimes when one JP is pulled, the other one tends to start draining more because it starts doing the work of two or three drains. In order to get the last bit of fluid out, they put the JP on suction again (they just squeeze the rubber bulb flat so that as it re-inflates, it sucks the fluid out.) Once the bulb was squeezed, fluid immediately started pouring out. Like, more then the estimate 10 mls of fluid in his right lung. So for today this JP is over its "daily limit" and will not be pulled. Since their daily limits run on a 24 hour basis, the JP will need to go all day tomorrow (Friday, 12 am - 11:59 pm) with less than 50 mls of fluid. But at the rate it's going now, it won't be pulled tomorrow either. So we most likely will be going home with the JP in, maybe sometime this weekend.

In addition, we had some decisions to make today. Ronald Mc Donald House called with an available room for us! I was asking the charge nurse what she thought I should do, since we are potentially so close to going home anyway. She said, "By all means, take the room! This time of year it is so difficult to get in, and RMH is there so that families can be together, especially for the holidays!" She pretty much said we'd be stupid not to take the room. So I went down there this afternoon to fill out the paperwork. I won't be using the room tonight, but at least our family can be together for the weekend, and if things take a turn and Ty's stay is prolonged into the holidays, we can still all be together. If things went downhill and we gave up the opportunity to stay at RMH, we'd never ever get back in again. Even the people at RMH totally understood and said at this time of year, you don't say no to a room at RMH :)

We had to make another decision today. I hate making decisions when I'm not the medical professional. The NP really "feels" that Tyson should be on the minimal fat diet. This was not an "order" from the cardiologist, but a recommendation from the NP. She has been concerned about the amount of drainage right from day one, and also concerned with the high level of the triglycerides (fats) in the JP fluid right from day one. The higher the triglyceride content in the fluid, the more likely the fluid is to accumulate in the chest cavity, rather than distributing itself over the entire body like it's supposed to do, to be sweat out, or peed out. Erica has talked about the minimal fat diet to us before, and I know that in her heart she felt that it would be in Tyson's best interest to restrict his fat intake. But I've been resisting this option for a few days, because based on Tyson's numbers, he doesn't need to be "ordered" to go on the diet. If the triglyceride number is 1.1, the cardiologist orders a minimal fat diet. Tyson's level was 0.99. VERY close, very borderline. The NP has really been tearing her hair out with this, not WANTING us to have to recommend this, but really concerned about reaccumulation of fluid once the tube is pulled out. Reaccumulation of fluid can happen after the tube is pulled out, especially in children who've had large volumes of drainage like Tyson has. If reaccumulation happens, the fluid can aspirate into the lungs, Ty's sats would drop, and after some time he could become cyanotic (blue). Then we'd be back at Sick Kids, the JP tube would need to be re-inserted, there'd another lengthy hospital stay, and he'd be ordered to go on the minimal fat diet anyway.

There is no way of knowing IF any fluid will reaccumulate once the JP is pulled. So we could quite potentially pull the JP in a few days, continue on with Tyson's normal diet, and things could be totally fine.

But is it worth the risk?

I absolutely could not make that decision on my own. So I called Brian and bawled my eyes out to him about it. Maybe some of you sitting on the sidelines don't think it would that difficult of a decision to make. But a very over-tired Mom is ready to go home. I'm tired of the JP in, I'm tired of being woken up at 12 am for a stupid JP drain, I'm tired of nurses checking in on us every hour, I'm just so tired of being here. I skipped lunch today from talking to the pharamicist and others who "thought" we were going home. And Tyson is tired of being here. He needs to go home too.

Every ounce of my being does NOT want to have Tyson follow a minimal fat diet. He is a picky enough eater as it is, how is this going to work? At the same time, in the grand scheme of things, looking at how far God has brought Tyson, what's six weeks of managing Tyson's diet, allowing us the peace of mind that he won't get reaccumulation? Would I constantly over-analyze every little cough, thinking "Is the fluid reaccumulating?" That is no way to enjoy the holidays. So Brian and I came to the conclusion that an NP who follows her gut feelings rather than what "numbers" say is a GOOD nurse practitioner. It would be terrible if Tyson had a reaccumulation of fluid and we would totally regret not doing what we could to prevent it.

So. Decision. Made. Done. I would do anything for my son, especially considering all that God has allowed for him to be here with us today. God has granted us two years with him, despite his very messed up little heart. And as much as I love Sick Kids, I'm sick of being here and I don't want to come back because we pulled the tubes too soon and the fluid is reaccumulated. It means our other children are going to have to be very understanding that whenever they want chips or other high-fat snacks, they can't eat it in front of Tyson and may have to wait till he is napping. And I will have to adjust my cooking accordingly. I'm not sure how it will work to not let him have what we're having for dinner. Not sure how that will work, we'll see. Thankfully, Tyson loves bread. He's pretty picky when it comes to his fruits, but he will have to get used to it. No more peanut butter or chocolate spread on his bread. The diet is effective immediately, and so far Tyson has said nothing about the skim milk in his sippy cup. For dinner he had a piece of bread with nothing on it (!) and some apple sauce. He'll have to get his protein from fat-free yogurt and low-fat cheeses, because he can't have any meats. The dietician is coming tomorrow to go over everything with me.

I also had a visit with the pharmacist today about the warfarin. This is a pretty tricky drug and a lot of things can affect the INR level. We have to do weekly bloodwork to make sure the INR level is right. And anything can affect the INR level: changes in diet, colds/flus, vomiting, other medications. It's also imperative that Tyson NOT bang his head, or it can cause his brain to bleed. Great. How do you keep a 2 year old from banging his head? Especially Tyson's head? LOL We basically have to call Sick Kids anytime he has a hard bang to his head, and they will have to check him out. Bleeding in the brain can begin immediately after a fall, but the symptoms won't start till a few hours later. More tears when I heard this. (I'll tell ya, it was much easier when Tyson was on Enoxaparin injections, because he was way too young to bang his head on a coffee table or fall from a chair or couch.) It's all a bit overwhelming. And scary. But God has carried us through before, He will do it again.

Brian is coming to see me tomorrow night, we'll make decisions about our plans for the weekend. We would have to take a look at the drainage volume. If it is slowing down remarkably, we may wait here a few more days to pull the tube and then go home. Or we may be going home with the tube, and come back for JP removal once the fluid is down to under 50 mls per day.

For tonight, because it was such an emotional day and I am lacking in sleep, and because Tyson is stable and only still here because of his JPs, the nurse will be leaving us along ALL night! JP empty at 9:00pm, some vitals, some meds, and then letting us SLEEP! No hourly checks for sat levels, heart rate, etc. *aaaaahhhhhhh* Just what we need :)

Signing off,
Mel:)




















Day Eight Post-Fontan

"Surely he has done great things!
Do not be afraid, land of Judah;
be glad and rejoice.

Surely the LORD has done great things!
Do not be afraid, you wild animals,
for the pastures in the wilderness are becoming green.
The trees are bearing their fruit;
the fig tree and the vine yield their riches.

Be glad, people of Zion,
rejoice in the LORD your God,
for he has given you the autumn rains
because he is faithful.

He sends you abundant showers,
both autumn and spring rains, as before.
The threshing floors will be filled with grain;
the vats will overflow with new wine and oil.
I will repay you for the years the locusts have eaten—
the great locust and the young locust,
the other locusts and the locust swarm _
my great army that I sent among you.

You will have plenty to eat, until you are full,
and you will praise the name of the LORD your God,
who has worked wonders for you;
never again will my people be shamed.
Then you will know that I am in Israel,
that I am the LORD your God,
and that there is no other;
never again will my people be shamed."
Joel 2: 21-27

Two JP drains out, one more to go! I'd much rather have Brian be the one by Tyson's side when they pull out the chest tube, but since he wasn't here today, I had to stand at the bedside, stroking Ty's hand, wiping the tears, and kissing the forehead of an absolutely frantic, screaming toddler. I held his one hand (more like pinned his arm down,) one nurse held his other hand, anothe rnurse held his legs, and another nurse did the work. I warned them that they would need ear plugs for this procedure...We did give him morphine about an hour before the procedure, but it's only a drop in the bucket compared to the pain he experienced during that. Not an easy experience for me, but Tyson has been happier, and more active with one less tube. He played hockey in the hallway for a good part of the day. If all goes well, and the drainage volume continues to decrease, the last JP will be pulled out tomorrow or the next day. Then it's free sailing :)

Brian's parents came for another visit today. They enjoyed seeing Tyson getting back to normal, kicking a soccer ball around the playroom and riding through the halls on the riding toys. It's always so nice when they come, and nice that they are able to come so often too! Thankfully, Tyson was in a much happier mood than the last time they came.






We also had a surprise visit today that just totally made my day! Denver Komdeur, Tyson's fellow CanRef heart buddy, and his parents Mark and Susan came for a visit. Denver had his annual echo at Sick Kids this afternoon so they dropped in for a visit. I was so surprised and excited to see them :) Denver came bearing gifts, which also made Tyson's day. A Toronto Maple Leafs mini-stick and two balls! Denver was so good with Tyson too, keeping him busy while his Mom and I caught up with one another. They played hockey in the hallway, and even compared "zippers!" It was so refreshing to see them again :)



Denver and Tyson - heart buddies :)



Conrad and Tyson - they often meet together in the 4D playroom.
This was Tyson's attempt at saying "cheese." :)

Hopefully by tomorrow we'll have a good idea of when we'll be going home! Can you believe that? :D

Mel:)

Day Seven Post-Fontan

"I know that the LORD is great,
that our Lord is greater than all gods.
The LORD does whatever pleases him,
in the heavens and on the earth,
in the seas and all their depths."
Psalm 135: 5, 6


It is now one week since Tyson has had his third open-heart surgery. God has been so very faithful, and has blessed Tyson with good health so far. Despite the excessive JP drainage, a few days of lower O2 sats, and a slightly lower heart rate than normal, there have been very few complications. For this we are very thankful to our Almighty God and Father!

The text above also describes how great our God is, greater than any other god, but the LORD does what pleases Him. So in all things, we must remember that everything goes according to His plan and He is in control of all things. Even when we speak about a going home date, it is always "the LORD willing." We saw first-hand how "in control" God is also this past November 18, which was the first surgery date for Tyson. For whatever reason, God changed those plans at the very last moment, and so we remember Who is in control, and that even if we have no idea in which direction our lives are going, we need to hold on to God's promises and TRUST that His ways are higher than our ways.



As I mentioned yesterday, the chyl tests came back negative but because the other levels were on the border-line, there was still a possibility that we might have to follow-through with a low-fat diet to minimize the JP drainage. The amount of drainage in the past 24 hours has been significantly less than before. At one time the JPs were draining over 300mls per day. Yesterday's amount was down to just over 80 mls, and today it looks like they're draining even less! :) They would like to see JP totals of 4 ml per kilo per day. Tyson is 13.5 kilos (he has lost the kilo of weight in fluid retention he had gained after surgery.) That means that they would like to see less than 54 mls of drainage in one day before they decide to pull the chest tubes out. We're getting closer! Now the question is this: wait a few more days on 4D till the drainage is minimal enough to pull the tubes...OR...send us home with JPs only to come back in a day or two to have them pulled. They will probably just wait till tomorrow morning's JP numbers are totalled before making the call. It looks like I most likely will be missing out on Merrick's Christmas assembly on Thursday. But hey, Braden got over it two years ago when I missed his assembly; I'm hoping Merrick will forgive me for not being able to attend. His mom is feeling called to be with his younger brother this time, so his Grandma will be going instead :)



I am happy to report that at rounds this morning, the staff cardiologist shook his head and frowned when the Nurse Practitioner asked about putting Tyson on the low-fat diet. When putting it into perspective, it wouldn't be the worst thing in the world to have to follow a different diet, but Tyson is picky enough about what he eats without having to complicate matters further. Lately he has been eating a high fat diet consisting mostly of milk, milk, and more milk! Before surgery I had to bribe him to drink milk instead of juice, now he doesn't even want to touch the juice at all :) He is also eating toast, mini-go yogurts, fries, chicken nuggets, apple sauce, and cheese. He hasn't really been interested in too much else yet. Like a typical toddler, his likes and dislikes for foods go in spurts.



Tyson has been very happy again today. He has decided he doesn't like to settle to sleep for the night until about 1:30 am, so then he is grumpy in the mornings, needing a morning and an afternoon nap. Today I was not going to let that happen again, as I really would like to retire a little earlier than 1:30 am!! So I kept him super busy till 1:30pm, allowing for only ONE nap today, like normal. He slept until past 4:00pm, so that is more like normal.



The trouble with hospital stays, is that there are constant interruptions through the night for meds, vitals, JP drainage, etc. And we don't have an outside view from our window; it's the inside of the hospital atrium. So there is light beaming in from both the door and the window at all hours of the night. I finally taped up a blanket to the door's window last night so at least we don't have to see the lights from the hospital hallway. The med scheduling here is ridiculous. I understand that they want to empty the JPs at 12 am so that they have an accurate total for the 24 hour day. I understand the need for vitals every 6 hours for kids recovering from cardiac surgery. But do they honestly think that once we get home, I am waking Ty up at 1 am for Lasix? Lasix (diuretic) is supposed to be given every 8 hours. I guess no matter what time it's given, we'd be interrupting either his night time sleep or a nap during the day. BUT is it really necessary to do JP drainage at 12am, Lasix at 1am, and then vitals at 3am? They want to interrupt us three times in the night? PLUS their routine check of O2 sats and heart rate every hour? I don't think so! LOL



Every night I go over with the night nurse what the plan is: how can we combine a few things together? Usually we end up doing Lasix, vitals and JP drainage all at 12 am and then they are supposed to leave us alone for the night. But two nights ago they were concerned about Ty's sats so they were in and out checking him, all night long. Last night went better in that regard. Tyson was settled by 9pm but for some odd reason was laying awake when I went back in the room to retire myself at 10:30! Then we both laid awake for a few hours. And when I know the nurse will be in at 12 am for meds/vitals/JPs, I don't settle myself till after 12 am. Now I've talked the nurse practitioner into changing the order for vitals to every 12 hours, since he is stable :)



I would LOVE to create a position at Sick Kids called the "sleep and meds coordinator," one who would go over with the Moms their baby's routines and when would be the best time to give this med or that med, when to do vitals, when to empty JPs. *sigh* Can't wait to get home and sleep in my own bed and get back into our own routines! :)



Over all, Tyson is happy today. He's talkative and laughable like his normal self, as long as he's on pain meds. He hasn't been on morphine now for a couple of days, just Advil and Tylenol. He has gotten pretty attached to his soother and blanket though...but we'll deal with that a little later once he's well.



Tyson is now able to run all around 4D, with his "big red balls" (sorry) hanging from his pants. LOL I must admit, it does look funny having his JPs clipped to his pants as he wanders around. But on the cardiac floor, it's all been seen and done before so no one looks strangely at him. He also enjoys just walking the halls hand-in-hand with me, playing on the ride-on toys, and spending time in the 4D playroom. Yesterday he had his hockey stick out and was chasing the ball down the halls, but him running down the halls was making me nervous. (Being on the blood thinners, I am nervous about head injuries too, which we all know he is prone to banging his head.) This afternoon we had the pleasure of playing without the portable sats monitor, so I didn't have to follow him around with the leash like I'm walking a little puppy dog. Two year olds are busy and I was having to chase after him with his "leash" so he wouldn't get tangled in the sats monitor's cord. Round and round and round the Thomas the Train table....and around some more! Now I won't have to do that, I can just sit in a chair and watch him play :)



Even though I am now here with Tyson by myself, and my scheduled company for the past two days has cancelled due to bad weather, it is MUCH easier to pass the time with Tyson mobile and able to play in the play room. With his other surgeries, he was still too young for that type of thing, so we mostly just stayed in his room and watched endless hours of tv. And in past surgeries, he also spent more time in CCU as opposed to 4D. The CCU rooms are darker and more depressing, so the days go by soooo slowly. On 4D, when I go to the playroom there are always other parents to meet or chat with. So it's going much better in that way. And I'm actually able to keep up with what day it is. (Speaking of which, HAPPY ANNIVERSARY MOM AND DAD!)



The other night while Tyson laid awake for a while and Brian and I tossed and turned, he started scratching at his incision and also managed to pull off the bandaids around where the chest tubes are inserted. He wounds are starting to heal, so things are getting itchy. Since his ECG leads are now off, it's easier to get a normal shirt on him. The shirts are tighter around the chest than a hospital gown, which was giving him easy access to scratch and damage the wounds. Since the bandaids were replaced yesterday and he's now wearing normal pajamas, the temptation isn't there as much anymore.



Wow, I started off thinking there wasn't much news to report, and it has turned out to be a pretty long blog post. LOL Well, what did you really expect from me? :)



Take care everyone, and thanks again for your prayers. Please keep praying that the JPS stop draining, so we can go home without them. And soon :) It is very realistic to be home for Christmas - the LORD willing. Please also pray for continued health for Tyson, and that he is able to understand and deal with his heart condition in the future.



Mel:)




Day Six Post-Fontan

The roller coaster ride continues. Yesterday we were soaring high with the news that the JP drainage was chyl negative and we could be going home just as soon as they found the right Coumadin dose for Tyson.
Today during doctor's rounds, I hounded the cardiologists a bit for answers as to why Tyson's sats are still lower than "normal" post-Fontan. I am concerned that because the Coles procedure didn't go 100% as planned, this may affect his long-term energy levels and overall health once we're home. Understandably, I am concerned about the lower than normal O2 sats. So I asked them about his hemoglobin levels: does he need a transfusion? What about the albumin levels: losing all that blood in the JPs would decrease the protein in his blood. Will an albumin transfusion improve his sats? Are his small pulmonary veins contributing to the low sats? While I was drilling the cardiologists with my 21 questions, I inadvertently found out that the chyl test done yesterday was not completed properly and they would have to send the drainage away again today for more accurate results. Apparently when deciding whether or not to treat a patient for chylothorax draining, there are three levels that need to be tested and considered: triglycerides, lymphocytes, and chylothorax microns. For some reason, they didn't test for the chyothorax micron levels, so it is not 100% confirmed that Tyson is chylothorax negative. Because there is still a fair amount of drainage, even after taking off the suction effect of the JP drains, they want to re-test all three levels to be sure they can send us home with the drains.

I am very disappointed with this news. But we're hoping and praying that the results will still confirm that Tyson is chylothorax negative.

Tyson's albumin levels in the blood are a little low, which is from a lot of blood draining into the tubes. So this morning they put an IV line in again, and they are giving him a blood transfusion as soon as he wakes up from his nap. I am wondering if this would help his sats, since they've been dipping into the mid 70s again the past 24 hours. But the cardiologist this morning says his hemoglobin is fine so that wouldn't make a difference.


I am sitting here scratching my brain as to why his sats would be lowering. His sats now are lower than they were pre-Fontan! To be sure, they won't be as high because of the fenestration which relieves some of the pressure, so there is a lot of blood passing through the fenestration. But immediately out of surgery, his sats were 92, then 85ish in Step-Down, then 80s for the next 2 days, and now the baseline is about 75-80. Since they took the suction effect off the JPs, there is automatically less draining into the JPs. This means that there is a danger that the fluid could seep into his lungs. So the nurses are constantly listening to his lungs to see if there is still good air entry. If they hear any fluid at all in there, that means his body is not draining the fluids appropriately and the Lasix is not doing its job.


So needless to say, with all the checking and re-checking his breathing to make sure he is not aspirating, do you think we got a tonne of sleep last night? Nope! Tyson was nicely settled by 9:15 am and at 10:30pm when the nurse came to empty his JPs, do vitals, give meds, etc, Tyson woke up and was wide awake until about 1:30am. He totally thought it was morning time, asking to watch tv! Once he settled again, the resident/fellow cardiologist was called in and checked his breathing a few times between 1:30 and 5am...because his sats were in the mid 70s. All that walking in and out of our room kept Brian and I both awake, and cause Tyson to sleep very restlessly all night. He basically slept from 9:15-10:30 and then again from 1:30 - 5am. Of course he was very irritable this morning. So he had a nap and was slightly happier at lunch time. Now he is sleeping soundly again, and once he's awake he will receive his transfusion.

Brian left this afternoon to go back to work for tomorrow. I am sure the older ones will be happy to see him, and thanks Mom and Dad for giving them some stability at this difficult time. Give them extra squeezes from me...and I hope they are feeling better soon!

I hope this blog post makes sense. I am working on limited sleep these days and I have fuzzy brain again :) I hope to post more underneath this blog post, later tonight when we find out more about the chylothorax results.

Please keep praying!

Mel:)

5:00pm

The nurse practitioner just came in to inform me of the test results. The chylothorax microns have come back negative. That is news we were praying for. HOWEVER, the other two levels are on the border line. Unfortunately in the medical field, not everything is black and white. I thought if it's chyl negative, it's chyl negative. But the other levels (triglycerides and lymphocytes) test for fat levels in the drainage, and if these levels are too high, they treat it with a low-fat diet anyway. Tyson's levels are right on the borderline. ARGH! Are you kidding me?

So now what? The Nurse Practitioner is not going to do any dietary changes yet at this time because there has been significantly less draining since they took the JPs off suction and let them drain naturally. The total drainage from both JPs a few days ago was over 300 mls and now it is below 200 mls total. This is a bonus which means that there MAY be an end of the draining soon. Please keep praying that the draining will STOP.

The staff cardiologist might disagree with the NP and opt for the low-fat diet anyway, so we'll wait till morning to see what he thinks. Either way, we would know in a few days whether or not we're here for the long-haul or whether they'll let us go home for Christmas.

Quite honestly, when we were preparing ourselves for this surgery, we had prepared ourselves for a long stay. We even celebrated our Santa Claus early just in case we didn't make it home in time. We've saved one big gift for each of our kids to open after Tyson returns home, that gives them something to look forward to later in December too. So being here over Christmas wouldn't totally surprise or disappoint us, since we were mentally preparing for that anyway. But going home earlier than expected is always a blessing!

This afternoon Tyson is much happier than he was this morning. He had a decent nap this afternoon, and is now confined to the bed for a few hours until the transfusion is complete. (He's happily watching tv while I type up this update from our own room...thanks to the laptop I am able to borrow from Avertex! Thanks Jason and Grant for arranging this for us :) I can tell in Tyson's eyes that he is still exhausted from the lack of sleep last night, but hopefully he has a better sleep tonight. The Nurse Practitioner said they won't have to interrupt his night with vitals every 6 hours tonight since he is doing well. The sats are back up to 83-84 this afternoon. It is beyond me why the sats are fluctuating so much! I don't think anyone really has answers for that one.

Brian and I are both so encouraged by the prayers going up from all over the world. It brings tears to my eyes to think that there are people everywhere praying for Tyson and for us; friends and family in British Columbia, Manitoba, the United States, Australia, Holland, and England. And many of these people we've never even met! God is so good, all the time! We are so thankful for a wonderful communion of saints and for the people who consider themselves "prayer warriors." So, in case we haven't said it enough yet, thank-you for your prayers! THEY ARE WORKING!

Mel:)

Day Five Post-Fontan

"You will keep in perfect peace him whose mind is steadfast,

because He trusts in You.

Trust in the LORD forever,

for the LORD, the LORD, is the Rock eternal."

Isaiah 26:3,4

Tyson had another great day today! He is being weaned off the morphine slowly, because it was causing him to go into a very deep sleep, which was lowering his O2 sats. That is also why his sats were so low during the sedate echo, he was in a very deep sleep. So today he has been off the morphine now since 9:30 am and he is still in a pretty good mood. This afternoon he was walking all around the fourth floor without holding onto our hands. “No! Me do!” He kept saying to me. He can’t walk too fast yet, but that’s mostly because we have to follow him with his “leash”, the O2 sats probe and portable monitor. The ECG leads have come off today too, which means they're not concerned with his heart rate. So now he’s left with only the sats monitor and the two chest tubes.

We also received some GOOD news and some GREAT news today J The good news is that the drainage from his JPs came back chylothorax negative. Wohoo! No low fat diet for him! We heard from the Nurse Practitioner Jenny that if it WAS chylo postiive, he would be put on a stringent low-fat diet for 6 days to try to slow down the draining. If after 6 days there was no improvement in the drainage, he would be taken completely off all food and put on TPN, through intravenous!! I am SO glad the chylo came back negative!

We also received some GREAT news. And that is: once we’ve been trained on how to empty the JP drains ourselves, Tyson is allowed to come home with the chest tubes still in! It will be very different having him running around the house with two JPs hanging off his pants, (we clip the JPs to his pants so they don't pull on his chest) but to recuperate at home and spend Christmas at home as a family will be AWESOME! I couldn’t be happier right now J Having JPs to worry about will definitely be different for us, but I’ve done the Ng tube, portagen feeds, pumping breastmilk for 6 weeks, Enoxaparin injections, and 7 different medications…we can do the Jps too J

Tomorrow Tyson is having blood work to determine his INR level, and we might have to wait a few days to get the Coumadin dose correct for him. And they are also going to check his triglycerides and albumin. If his albumin level is low from there being so much blood loss from the JPs, he may need a blood transfusion before going home. This would also bring his sats up higher because he would have fresh, oxygenated blood. I am not entirely sure when exactly we can go home, but at least it is in the conceivably near future. I would LOVE to be able to attend Merrick’s Christmas assembly on Thursday but that might be pushing it. I’m hoping someone can videotape it for me, please?

Jay and Mel came for a visit today and brought us some apple pie and some other nice treats :) We also are allowed to use a spare laptop from Avertex for the duration of our stay! This will be so nice, to be able to be on the Internet without having to leave Tyson's room.

We’ll keep you posted with any news about our return trip home.

Brian and MelJ

Day Four Post-Fontan

"Yet this I call to mind
and therefore I have hope:
Because of the LORD’s great love we are not consumed,
for his compassions never fail.
They are new every morning;
great is your faithfulness.
I say to myself, “The LORD is my portion;
therefore I will wait for him.”
Lamentations 3: 21-24


Lounging in his crib, watching hockey with his Dad




Now he's in a big-boy bed, but who gave him the remote?
And here I thought once Brian goes back to work it would
be MY turn for the remote....



Up and walking around a bit....he's getting there....baby steps:)

Tyson had a very good day today. We have been able to stay on top of the pain medication so that makes a huge difference! He's also eating more; not quite as much as normal but he's certainly getting there. Because he's eating better, his strength is also coming back. He was able to stand by himself on the weigh scale today holding on to the hand rails. He also walked the length of the hall holding onto Brian's and my hands. Definitely making progress!

Tyson's spirits were really good today too. It probably helped that he was able to spend some time with his older siblings. Mom and Dad Spanninga came by for a visit and took Braden, Merrick, and Kenya with them. The older ones spent some time at the PlayPark and then the afternoon at Marnie's Lounge; a favorite for all of them. Even though Tyson couldn't leave the ward to join them for those fun times, he enjoyed a nice long nap this afternoon instead :)

Tyson is still on a fair amount of medication. His puffers have been started up again since his chest has been rattly-sounding, but he's so far only needed to Ventolin mask (nebulizer) once yesterday. They have ordered it for "as needed" but today he was ok, only needed the blue and orange puffers.

He's also on Coumadin (warfarin) now, which is a blood-thinner that he will need for the next few months, until his fenestration is closed in the cath lab. We crush this pill and give it to him with his yogurt at dinner time. Since warfarin can be hard on the tummy, we had to wait till he was eating enough at dinner time. So today was his first time taking it and it went down no problem at all. (Blood thinners are much easier when children are old enough to take it with food...no more Enoxaparin injections!)

He also takes Lactulose, a stool softener, because his belly is pretty distended and probably caused him some discomfort. Morphine and other pain meds can constipate, but his bowels started moving again today, after a nice glycerin suppository. I gotta tell ya, I should get an automatic RN degree just from all the things I have learned and have done in the past two years :)

Tyson has also been started on another antibiotic Cefprozil, because yesterday his incision was oozing and it appears infected. This is an oral antibiotic, not through an IV like last time; so that's not going to keep him in the hospital any longer. What's keeping him here right now are two things:

1) His JP drainage. He is draining a LOT. Yesterday and today he drained over 300 ml of fluid from the drains. That is over a cup of fluid coming from somewhere inside his chest every day. Most Fontan kids will drain a great deal. One nurse tells us it's not the amount of fluid that drains which determines whether it's chylothorax but the colour. A milky, white colour is chylothorax. Chylothorax would mean a longer stay here on 4D, and a low-fat diet for 4-6 weeks until the lymph node heals. Chylothorax is leaking lympathic fluid caused by a nick in one of the lymph nodes during surgery, that is worsened by high-fat diets. The leaking will stop in 4-6 weeks once the diet is managed. So far Tyson's drainage has been red and translucent, until today it looked a little cloudier than normal :( Another nurse tells us that if his JPs are draining that much every day, it's most likely chylothorax. Well, they test for chylothorax on Day Five post-op, and tomorrow is Day Five. So hopefully by tomorrow we will know more...although tomorrow is Sunday so I'm not sure if we'll get results then.

Basically, we absolutely cannot go home until those drains stop. And only God knows when that will be. If they slow down soon and stop in the next few days, we could be home as early as next weekend. But if they continue, we are stuck here for the long-haul. One little boy we met in November who had his Fontan in September, was here for 8 weeks because there was so much drainage. So I am getting my mind geared up for a lengthy stay, and if I'm wrong...extra blessings!

2) The other thing prolonging his stay is the Coumadin. Since tonight was his first time taking it, he will need to have his INR levels checked by blood work in two days. Then if the amount of Coumadin needs to be adjusted, it would be another two days before they test again. They keep adjusting until they get the level right, then send us home (as long as the JPs are done draining.) Once we are home, we would need to make weekly appointments at a lab to have blood work done to double-check his INR levels. Then we'd just call in the results to Sick Kids and they would tell us if the Coumadin dose is correct or if it needs adjusting.


All those uncertainties aside, the progress Tyson has made today makes my heart just soar! I was so happy to see him bearing weight on his legs and beginning to walk. He didn't enjoy it too much, but if we stopped doing things just because he cried, he'd never eat anything or take meds or get up out of bed at all. He is happier lounging around watching hockey. *sigh* ANOTHER hockey fanatic in the family! LOL He was honestly mad at me and Brian today because there wasn't a channel that was showing a hockey game. Now he is back in his element though, watching the Leaf game with his Dad while I get away from his room for a bit and use the computer.

We even saw a few smiles from Ty today :) He's getting there folks!

In your prayers tonight and for the next day or two, please pray that the chylothorax tests come back negative and that the JP drainage will stop soon.

Thanks so much for your prayers :)

Brian and Mel:)