I guess I am not much of a blogger....I will try harder!

Sorry for the delay in updates! I think most people who are checking have other ways of staying updated on Dominic anyway. Dominic is doing great, besides the frequent blood draws still for his INR levels (because of blood thinners). He has even potty trained since we got home...infact still in that 6 week recovery period. we had to lift him by his legs to put him on the toilet (lol). He has done great though and is even trained through the night despite the fact that he takes water to bed. He does still have the odd accident as a result of waiting to long but only during the day. He is yet to wet the bed (knock on wood).

We have all been sick off and on for the last week, but we seem to all be getting better. I honestly think Dominic had it the best out of all 4 of us. How does that work? Luckily he takes after his sister and has one heck of an immune system despite his half a heart.

So Tuesday we start homeschooling as well as our new diet. I have decided to go Gluten free and dairy free and bring Dominic along with me. I am going to be more cautious of what Jodi Lin is eating as well but I don't think I will be quite as strict with her. I don't believe she has an issue so much with dairy and gluten as with additives and preservatives. I think that in the long run this will be healthy for all of us. Pray for us though as this is a lot to take on all at once....along with the homeschooling.

I can't believe I am actually going to do it. Ever since Jodi Lin was old enough for JK, I always felt that I needed the break. Now as grade 1 draws near I know I don't want her gone all day everyday. I want to be the one who leads her and teaches her. Jodi Lin needs some more time with me. Dominic has taken so much of my attention in the last few years that I know she feels left out. Of course Dominic is still going to get my attention but now I will be spending so much quality time with my little princess as well. I am really looking forward to it and I believe she is too. Dominic will be doing some school as well....as much as he can take. He does seem to like being included and likes to work in workbooks.

Good news about Dominic is that I was able to set up some testing to look further into his lack of speech and figure out what maybe going on. I have been getting frusterated with having no explanation to why he is so behind in that way....(besides surgeries). I know that surgeries can delay them....but Dominic has not really spent that much time in the hospital. I am more concerned about the surgeries/bypass/ventilator causing actual damage that is make speech much more difficult for him. Basically we are looking into whether what Dominic is hearing is getting to his brain correctly. Now Dominic can understand and can hear but he seems to have a more difficult time processing what he hears and an even harder time relaying it back to you. He continues in speech twice a week and will soon be seeing OT as well. I haven't quite figured out what I am going to do with Jodi Lin during these time...but hopefully it will get figured out soon. Dominic's communication is coming along though and we are seeing even more of his character coming out. We are encouraged to teach him more signs though as he is very hard to comprehend....specially for someone that does not live with him.

The heart picnic was last weekend and we all had a blast. Thank you everyone who came and Joanna so much for your help. We had food provided by Maple Lodge Farms and payed for by Cardiac Kids. Thank you to both of them. Maple Lodge Farms even brought along a surprise....their nascar race car. The kids all loved it...it was very cool. I will have to post some pics later, I need to do some editing first.

I will keep you all updated on the testing and results! I am considering starting another blog (that I may actually use) all about how the diet and homeschooling are going. I will post a link if I go ahead with this.

Thanks for checking in!

Jenaia

Here is another pic of Dominic from Canada day....only 2 weeks post op. My little Spiderman!

We are Home!

We still need to get his coumadin (blood thinner) levels right but we can do that as an outpatient at McMaster. We will be back to Sick Kids sometime next week for post-op. So I will be looking for all who are going to be there on that day. Now here comes the job of keeping Dominic safe from hurting himself. He can not be picked up under his arms or pulled by his arms for 6 weeks and is suppose to avoid any blow to the chest for 3 months. We also have to be more careful now as he is on the blood thinners.

Dominic is happy to be home although yesterday he didn't want to go home....he wanted to stay at the hospital. He ate like 3 bowls of cereal for breakfast, so that seems to be back to normal. He is still not drinking a lot though, but seems to be hydrated enough. Can't believe the Fontan is behind us!

Thanks for all your support and thoughts and prayers. It truly helped us get through this hard time. Please keep praying for the other heart kids, Wyatt and Patrick as well as Cole and Max who is having his Fontan today.

Thank you,

Jenaia

Update for June 23/08

I am sorry I have not updated. It has been hard to get to the computers...specially on the weekend. Dominic moved to his own room on Thursday night. The same day he moved upstairs. He has been doing well. He just came off of oxygen yesterday. He was needing it for night time. He is still draining out of one tube, but it is really decreasing. For those heart moms out there....he has tested negative for Kyle(or whatever it's called). Right now we are waiting for the draining to stop and for the docs to figure out the right dose of coumadin(blood thinners) that he needs. Dominic is not eating or drinking well...which concerns me but the doctors are not making a big deal about it. He has only drank like 3 hundred and so many cc's today so far and it is almost 8pm. Yesterday and Saturday he hit his minimum of 700 cc's. In order to get him to take anything we really have to push him. Including chocolate milk. Anyway we are doing very good though considering. He is getting up everyday and playing in the play room for hours. He is off of the monitors now, only has the chest tube.

Up and About today

June 19/08 Dominic is doing well he moved up to stepdown today just after lunch and very soon will be moving to his own room....only 2 days post op. He is miserable...but we can all understand that. He is starting to get okay at taking his pain meds, hopefully he is understanding they help. He does seem to be in a lot of pain. His sats are still low and he is relying on oxygen and draining quite a bit from two of his chest tubes. He is still doing extremely well though.
June 20/08 Dominic was moved to his own room last night and I have been able to stay with him in a parent bed. He walked down to the playroom today and coloured and played for two hours. He was able to eat 2 and a half chicken nuggets and had one of his draining tubes removed. They are a little concerned that he is not drinking enough fluids though. He is still receiving oxygen but not much. He is doing amazingly well.

Doing Well!

I am sorry I haven't been able to update this page in some rooms in the hospital. But when we got to the hospital this morning Dominic was extubated it happened at 4 am. He was doing well and number are not too bad.

Quote from Dominic's nurse:"
He is recovering really well...no let me re-word that He is recovering extremely well!" He is drinking lots and eating freezies and jello. We have tried some solid food but he refused to eat it. He got rid of his IV in his hand (Atrial Line), the NG tube and the catheter. He is beginning to act more like himself(not the happy part though)...which is making things a little hard. He still needs the oxygen...but he keeps getting mad and pulling out the nose prongs, so they are trying him with just the tube blowing at his face. He seems to be okay with that but his O2 sats are only sitting in the low seventies although without the O2 he was in the sixties. We would like him in the 90s although the 80's is okay....that is where he was before surgery. They should go up though. They aren't too concerned about this yet as he still has a lot of fluid that he needs to get rid of. He is coughing really well...which is good. He is also blowing bubbles. Mostly he is watching a lot of movies and sleeping. Just tonight when I went into see him I got to hold him for a bit. It was difficult with all the lines and neither of us were that comfortable. He is quite miserable now and in pain but he doesn't want to take his meds. Please pray for him to be calm and take his meds if he needs them. We should definetly be upstairs tomorrow, apparently he is ready. Thanks for checking in and for all your thoughts and prayers. Please pray for a couple of other heart babies for me too. Cole goes in for surgery tomorrow morning. Wyatt has been in the ICU for quite awhile and having a rough time. And Patrick...he had his fontan yesterday too...he was first case but is having a really hard time. They are talking about taking what they did out..but that would mean he would probably be listed for a transplant.
Thank you

Jenaia

Keep Praying!

Paul stayed with Dominic late last night and when he left they didn't seem to think he would be extubated by morning anymore. His Sats are low and they think he may have fluid in his lungs. Please pray that this gets sorted out soon. His blood pressure is also low and has been since surgery...they were starting to get a little more concern last night as it had not yet gone up. They may already have this figured out as we haven't seen him yet this morning. We are heading there soon!

Thanks for the continued prayers and support!

Waiting......

Hi Everyone,
We were held off for a bit, because they didn't know whether there was a bed in CCU or not. Dominic went in at 12:50 this afternoon. He was very doped up when he went in. They gave him a med that made him drunklike...he could hardly hold his head up and he thought it was hilarious. We all had a lot of fun watching him as he goofed around just before going in. My mom videotaped a little bit of it...so I will post it later. So he went into the OR very calm which kept me calm. He kept the mood good with his funny reaction to the med. They are allowing about 5 and a half hours for the surgery. I will try and update again tonight. Thank you everyone for all the messages of support and all your prayers. So far so good!

Jenaia