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

Off to Toronto!

Hi Everyone,
So we have decided to head into Toronto tomorrow (Monday). We need to be at Sick Kids by 6am on Tuesday so we figured this would be a little less stressful and perhaps we can try to enjoy our night together before we hop on the coaster ride. We will be at the super 8 motel the first 3 nights...although I don't know if Paul and I will actually stay the night of surgery or the night after. We will have to see how we feel about leaving the hospital. It really is quite close though. My mom and Jodi Lin will be with us and definetly staying in the hotel. After those first three nights we will have to see what happens. We hope to get into Ronald McDonald house and have Jodi Lin with us...but we will have to see how long the wait is there.
Thank you everyone for your thoughts and prayers! I also wanted to thank everyone who donated Money to help us out or bought us a gift card. Thank you for all the support everyone is giving us. I feel quite confident that we will not have the added financial stress that a hospital stay can involve and we can concentrate on being there for our little boy. Thank you so much everyone!
Jenaia
P.S. I will try to update online as soon as possible, as for phone calls we will have to see how I feel and how much time I have.

Pre-op went great!

Okay sorry it took me awhile to update the blog. Many of you already know that Dominic's pre-op went well. We stopped feeding Dominic the night before we went in just incase he was going to be sedated for the echo. Sick Kids told us that they would try not to...but to have him ready if we needed to sedate him. We bought Dominic a new Spiderman Cartoon (his first one) to bring to the hospital with us and got him excited to watch it during the echo. We left the house at about 5:30 that morning and stopped at Walmart to buy the DVD. We arrived at Sick Kids about 15 minutes late at a quarter to 8. First thing on the agenda was bloodwork. I tried to tell Dominic that he would be getting his blood taken before hand to prepare him...but I wasn't sure what he got out of it. When we sat in the chair he was sad and scared but held out his arm when they asked. He cried but sat still and let them to their job. They gave him two whole sheets of stickers afterwards for being a good boy.

Next was chest x-ray. He complained only a little but when I showed him the tube restraint and told him we would have to use that if he couldn't hold still....he did as he was asked with just a little wimpering. Next was the echo. They wanted to sedate him but I told them he had been good all day and he was excited to watch his movie. Unfortunatly 4A and 4B don't have DVD players. The nurse called down to 4D to see if they could have a volunteer bring one over...and thankfully they did. So Dominic layed with Daddy and watched Spiderman while the tech did the Echo. It took more then an hour as they weren't getting the pictures they wanted (not Dominic's fault)...something to do with the collaterals they coiled off during the cath. The amazing thing here is that in all this time Dominic never asked for anything to eat or drink. Dominic normally asks for food the minute he wakes up and continues to ask all day until he goes back down. He never asked once! We did feed him some arrowroot cookies and apple juice at about 10:30 when we saw that he did not need to be sedated.

After the echo we went downstairs to the second floor for a duplex scan. This is an ultrasound on his main arteries in his legs. They like to do this because of his age and the fact that he has had two previous surgeries and caths. They wanted to make sure that the vessels are not to damaged I guess. This took about an 45 minutes to an hour...way to long. We then got to pick up our lunch and head back upstairs. The next 3 or 4 hours were spent in that room talking to everyone about the upcoming surgery. The nurse, the surgical fellow, the surgeon (nice to see him again), the physiotherapist (she was Dominic's favourite as she brought bubbles. We also got to talk with Svetzlauna (sp?) , she does a lot of the research studies. She hadn't seen Dominic since he was about 14 months old. She couldn't believe how big he had gotten. There are always lots of studies going on with these single ventricle kids. We signed up for one and are looking into another. Anyway we left the hospital just before 5 and had almost a three hour ride home because of the traffic. Dominic feel asleep before we even left the parking garage and slept the whole way home. I can't blame him...it was such a long day and he was so good!

Anyway thanks for everyones thoughts and prayers...we could tell you were praying for us as the day could not have gone much better. So now we prepare for next week...lets hope and pray it goes just as well.

Jenaia

Pre-op is next Monday

Please keep Dominic in your prayers on Monday June 9th as he goes in for his pre-op appointment. It will be a very busy day. It will start out with a blood test, then a chest x-ray and then we go upstairs for an echo, ecg and duplex scan. They will be sedating Dominic for the echo and hopefully that will make the day a little easier, but it will also make it a long day. We will be talking to a lot of professionals, who will be preparing us for the big day. Please pray that Dominic stays healthy and pre-op goes as scheduled.

Here is a poem by Stephanie Husted (a mom with a child who has similar defects to Dominic) that describes quite well where we are at right now awaiting the Fontan:

I've got Pre-fontan Syndrome...
And I can't concentrate...
I say off the wall things...
And I just can't think straight. I keep losing things...
(Yes...that includes my mind)
I've grown tired of hearing...
"Oh he'll be just fine".

I've got Pre-fontan syndrome...
My temper is weary...
One day I am happy...
The next day quite teary...
My husband says dear...
Tell me what to expect...
Will I come home to my wife?
Or come home to a wreck?

I have Pre-fontan Syndrome...
now I can't sleep at night...
And I'd do ANYTHING...
Just to make him "alright".

I have Pre-fontan Syndrome...
(Think I'll get that tatoo)
Then I might have the courage...
to face surgery too...

I have Pre-fontan Syndrome...
And I'll have the cure when...
I hand my son over...
and face "that day" again.

I have Pre-fontan Syndrome...
(not sure there's a pill)
To make me feel better...
(when it's over I will)

I have Pre-fontan synrome...
And with hope...
I do plea That someday this will seem...
Just a bad memory.