Pics in CCU

Here are links to pictures of Drew in the hospital Critical Care Unit.

• Drew 1



• Drew 2



• Mommy kissing Drew

He is feeling so much better. The nurse who visits our house said she will come back for a visit in a few weeks just to check up on him and then she will close his case. He can now sit up by himself!! He really enjoys his rice and oatmeal cereal and all the new veges and fruit that we have been trying.

Posting from home!!

I am sooo glad to have my family at home together. Drew is in great spirits and he was so happy to see Myah.

Thanks soooo much to our wonderful family and friends for the fantastic surprise when we got home. How wonderful to come home to a fridge and freezer full of food a heartfelt card and balloons. We couldn't have asked for more supportive people while we were going through this.

I feel so fortunate to be home with our precious baby boy. Many other families are not as lucky to be coming home 1 week after surgery. Being at Sick Kids hospital make me realize how important family is and how lucky we are to have a healthy girl and now a healthy boy!!

WERE COMING HOME TODAY

Drew has just been discharged!!! My dad is on his way to Toronto to pick us up. I can hardly believe just one week after surgery and all the stress and set backs that we are getting out of this place.

After all the tubes were removed yesterday Drew has been feeling so much better. He looks wonderful and we are leaving without so much as a band-aid on him. He has one stitch where his chest tube was and we have to see our doc next week to get that removed.

He has been full of smiles today and started happily breast-feeding again at his 1 am feeding. I am so thrilled the last 24 hours has been such a relief but I was still shocked when the doc told us this morning that we would be going home. I can't wait for him to sleep in his own crib with no monitors beeping.

I am looking forward to being with Myah again and getting back to our routine. I may sleep on the floor in Drew's room tonight but I will try not to worry too much!!

Thanks for all your support and be sure to come and visit us at home soon!!

Lots of news

Sorry for taking so long to update but I had no internet access on the weekend.

Drew moved to out of the step down unit into his own private room yesterday afternoon. Jason and I are now completely in charge of Drew's care except for every few hours when a nurse comes in to check his vitals. He had a long night and had lots of trouble sleeping (so I did too, whew) he was still so uncomfortable. We kept him on Tylenol with codiene and that seemed to help but he still is not himself. One by one his lines came out he just had the chest drain, pacemaker wires and nose feeding tube left. We got the go ahead to breastfeed since he would not talk the bottle of expressed milk and he has decided to stage a feeding strike. We continued to try the breast which he refused and we managed to get him to take some milk from the bottle but most of the milk was fed via feeding tube. I could tell he was having trouble swallowing but not sucking and I think the tube in his throat was bothering him.

At 2pm they finally took out his chest tubes, we were asked to leave the room for a while so they could do what they needed to do. I insisted they take the feeding tube out with the knowledge that they would put it back in by 8pm if he did not eat. When we got back to the room all his tubes were out and he was sleeping as peacefully as I have seen him all week. It was such a nice feeling.

After a few attempts to breastfed with no luck we tried the bottle again and after a few minutes Drew sucked down an entire bottle. Hooray, I am so proud of my little guy and glad I insisted they take out the tube. I knew he could swallow properly with it in.

If he contiues to eat well, we will be discharged tomorrow or early the next day!!!! I know Drew will LOVE to be home and do very well when he is finally out of this strange place. NOw if we could just get a little smile out of him I will be thrilled. I think that is it for now.

Moved to Unit

Drew is now upstairs on the 4th floor cardiac unit. He is doing wonderful and will in his own room by tomorrow. All his stats are great and he is breathing with very little additional oxygen through nose prongs.

The are up-ing his feedings through a tube and getting tylenol for pain. He is much more alert and aware but no smiles yet.

I finally got to hold him today!!! I was nervous but it felt wonderful to have him in my arms.

Myah is coming to visit us today and I can't wait to see her!!! Thanks to Dwayne and Bernice for bringing her to Toronto!!!

Breathing tube is OUT!!!

Whew, what a relief. They were going to take it out this morning but delayed it again because he wasn't awake enough an dhis lungs were still a bit wet.

Aroung 3:30 they took it out and he did so much better. He is now breathing on his own with a little oxygen tent around his head. The are still monitoring him very closely to make sure he breathes deeply enough. The also took out his cathetar. So we are moving inthe right direction with less tubes for poor Drew

He has been moved to a new room where the babies go right before moving up to the cardiac unit. He can now cry but it is very hoarse sounding. I love to hear him cry it has been so long.

The library here is closing gotta go.

Drew is getting stronger

Drew had a good night. All his stats were very good and the are cutting back on his morphine. He woke up and looked at both Jason and I. He seemed confused but regocnized us. He seemed to really like following the Winnie the Pooh balloon that we hung on his bed.

The plan is to take out his breathing tube by noon today. He is inhaling and exhaling on his own now and the irritation in his throat seemd much better. Please pray that all goes well. I will let you know as soon as I can how things went.

One more day on breathing tube

They have decided to wait until tomorrow to remove the breathing tube. The docs don't want a repeat of what happened yesterday. They have put Drew on a drug that helps to reduce swelling and want him to be on it for 24 hours before they attempt to get the tube out of his throat. He is still being assisted but is initiating all the breaths on his own. His breathing is a bit shallow and he is skipping a few breathes once in a while which makes his machines all beep.

He will have to be in critical care for at least 2 more days which is twice as long as we expected him to be there. His blood pressure, oxygenation, blood work and heart rate all look good.

Myah is coming to visit on the weekend and I hope we don't have to cancel because he isn't allowed visitors in critical care. Please send him your strong breathing prayers.

Still on the breathing tube

Yesterday was a busy day, we had trouble getting in to see him in the morning because he didn't do so well when they tried to take his tube out. Drew was breathing well on his own with the tube in but when they took it out his cried for 10 seconds tried to breathe then jsut stopped breathing. They tried to bag him and give him a chance to breathe on his own but he just wouldn't so they had to re-tube him :( They think there is some swelling in his throat or he had a muscle spasm which blocked his breathing. I was so upset that it didn't go as planned, he shocked the respitory tech and the docs and nurses who thought the extubation was going to be very smooth. I spent most of the day beside Drew's bed just holding his hand or stroking his forehead.

His stats are all good and he is breathing with little assistance today so they will try to take the tube out again late afternoon. He is receiving breastmilk through a tube in his nose so at least he isn't hungry. They have cut back on his morphine so he will be alert when they do the extubation later. He opens his eyes every few hours and looks at us witha drunk look in his eyes. I am sure he is very confused as to what has happened ot him. He really hates all those tubes.

I will try to update later today.

Update

Drew is doing so good this morning. He keeps waking up and they have to sedate him so he doesn't pull out his tubes. He is breathing on his own and they will take out the breathing tube shortly. If he does well without the breathing tube they will start tube feeding him.

The saddest thing is that they had to tie down his arms because he keeps pulling at everything and flailing around. We can't touch him or talk to him right now because he keeps waking up when he hears us :( They need to let him sleep longer but they want to cut back on his sedation. He will want to eat when he wakes up and he won't understand that Momy can't feed him or pick him up.

We went to the hotel last night and I surprised myself buy sleeping through the entire night, I was exhausted. The other kids in his room are not doing as well as Drew so we are aften asked to leave the room while they do procedures. I look forward to him being moved to his own room so we can spend more time with him. He is getting amazing care, the docs and nurses are wonderful.

Just saw Drew

Drew is looking ok, I expected it to be worse. He is covered in tubes and wires. He has a tube in each nostril and in his mouth, a chest tube, a central line in his neck and a couple of IV's. He is getting all sorts of medications. I can see the incision in his chest, it is big. He is getting blood and platelets as he lost a lot of blood during the surgery.

The doc is pleased with how he is doing, his temp is up just a bit and his heart rate is a bit fast but both are normal after surgery. I have just been standing by the bed rubbing his head.

Both Jason and I are being strong. We have had some tears but the worst is behind us. I will update again tomorrow.

Surgery is done

We spoke to the surgeon and the surgery went well! Drew is recovering and we can go see him in about 1/2 an hour.

His didn't have a complete Tetrology of Fallot as we thought but the repair was similar. The valve repair went very well and the surgeon was able to save the connection to the pulmunary artery which we hoping he could. The surgeon expects a great outcome.

I am prepared for lots of wires and tubes but I can't wait to see him!!!!!

I will update again when I can. Thanks for all your thoughts and prayers they are working!!!!!!!

Be sure to comment on this site if you want to contact me a I won't have access to my email.

Sitting and waiting....

I just came down to the hospital library to post an update. Drew went in for surgery just beofre 8am and should be coming out aroun 1pm. They don't give you any updates during the surgery so we sit and wait. It is hard to pass the time as every hour creeps slowly by.

Drew was just a happy sweet little guy last night and this morning as usual. I fed him just before 4am which was the last time he was allowed to eat. He didn't seemed bothered by not having breakfast. We gave him a bath in special soap and the got him preped for surgery.

The hardest part was handing him over the the OR nurse. I gave Drew to her and he smiled and looked over her shoulder at us as he went off through the OR doors. As soon as he was out of sight I started to bawl. This is the longest I have ever been away from him. I miss my Drew and I'm saying my prayers that all is going well in surgery.

Keep thinking of us and sending those prayers. Thanks.

I am sooo nervous!!!! We have started packing for our 10 days in Toronto for Drew's open heart surgery. Time is flying this week and I am praying a lot and hoping that everything will go well. He has a bit of a sniffle which I hope is just teething not a cold starting, they will postpone his surgery if he is sick.

I am worried about his taking care of him after surgery. He will have restrictions like no tummy time for 3 weeks, no picking up under the arms for 6 weeks and no exersaucer, front carrier or jolly jumper for 12 weeks. He is such a heavy boy it will be hard to cradle hold him for this long.
Drew is now 5 months old which is hard to believe. We started him on rice cereal and now he takes oatmeal too, he is such a good eater. He get so excited when he sees me preparing his food and opens wide for every bite.

I had Drew's portraits taken this week and they are so adorable. They did one where he held a heart pillow and peeked over top of it, too sweet.

Here is a recent picture, he look sooo much like Myah!!

Pre-Op trip to Sick Kids

Last night we went to Toronto to spend the night at a hotel. My Mom and Dad drove us which saved us so much stress. They took us out to dinner at Red Lobster and watched Drew for a 1/2 hour while we went for a swim, it was so nice of them.

Our appointments started at 7:30 this morning so we got up bright and early. First we went for blood work, they take way to much blood for such a tiny person if you ask me! He really isn't that tiny they weighed him in at 17 lbs even. Everyone we saw commented on how big and chubby he was! Then we were off for a chest x-ray. I held him on a bicycle type seat with his hands over his head while the tech put this plastic tube tightly around him. Needless to say this was not an enjoyable 5 minutes for either of us he looked (and I'm sure felt) so uncomfortable. He was crying, I held it together somehow.

We went up to the cardiac ward for our "learning day". We met with a wonderful nurse Natalie who would be our guide for the day. She weighed him, got his height, took his blood pressure and oxygenation. Asked us a bunch of questions about his medical history and family history. She took us to meet with Dr. Golding his cardiologist, he was so warm and caring. He explained the surgery to us and told us more details about Drew's condition.

Then we met the cardiac surgery fellow and the surgeon that would be working on Drew. As a shook Dr. Chris Caladrone's hand I thought "My God, these are the hands that are going to fix my son's heart". He looks like a regular guy, I thought he might have a halo around his head or something ;) I asked him how many surgeries he has performed and he said well over 1000, 250-300 similar to Drew's condition so I think he is in great hands. Of course he had to tells us about all the possible complications, very scary, I pray Drew's surgery goes very well. He said the surgery will take 4 -6 hours from sedation to going to recovery with about 2 hours on the heart.

Then we met a doctor doing a research study that he wanted Drew to participate in. It is monitoring kidney function using diaretics (sp?) after surgery. We agreed to participate pending the results of his kidney test last week. Then they sent us to have a quick bite to eat.

Next the nurse showed us a Powerpoint presentation on the infant caridac surgery preparation and after care. She didn't know how to use the program and it took a lot for me not to jump in with a lesson LOL. It was very informative and included pictures of babies after surgery to prepare us for how many tubes and wires that we will see on Drew after. It was scary to see but I feel better prepared so I'm glad they showed them to us. He will have a breathing tube and be completely sedated for at least 24 hours after surgery. They expect him to be ready to go home 7 - 10 days after surgery.

Finally we headed down to the 2nd floor where the surgery will take place. We saw the waiting area, critical care and the pre-op waiting room. We met with anestesia (sp?) the doc was very nice. He showed the doors where we say good-bye :( :( and assured us that he would be asleep within minutes of leaving our arms and not even an IV would be put in until Drew was asleep. I am glad he won't be feeling all the pokes. I am allowed to nurse him until 4am for his 7:30 surgery which gives me great relief, I was worried it would be after midnight and we'd have a very cranky boy.

It was a long day we arrived at 7:30 and started to head for home about 3pm. It was a lot of people to meet and information to take in but I feel much more clear about everything. Very worried but informed.

Kidney testing

Friday Drew was off to the children's hospital in London again to get his kidneys tested. We finally made it to the appointment after having to cancel it twice because Myah and then Drew had the chicken pox.

First Drew had to have an IV put in. The could not find a vein in his arm to try so they decided to put it on his bald little head. The first attempt failed :( They moved to the other side where the veins were now much more visible thanks to Drew's screaming fit. He did not like the IV at all. I nursed him and he settled down and fell asleep. I carried him while Jason push his IV pole along side us.

We headed down to nuclear medicine and laid Drew on a special table and he was injected with a radioactive medicine that the tech took out of a lead lined case. (That was kinda scary seeing that go into our baby) Drew didn't seem to mind at all he was still sleeping. The tech put a lead lined blanket on him, gave him a medicine called Lasik to make him pee more and started the test. All the kidney pictures were taken from a camera in the table below him. He woke up after about 1/2 an hour and we kept him happy with toys and songs until the test was done, it took 1 hour. We then had to wait for 2 hours and come back for 5 more minutes of imaging to see how much the kidney drained.

The tech couldn't tell us much except that the right kidney was slow to drain but we already knew that. I told them the test results must be back asap to prepare for his heart surgery but they said they take a week. I sure they will hurry along when our cardiologist calls them. It is very important that the surgery team knows what is happening with his kidney function.

I really want to get these results to see what the problem is so we can decide what to do to correct it.