Update

The echo went really well. Another echo in 2-3 months to check on everything. She also had the suture (from chest tube) removed and the "rash" is all cleared up.

Update

Thanks, mom for alerting me to the fact that I should do another update. We got home safely yesterday.
Chloe is doing great. She has a kind of rash on her chest around the incision. I took her into the hospital yesterday morning before we left Edmonton to make sure it wasn't infected. It isn't but was just a bit red. They gave me some hydrocortisone cream to put on the rashy parts but said to avoid putting it on the scar. Hopefully it will NOT get infected. It's hard because she gets itchy. We tried Benadryl but it wasnt effective.

Tomorrow is the follow-up appointment for an echo. That will be in Regina. They will probably remove the suture from the chest tube at that appointment.

And We're Outta Here!

We got discharged around noon today. Spent the afternoon and evening at the Ronald McDonald House.
I will be calling Hope Air to try to arrange our flight home tomorrow morning. Unfortunately they are closed on the weekend, so I am hoping it's not too late to get a flight tomorrow. Don't want to spent any more days than I have to away from home.

The latest

So the news from rounds this morning is:
- they are taking her off contact precautions; the stool sample showed nothing (even though it only can test for certain things). But she hasn't thrown up of had diarrhea in 48 hours.
- the stopped the aldactazide (to make her pee) because she was drinking and peeing lots and had lost some weight. And because the chest x-ray was clear
- she did much better with chewable Tylenol and hasn't needed any morphine in over 24 hours.
- we have a follow-up echo in Regina on Thursday.
- they removed the bandages and the incision looks good
- should (almost definitely) get out of here tomorrow and may get a pass for a few hours today. Hoping to make it to fern's baptism!
- they saline locked the IV since she hasn't needed anything. They had kept it running just to keep the vein open in case.

Good news!! Yay!

Happier today

Today was a better day. She does not like taking the liquid meds. So they should write out the order for chewable Tylenol. She has been eating and drinking more -and keeping it down!

They sent a stool sample but no news yet on that. The x-rays, blood work and echoes look good though. Hopefully we will be out this weekend.

She feels much better but can't leave the room because she is on contact precautions until the sample results come back. Boring.

Thursday

Chloe threw up a couple of times. We aren't sure if the morphine is upsetting her tummy. She hasn't felt like eating much today. She has been drinking but not as much as before. They took out the one IV because she threw up and it got on the IV.
They are going to give her some IV fluids until she's drinking more. And also something called tordol (similar to ibuprofen) that can be given by IV. Hope this gets under control. They also gave her a dose of zofran to try to settle her tummy.

The x-ray looked great this morning. We took her on a walk to "the beach" which is a play area. She's pretty sleepy and sore since she threw up her Tylenol.

To be safe they are putting her on contact precautions so we have to wear gowns.

More progress

Chloe got her JP's (side chest tubes) out this morning. As well as the pacing wires. She stayed fairly still, even though she cried and screamed- and made me feel like the worst mom ever. But it's over now and so the only thing that has to come off her body now is those bandages. Oh, and the IV's out of her arms.

She had a good night last night for Paul. When I got there around 7:30 she was still sleeping, but by 8am they had to do blood work. And now that the ART line is out that meant a poke. Not s great thing to wake up to. She was pretty good for it though.

Dr ruttlage (one of the cardiologists) said we may even be able to get out of the hospital this weekend. She said we may want to stay in Edmonton for a day or two. But she is very happy with her.

We are on the cardiac ward!

We got to go upstairs to the cardiac ward tonight at 6pm. Chloe even got up and walked to the bathroom with us helping her a bit. She is of course a bit shaky but she is sure a strong little girl. Can't believe how fast she is progressing.

Paul is staying the night with her tonight and he will probably go home Friday. I will stay with her tomorrow and until we go home. Hooray!

Wednesday

Chloe had to get some blood this morning because her hemoglobin was just a tiny bit lower than they wanted. She had a great night. They now have the central line out of her neck and the ART line out of her arm. Right now she just has her IV's saline locked, so she is not hooked up to anything! And her hands are now free. She is much more content now. We are going upstairs at some point today. Right now we are waiting for the room upstairs to be cleaned. She is able to take all her meds orally now. And she is happy to have the catheter out and diaper off. And now she can wear PJ's!
So far, so good. At this rate we'll actually get out of here way faster than we ever have before!!

Chest tube

They took her chest tube out around 4pm today. Apparently she watched the surgeon pull it out and hardly flinched! He was pretty impressed. So was I- we left the room for it so we were out of the way. i don't think I would have been watching even if we were there.

She was able to eat some Popsicles, a few bites of a sandwich, a slice of cucumber and some diced peaches.

She is doing really well. The nipride is off. So is the morphine. They can give her a bolus if she needs something. They have been giving her zofran (like strong gravol- all too familiar to me from when hailey had her chemo) so she won't get an upset stomach again. She had thrown up a couple times in the night.

She is breathing better too. She had been a bit coarse from the intubation for the MRI and surgery.

If they had a bed available upstairs she could probably get out of the ICU. They are hoping for tomorrow. They can take out the arterial line and central line before she goes to 4C

After rounds

They took out her catheter after rounds. They also cut her nipride in half. They will have to make sure her blood pressure doesn't get too high. But so far, so good.

They gave her apple juice and she wants more. Surprise, surprise. In awhile she can try food.

They want to take the medial steinal chest tube out today but leave the JP's in (the side chest tubes). They also want to take out the central line in her neck. They use that to measure her central venous pressure.

After they take out the chest tube they will wean the morphine.

Early morning Tuesday

Chloe is doing well. She had an x-ray early in the morning. Her blood gasses look good. They have her on small bit of morphine and Tylenol every 6 hours. They have her oxygen prongs off now- which Chloe is relieved about. They were making her nose feel itchy.

They still have nipride up to 4 (think that's max) but should get that down soon.

She got her LA (left atrial) line out this morning. One step closer to upstairs!

She keeps asking for snacks -and she's getting more and more specific in what she wants. It's kind of comical. They finally let her have some ice chips, but only a few spoonfuls at a time. She always wants MORE but that seems to appease her a bit anyway.

Rounds will come around in the next hour so I'll know more then.

Extubation!

So she was pretty annoyed and hard to keep settled. They stopped her sedation and lowered her morphine. Then took the breathing tube out. That's way faster than any other time we've done this. She is happier now.

Surgery is done

So the surgery is done. We got to see her around 1:30pm.  Dr Rebeyka came out to talk to us.  The surgery went very well.  He was able to put in a fairly large conduit this time so this surgery should last longer (cross your fingers).  He put in a size 20mm conduit and he said for someone my size he'd probably only have to use a 22mm so this should last her awhile and she may only have to do this surgery once more! 

He was able to repair the valve so there is minimal leaking.  He said she is still too small for an adult sized valve, but if the valve starts to leak more down the road they will have to replace it.  If they can wait until she's big enough for an adult valve (around 5 years?) then it can last "forever" (as long as it doesn't clot or get infected).  They are also working on studies with the new valves they have to use only aspirin to prevent clotting instead of warfarin/coumamin (warfarin can have adverse side effects when taken for a long time).

She did not need a transfusion in the OR (just blood on the bypass machine).

They also widened her pulmonary artery farther from the heart where it branches off because it was slightly narrowed. All in all they are happy with how it turned out.

They have her on morphine for pain, midazolam (sedative and it is kind of a mild amnesiac so she probably won't remember the first day or two in the PICU), nipride (to control the blood pressure/pressures inside her heart), milrinone (helps to relax heart and dilate the blood vessels so her heart doesn't have to work so hard), and occasional bolusses of morphine or propol (i think that's the name) to keep her settled.

She has already tried at least twice to pull out the breathing tube or turned her head and fought against everything.  It's kind of scary -she's so strong.  But they seem to have her settled more now.  I thought I was ready for this after 3 times going through it, but she is so big now that she is fighting it and i worry she is going to get hurt. 

They hope to have her extubated by tomorrow, but we will see.  I will update more later.  Hopefully I didn't forget anything. 

Surgery time!

They just wheeled her in to the OR. Paul went in with her just until she falls asleep. Should be done around 12 or 1pm. We will keep you posted.

Fun times

We have had lots of fun the past 3 days with NO HOSPITALS!

We went to the park at the school across the street (on many occasions), played inside and outside at the House, rode the bus to the mall to buy something special at the Disney store, went to Fern's birthday party, and went to church.

There is a play house outside at the House that is just like a miniature house. There are working lights and a second storey and everything. Chloe loves it.

Today before church we got to do a craft with some of the girls at the house. It was "foil art" -they found a kit in the craft room. Chloe liked it (and I'll admit, I probably enjoyed it even more than she did)!

Paul arrived this evening and got to play fairies with Chloe for a bit. Then we had to give Chloe another bath (that's two today) in preparation for the surgery.

We have to be at the hospital bright and early at 6am. Which means I should be in bed right now... But after what happened with the MRI I'm determined to wake her up for a snack before she has to stop eating. I'm just worried that if I go to bed now I won't be able to wake up again to feed her.

We have a surgery time

Just got the call. We are the first case Monday morning. Yay! Only downside is we have to be at the hospital at 6am for 7:20 surgery time. We will play hard until then. Have a great weekend!

Back at Ronald McDonald House

The MRI and echo went well. We stayed upstairs on one of the wards until 4:20pm. Then we got to come back to the house. Chloe had 2 and a half juice boxes, 4 small Popsicles, 4 crackers, one cookie and 2 pieces of cheese at the hospital. And when we got back to the house she says she's still hungry. Poor girl. Haha.

Sept 6th

Chloe's MRI was supposed to happen at 9am. She had to fast from midnight on. So we woke up and by the time we left the House she was already hungry.

We got here and kept waiting. Then they said there was an in patient that needed to be done first so it probably wouldn't be until 10:30. Which stinks. So we were going to go for a walk. But Chloe was grouchy and tired so I had to carry her often and there really aren't a lot of places you can go in the hospital that don't have food -the thing she can't have. After awhile of throwing pennies in the fountain at the Healing Gardens we went back. The nurses brought out some coloring pages and we watched TV and tried to ignore our stomachs. Yes, I was fasting too because if I ate in front of her that would just be cruel.

We finally got in at noon. The patient before her was an NICU baby and there were complications. So not their fault we were late, but it's hard to sit there and keep telling her she can't eat.

They are doing a 3D echo while she's sedated to get a better view of the valve. I guess the MRI was to look more at the graft and location as I had originally thought. But they neglected to tell me about the echo. Hoping to be done in there around 2pm and then we will stay for a few hours.

Here are some pictures.

Pre-Admission Clinic (PAC)

Today we had the Pre-Admission Clinic (PAC).  We had to be at the hospital by 7am (yikes!).  So at 6:15am I had to drag Chloe out of bed to eat and catch the cab.  She was not impressed in the least.

She had the full work up and vitals and all that.  Then we had a chest x-ray and blood work done.  She was NOT happy about the poke, but she was brave.  They put cream on her arm to kind of numb it first.  We met with physio, surgeon, social worker, fellow/resident, etc.  Then took a snack break.  Chloe said she was "bored" (but I think mostly she was tired and hungry).  Then we had to go upstairs for EKG and echo.  She was really patient through all of it.  Nanny Moore sent her a little present to open at the hospital to cheer her up.  She opened a crown today and loved it.  So did all the nurses -everyone was calling her Princess Chloe and she thought she'd died and gone to Heaven. 

So far the plan is we come to the Mazankowski Heart Center (right next to the Stollery) tomorrow at 9am for the MRI.  They will be sedating her and probably put a small breathing tube it just for the procedure.  It should take 1-2 hours and she should wake up fairly quickly.  After that we should be good to go after a few hours of observation.  This MRI is just to get a really good look at the valve in her heart.  Dr Rebeyka (surgeon) says that replacing the conduit(graft) will be basically the same as the previous surgery.  He will choose the largest size he can for her size so hopefully it will last her longer this time.  He told us the valve is leaking (which we knew).  He is going to try to repair the valve so he needs a really good look at it (MRI) before surgery.  If it cannot be repaired he may have to replace it.  They don't like to do that with young children because then she would have to be on a certain type of blood thinner (Warfarin) which can have not so pleasant side effects in a small percentage of patients -and they don't like to give it to children, especially not over extended periods of time. 

Physio said the most important things are going to be to get her up and moving to make sure her lungs stay clear and good.  Of course, that won't be in the PICU (it will wait til the pediatric ward).  After surgery it will be most important to remember no pushing, pulling, lifting more than an few pounds.  Chloe may have a hard time grasping the concept of no rough-housing, no monkey bars, no climbing, etc.  haha. 

We should know surgery time by Friday afternoon.  I'm hoping for first case so it's easier for her to fast. 

Then we ate lunch and saw the anesthetist.  The Child Life workers were pretty busy, so we skipped that visit.  We (FINALLY) got to go back to the "Donald House" as Chloe calls it.  And we ran into Jenn -one of my past managers from when I was working at Old Fashion Foods!  Crazy.  They have been here since end of May for her son.  I have also met one family from Estevan who are hopefully going home tomorrow, and one family who is from Moose Jaw!  Small world. 

Had fun talking via Face Time with Carter, Hailey, and Paul.  Chloe was so tired from the long day that she crashed as soon as we got upstairs to our room.  We went grocery shopping earlier and she almost fell asleep in the cart -which wouldn't have been good since we had to then walk back to the house.  I ended up giving her a piggy back ride while I carried groceries for part of the walk -while it was spitting rain.  Fun.  Haha.