Post-op Day Day 5

Another good day. Rachel is definitely well on her way to recovering = she is wearing Mama out! The first doctor we saw today said that he needed to discuss Rachel’s chest x-ray with the other doc, but he thought that she might get her two chest tubes out today and possibly go home tomorrow. He shouldn’t have gotten my hopes up. The second doc came in later and said that they would take the tubes out tomorrow morning and she could go home on Tuesday. Still good news though!

I talked to Tommy and my mom and told them that I don’t see any need for anyone to stay here at night but that it would be nice to have some relief during the day. So Tommy brought the boys for a visit this afternoon. Mom is coming tomorrow.

Rachel went on several walks today. And she discovered a bicycle. Here are photos of her riding the bike while Tommy and the boys were here.

Here you can see all of her equipment we have to carry with us–it’s much less than yesterday though.

This is the first time she’s ever ridden a bike. Titus has one this size with training wheels, but I don’t think she’s ever ridden it because we don’t have a good place to ride. She has been asking for a bike for months; only she calls it a “motorcycle”. “I want a motorcycle,” she says whenever she sees a bicycle.  I think Santa Claus might have to bring her one.

Today when we asked her if she wants a bike she said, “I want a PRINCESS bike.”

I enjoyed getting to see my boys. And Rachel felt good enough to play with them some although she was rather quiet the first little bit they were here. I get the feeling that she doesn’t like having to go back to sharing attention with them. I think she ended up having fun though. Eli and I made a Target run and enjoyed having some time together. He’s such a cool guy! I LOVE 13! I enjoy the baby and toddler years so much, and elementary age is fun. But so far 13 is my favorite. When Eli and I left, Tommy and Rachel were playing paper dolls. I’ll upload that photo later.

Good Day

Rachel and I spent the day playing paper dolls, playing Polly Pocket, coloring,  practicing writing letters, watching tv, and napping. We took two walks in the hall. The first one she asked to walk around. The second one she asked if she could ride in the wagon. But we made her walk. Her side where the newest chest tube is has been hurting some, but the pain goes away with Tylenol. She has been awake most of the day except for about a 45 minute nap which means she has been wearing me out. Things are definitely getting back to normal. She was able to get off of oxygen today, and she was unhooked from the pacemaker. Doctor said she will most likely get rid of a chest tube tomorrow. YEAH! The new chest tube has slowed down in the amount of drainage, so I’m hoping maybe it will come out the next day. She is quickly getting back to her normal eating habits–eating non-stop all day. We’re watching The Sound of Music right now which we both love. Oh, the joys of having a girl! I finally have someone in the house who appreciates The Sound of Music.

Wish I could post pics from today. Unfortunately I don’t have my camera cord, and Tommy took his iphone with him.

Long Afternoon

Everything went well, but it was a long afternoon. They carried Rachel to CICU around 2:30pm. The doctor had to do the same procedure on another little boy first. So Rachel and I just hung out and watched tv for a while. She was tired after being awake since mid-morning, but she was afraid that I was going to leave her. So I asked the nurse where I would go to wait while they were doing the procedure. She sat Rachel up and showed her the little room down the hall where I would be waiting while she was asleep. So Rachel finally took a nap. I was able to stay with Rachel until the sleepy medicine knocked her out–which was about 20 seconds after they gave it to her. They started the procedure at 4:30 and were finished at 5. She was already waking up some when they came to get me at 5. She was still very groggy though. She slept off and on until we left CICU at 6:30.

They took out one of her chest tubes that had stopped draining, but they put one in her left side to drain the fluid next to her lung. So she still has two chest tubes. They drained off 10 ounces of fluid immediately after putting the tube in.

Her side has been hurting some, but they gave her morphine for that. She has been nauseous again too, sipping on water and ice chips and throwing up some of that. She’s pretty pitiful again, but I’m hoping that she’ll bounce back tomorrow. Today she kept saying, “I don’t like going to the hospital.”

I still keep marveling at her pink fingers and toes! She loves to have her finger and toenails painted. Tommy told her that he thought she should only wear clear nail polish from now on since she has had the most expensive nail job ever.

Starting To Perk Up

Granny and the brothers came for a visit yesterday afternoon. They couldn’t believe how quiet and still Rachel was. Granny said, “I don’t think I’ve ever seen her this quiet before.” She did perk up a little bit laughing and throwing stuffed animals at Dad, Caleb, and Titus. Then we made her get in a wagon to go show the boys around the floor. She was not happy about that, but we needed to get her sitting up some. She was a wagon full with her chest tube containers and oxygen tank (she’s still on oxygen due to the pneumothorax). She was pitiful in the wagon and kept trying to slide down where she could lay down. We rode around a few minutes. After we put her back in bed she slept for a couple of hours. She walked to the bathroom yesterday afternoon.

Here she is pouting in the wagon because we made her go for a ride. Can’t upload photos from today, but she looks much happier.

I enjoyed some time with the boys. I took them down to eat in the food court, and we walked around outside some. Tommy took the boys home around 7pm. Caleb was sad when it was time to go.

Mom stayed with me last night. We had a good, restful night. We did have to get Rachel up to pee at 11pm because they were going to have to put her catheter back in if she didn’t go by 11:30pm.

Yesterday Rachel could have popsicles, Jello, and Sprite, but she didn’t want very much. This shows how bad she was feeling. At home she pretty much eats non-stop and asks for popsicles all day long. She kept asking for a hamburger, but I told her that she had to show them that she could eat popsicles and jello before they would let her have anything else. She was having some problems with nausea. In fact, she has complained more about her stomach hurting than her chest incision.

This morning I told her that she could have a popsicle for breakfast, but she didn’t want one. She did want some water and ice chips as soon as she woke up. She drank half a small cup of water and a few spoonfuls of ice chips, but then she threw it all up. The nurse gave her some medicine for nausea. She went back to sleep for a few hours. Since she woke up she has been eating and drinking constantly. She drank some water and ate ice chips. Then she started eating crackers and just about inhaled 5 of them. Then I asked if she could have some graham snacks from the snack bag my friend Brenda packed for us. She ate all of those, asked for more, and ate a small pack of shortbread cookies. She’s also talking more and becoming more demanding. Starting to be a more like her old self.

A doctor and nurse practitioner came by about 10:30am. They said that her chest x-ray this morning showed that the pneumothorax had filled with fluid. He said that this wasn’t good but is expected with this surgery. They tend to have problems with fluid because of the changes of pressure due to the drastic change in circulation. The plan is to do an ultrasound to make sure it’s fluid there and not just some trick of the x-ray. Then they will take her to CICU to sedate her and drain it. She will also likely get one of her two remaining chest tubes out today. The doctor said that this is pretty typical of kids who have the Fontan surgery. They look great and are progressing great, but the fluid build-up keeps them in the hospital. So we will likely be hanging out here a while longer.

Doctor came by at 11am to do ultrasound. There is a pocket of fluid in her chest cavity, so she has to stop eating because they will put her to sleep in CICU this afternoon about 2:30 to drain it. This doctor also said that this is typical with this surgery as her circulation adjusts to the new way things are hooked-up inside. She will come back to the room after they are done.

She’s not too happy about not being able to eat since she had just started feeling like eating. We’re watching movies and playing with paperdolls. She’s been awake a lot more today.

We’re In a Room!

Rachel had another good night. She was sleeping when we went to see her last night before leaving. She didn’t even wake up when we tried to talk to her. She kind of acted like she was mad at us during our visit before. She wouldn’t talk to us and was just kind of pouty. That’s understandable.

This morning when we arrived she was sitting in a chair, but she was crying because she didn’t want to take her medicine (Tylenol). She is great about taking her medicine usually, but whenever she fills bad she fights it even spitting it out. They are just giving her Tylenol instead of morphine now. I got her to take it, and then got to hold her for awhile.

During the night they had weaned her off of most of her meds that were helping her heart. She was also off of the pacemaker. They did decide to put the pacemaker back on because her heart rate has dropped down a couple of times. The pacemaker is not doing anything. It’s just set to kick in if her heart rate drops too low, just a precaution. The doctor feels like this will take care of itself and should improve the more she starts moving around. Her pneumothorax is the same, but again the doctor feels like this will take care of itself when she starts moving around more. That’s our job–get her sitting up and walking around some. Her Granny is on her way here and is bringing Rachel’s brothers with her, so they should help with that some.

They took out three of her five chest tubes this morning and unhooked some more tubes and IVs. AND we moved to a room just after lunch! We convinced her to walk from the hall to her bed because she needs to start moving around more. She did it, but she wasn’t happy about it. She’s napping right now, but we’re going to try to get her to sit up some after she rests.

We have been talking to the boys every night. Last night it was close to bedtime when we called. Caleb sounded like he was worn completely out. He started crying and saying that he missed us. My mom was already planning to come to see us today, so I told Caleb that he could come over her to visit with Granny and that Dad was probably coming home today. Then I talked to Titus who was spending the night with Granny last night and told him that he could come visit too if he wanted to. He immediately said, “I want to come!” So Mom’s on her way with all three of the boys. The plan is for Tommy to head home tonight. Mom may stay here with me. I really don’t think we’ll have too hard of a time as well as Rachel has been doing. We’ll see. Keep the prayers coming.

Still Doing Good

Rachel has mostly slept today. We’ve been able to go and sit with her for an hour at a time. But she seems to rest better when we aren’t there. When we are there, she’s afraid to fall asleep because she’s afraid we will leave her. We keep reassuring her that we are not leaving her. We are just waiting in another room so that she can rest and the nurses and doctors can do their jobs.

We had a couple of smiles today and then some laughs on our last visit. She kept kicking her covers off, but she doesn’t have any clothes on. We kept trying to get her to cover up, but she kept kicking it off. She thought it was a funny game. We saw a glimpse of her old self for a few minutes which is nice. They finally found a gown that is not too tiny for her, and I convinced her to put it on.

They are trying to get her to drink some. She had a little Sprite. She said that she wanted a popsicle, but laughing made her feel a little sick. So she didn’t eat it.

Still monitoring her pneumothorax with chest x-rays. So far no real changes.

A funny: Tommy wanted to ask Dr. Kirklin when we saw him again about how the Glenn procedure that Rachel had in China looked. He was in CICU when we went to visit this afternoon, so Tommy asked. Dr. Kirklin said, “It looked like a Chinese Glenn. It definitely looked Chinese,” and then started chuckling. Tommy was a little miffed that he didn’t take his question seriously. I though it was funny!

Rachel seemed to be staying awake more during our last visit. She has not felt like watching tv when we asked her, but we turned it on before we left this time since she’s staying awake. We met her nurse for the night shift. She seems really sweet.

I cannot brag enough on how nice everyone is who we have interacted with here at UAB. Every single person from transport to nurses’ aides, nurses, doctors have been super super nice and go above and beyond to answer questions or get us what we need. They all seem to work together really well too.

Here’s a few pics from our last visit. Erica, I counted–she has FIVE chest tubes. Also, the nurses told us that she is at the exact same station YouYou was at during her first stay in CICU.

We have another photos that is too risque to post. It’s of her laughing nude phase.

A Good Night

I can hardly believe I spent the night away from the hospital. Yesterday I kept thinking, “I’m not going to be able to leave. I’m going to end up sleeping in a chair in the waiting area.” But when we went to see Rachel last night, she was sleeping. The nurses on last night were super sweet. I told them we were going to stay with friends but not to hesitate to call if Rachel was upset. One nurse told me, “If it was my child who was crying and no one called me, I would be upset, so we won’t let that happen.” They also said that they wouldn’t let her hurt any. I felt like she was in great hands and felt no anxiety about leaving her. God has been so good about giving me peace that passes understanding. It simply makes no sense how calm I’ve felt through all of this.

It was SOOOOOO WONDERFUL to get a good night’s sleep in a regular bed! I’m ever so grateful to our friends the Hammonds for opening their beautiful home to us last night. It was great just to get out of the hospital and talk about normal things for a while. We have not seen them in over 10 years, so it was good to catch up a little too. They were very understanding about how exhausted we were though. I cannot thank them enough! I feel like a new person today!

I called to check on Rachel this morning at 6:30, but they were in the middle of a shift change. CICU visiting hours started at 8:30. We got here about 8:45 due to traffic. I could hardly wait to get in to see how Rachel’s night was. She was sleeping when we got here but opened her eyes when we talked to her. The nurse said that she had a good night. She asked for us once and her nurse told her that we would be here when it was light outside, so Rachel went back to sleep. She’s still pretty groggy this morning. She would open her eyes and look around then close them again. She’s still pitiful. She cried a little bit but not much. I think she feels too bad to cry much. We stayed with her a little over an hour, but she’s mostly sleeping. Everyone is so understanding about her “special circumstances”. The nurse manager came over to meet us and pretty much said that we could stay as much as we needed to. They would have let us stay longer. But we left to let her rest. That’s what she needs most right now. We’re in the CICU waiting room. I asked the nurse to come get us if she wakes up or asks for us, and she said that she would. A little before we left she said pointed to her chest and said that it was hurting, so the nurse gave her some pain med and it knocked her out.

The doctor who is over the CICU today came by to talk with us. She shared that her little sister was adopted from China as a baby! She’s ten now. So cool.

The doctor said that her pneumothorax is about the same, maybe slightly larger, but that it’s not hurting her at this point. They are just keeping a eye on it right now. She also said that her heart was not quite pumping exactly like they want it to yet. It’s beating slower than they would like, so she is hooked to a pacemaker now to keep her heart rate where they want it. Because of these two things, she will stay in CICU today.

Brooke the child life specialist who we met during our July visit came by to see Rachel this morning. She is a sweetheart. She said that maybe Rachel would feel like playing this afternoon, and she would bring her case of Barbies to the CICU. She and Rachel’s nurse wanted to hear our Mandarin Cinderella dvd, but Rachel didn’t feel like watching a movie.

THANK YOU! THANK YOU! THANK YOU!!! We have truly felt all of the prayers. Will update when I know more.

She’s Awake

The nurse called us to come back while I was writing that last update. The nurse said she had opened her eyes briefly and tried to pull at her tubes. We sat with her a few minutes. Then she began opening her eyes and looking around then closing them. She would nod in response to questions we asked her. She occasionally would try to reach up and grab the ventilator tube. She was soooo pitiful whenever she would try to talk and she tried to cry a few times but no sound would come out. So hard to see. But I kept talking to her and that seemed to calm her down. We were able to stay with her about an hour. Then we had to leave during the shift change.

When we first got back in CICU, the doctor who runs it said that they had done a chest x-ray (they do them on everyone) and that she had a small pneumothorax (air between lung and chest cavity wall). He said that if it got worse they would have to put another chest tube in. But they did another chest x-ray while we were there, and it was not getting worse. So that doesn’t seem to be a big concern.

They took her off of the ventilator while we were there also. Poor baby! She was so pitiful trying to talk once they got it out. Her throat was extremely hoarse so that she could hardly make a sound even once the tube was out. It was hard to understand the things she was trying to say. I finally figured out that she was saying, “I can’t talk.” Then she told me “I don’t feel good.” Oh, I know baby! It just breaks my heart. I keep telling her that she will start feeling better real soon.

I was surprised by how much she was moving around already. She kept moving her legs and arms around. Whenever we asked her where she was hurting, she would put her hand on her chest. It’s just too much–to think about what her little body has been through today. It’s just amazing too! To think about what her body’s been through and to see her already moving around and talking!

We just need prayers that she will have a smooth night tonight. We are waiting to see how this nurse coming on will be about letting us stay with her. There is another visiting time from 8-9:30. So we will definitely see her then. If she’s doing okay, we will probably head to our friend’s house to get some rest.

All Is Well

We got the call at 1:20 that Rachel was off of bypass and they were starting to close her up. Then about 2:30 they took us to a conference room to meet with the surgeon. He came to talk with us just before 3:00. He said that everything went as expected and she’s doing fine. One minor thing is that she has a narrowing on an artery to the left of her heart (from where something was attached in her previous surgery if I remember right). They were going to decide which side to do the hook up of the inferior vena cava to the pulmonary arteries on depending on how things looked when they got in there because, as we’ve heard multiple times “Her anatomy is very unusual.” (For further explanation of surgery see previous post here). If they hooked up on the left side, the plan was to go ahead and fix the narrowing. If they hooked up on the right side, she would have to have the narrowing opened up through another heart catheterization. They ended up going through the right side because there would be less cutting involved and less bleeding which sounds great to me.

A good thing is that there was a possibility that they would have to leave a fenestration (a small hole) between a vein and the heart to prevent pressure build-up in the veins. Dr. Kirklin said that they would determine if this was needed during surgery but that if she did have a fenestration her oxygen saturation would not be quite as high. (Her oxygen sats run 80-85%. Normal is 100%. Post-surgery without fenestration would be normal.) They did not have to do the fenestration.

We got to see Rachel in CICU around 3:15pm. She looks MUCH better than we expected. Of course, she has LOTS of tubes coming out of her. She was still on a ventilator, so her oxygen saturation was 99%. But her toes were warm instead of cold and clammy and were pinker than we’ve ever seen them. They will gradually start to wean her off of the ventilator and most likely take her off of it later today. She was still knocked out. We stayed and talked to her nurse for a while. Her nurse told us that we could go eat and she would call us when Rachel started to wake up.

We walked a block away to a Mexican place. It was good to get out.

Hopefully, she will be out much of the next 24 hours. Our plans are to stay with our friends Scott and Brenda Hammond. Just rediscovered them on Facebook. So excited to find them! And so very thankful for their willingness to let us sleep at their home. If Rachel’s resting well, I hope to get a good nights rest at their house.

Tommy’s researching our surgeon. His father improved the heart-lung machine to the point that it could be routinely used in heart surgery.

She’s in Surgery

OOPS! Sorry. Tried to publish this one early today but didn’t work.

Rachel waiting in pre-op holding

They came to get Rachel for a chest x-ray last night about 11:40pm right after she had fallen asleep. She was a trooper though.  The x-ray tech let her see her x-ray and showed her where her heart was. Rachel wasn’t impressed.

I was up at five since I kept expecting them to come get us up any minute to get ready. Transport came about six to take Rachel to pre-op holding. We waited there for several hours playing with paper dolls and sticker books. We had the talk again about what was going to happen–Dr. Kirkland is going to work on her heart so that she can run fast, she will be asleep, she will have kind people to take care of her while she’s away from us, we will be waiting on her and she will see us when she wakes up. She kept saying she was tired. Finally, I lay beside her and she went to sleep. Thankfully, she slept when they rolled her away at 8:30. The anesthesiologist said that he would give her drugs in her IV that would knock her out in about 15 seconds as soon as she was taken back.

We went to move our baggage out of the hospital room since she will be in CICU tonight and stopped at the hospital’s Starbucks on the way back from the parking garage. Surgery started at 9:17 and should last about 4 hours. We will get a call when the major portion of the surgery is complete. Then Dr. Kirkland will meet with us after surgery. We will be able to see her about 30 minutes after she gets to CICU. The anesthesiologist said that she will likely not wake up til 3-4 hours after surgery.

Here’s Heart Surgery Bear. Hey, is that one of the Care Bears?