Clara's Surgery Emails

I sent out a series of emails to some family and friends while Clara was staying at PCH to keep everyone informed. I decided to post them for record keeping purposes. It's ridiculous how much I've already forgotten in just two weeks. Good thing I had the sense to write something down! ;)

{May 10, 2012}
Dear Family and Friends,

Clara had her open heart surgery this morning. The VSD repair went smoothly. There is a residual "patch leak." Meaning the patch did not fully close off the hole. The leak is about 2 mm, and the surgeon thinks it will close on it's own and not cause any problems for Clara in the future. The procedure lasted a little over 3 hours which was must faster than we expected. It took about an hour and a half to place all her lines and do the esophageal echocardiogram prior to starting. They told us they had a hard time because her veins were so small. (Down syndrome individuals are known for their small vessels.)

Within 4 hours of Clara leaving us, we were in her hospital room and were able to see her. She's sedated and hooked up to lots of tubes and wires, but she is doing well. We're hoping she wakes up later this evening and can go off the ventilator.

Thanks for all your prayers, calls, emails, and texts. We feel so loved and we have certainly felt strengthened today. We'll keep you posted, but here are a few pictures from today that you might enjoy.

Love, Brooke, Troy, and Clara Bushman :)

P.S., Picture explanations. Some of these were taken before the surgery. Little miss was quite hungry before hand, but she did so well. I was able to rock her to sleep. Isn't her little purple gown the cutest?  And for those of you who care about all the medical stuff, in the pictures you will see Clara has two peripheral IVs, an arterial line, a central line, a chest tube and drain, pacemaker wires, a ventilator, and a foley catheter, in addition to her heart monitor, blood pressure cuff, transducer (she's on 3 drips) and SpO2 monitor. You can also see her incision bandage in the picture. She is very well taken care of here. (I feel like I'm getting quite the RN refresher course today. Ha!) We love Phoenix Children's hospital!

{May 11, 2012}
Time for another update on Clara! This may have more information that you wanted to know. If that's the case, just scroll to the bottom for more pictures! ;)

Yesterday evening, they pulled Clara's breathing tube. They had turned the ventilator down and she was breathing well on her own so they took it out. The little girl breathed all by herself like a champ! They turned her sedation down last night as well to let her wake up a bit on her own. That turned out to be not so good. She was SO upset around 1 a.m. until 4 a.m. She squirmed and cried and cried. She was starving of course, but they didn't want her to eat yet. So the nurse and I tried to soother he with lots of sugar water and wet sponge swabs for her mouth (to keep it moist.) She was given several doses of morphine, which didn't help really at all. I tried stroking her head, singing songs, nothing seemed to help. I'm sure all that squirming was causing a lot of pain. Clara loves to be sitting up. So when she woke up and was lying down, she didn't like that. But doing stomach crunches when you have a 4 inch incision on your chest, isn't the best. She got so mad and was thrashing so much that she pushed her arterial line deeper into her arm and it blew the vessel. So they had to take that out. (Our nurse today said they would have taken it out today anyway, but it makes the blood draws a little trickier. At least they didn't have to place a new one.)

After she destroyed her art line, they decided to turn the sedation up again and then they gave her a dose of Ativan. They let me crawl into bed with her and we slept there together for several hours. At some point in the early morning, the nurse woke me up to move so they could do a chest x-ray. Ha. I was pretty out of it. Clara and I have done much better today because of our extra sleep. She's been sleeping most of the day. They just turned down her sedation so she could start eating later this afternoon/evening. I'm sure that will make her happy! We'll see how she does.

She actually looks worse today. Her face, legs and feet are more swollen. They told us she would look worse before she looked better, so not to much of a surprise. They started her on a lasix drip (a diuretic) to increase urine output and help with swelling. Also, she has a small amount of fluid on her lungs, so the lasix will help with that as well.

We've been learning lots and lots today about new pediatric monitors (ever heard of NIRS monitors?). It's a way to measure oxygen consumption and it's pretty much way over our heads, but super interesting. Basically today, I'm in awe of medical technology. There's no doubt in my mind where these advancements come from.

Also, lots of you have been asking when we think she'll be able to come home. Initially the surgeon guessed about a week. At this point we have a lot of things to worry about before we will be talking about going home. Like eating, and oxygen, etc. We'll know more in a couple days I'd assume.

Thanks again for all your love and concern,

Love, The Bushman Family

Picture Explanations:
Jackson got to come see Clara for the first time last night. He was pretty worried about her. But we explained the doctor fixed her and he seemed to be okay with it. He wanted to give her some kisses. So he did. He had a blast exploring the hospital of course. His visits will likely be short as there isn't much to do around here. Thank heavens my mom is here to entertain him. He loves playing with Grandma! You can see Clara is set up with her little toys. She loves her Tangled doll, so we thought it was only appropriate to bring it to the hospital. Above her in the bed are Clara's "beads of courage." She gets a bead for everything she does at the hospital (every IV, every medicine, etc.) If she ever has to come back she can bring her beads to the hospital and add to them. So cute right?! I love children's hospitals. Alright, enough for now! Sorry to overwhelm you all with information. :)

{May 13, 2012}
Just a quick email to update you all on Clara. She is doing SO much better today. A huge improvement from yesterday and yesterday actually wasn't so bad. Yesterday they discontinued several meds and one of the NIRS monitors. They took out her chest tube yesterday as well. She has seemed to feel much better since that happened. When the chest tube came out, the incision dressing was taken off and we got to see the incision for the first time. It looks really good considering! (I included a picture. It actually looks worse in the picture than it does in real life.) Apparently Dr. Nigro is known for his very neat suture lines.  Last night they also took out one of her IVs.

The only set back yesterday is that she stopped eating. They had to place an nasogastric tube because she'd taken so little by mouth. I was discouraged, but our nurse (whom we LOVE) said it is very common for an NG tube to be needed post surgery. She may go home on the tube if she's still needing it. And apparently that's not too uncommon either. The intensivist, Dr. Rau (whom we also love!), said not to worry about that. Eventually it will be like a light turned on and she'll start eating again, he said.

Today the remaining NIRS monitor was taken off and her central line and remaining peripheral IV were capped off. So essentially, Clara's only wires are her monitors! So today, we got her dressed and took our first walk around the unit. It was so fun! She is so much more herself today. Smiling more, happy and alert. She's so sweet even though she's been through so much.

Thanks again for all your prayers and concern! She is doing so much better and we are thrilled. Happy Mother's Day!

Love, The Bushman Family

{May 17, 2012}
On Sunday, Clara's recovery really started to pick up. So yesterday, we got to come home! She's been off oxygen for a couple days now and she's eating so much better. The NG tube is still in, but we'll take that out in the next couple days as she's been eating her entire feedings by mouth for over 24 hours now.

We are so happy to have her home with us and so glad she's back to herself. Her color is awesome. I almost feel like it's better than it was before her surgery. She has been smiling and talking and laughing all day today.

Thank you for all your calls, texts, and facebook messages. And of course your prayers. We feel so blessed that things went well and that Clara is doing so well. We'll have to keep her in for about a month to keep her healthy, but from here on out, things are looking up! We love and appreciate you all.

Love, The Bushman Family

The first picture is of Clara hanging out in her hospital bed waiting to go home. The second picture is Clara so happy to be home! (and in her ice cream cone dress from our friend/speech therapist. So cute! Thanks Richelle!)

Surgery Day

On the morning of May 10th I awoke at 4:30, 15 minutes before my alarm. We went to bed late the night before-- it must have been close to midnight and I didn't really sleep much. Despite this I felt very alert and also peaceful. I was ready to get the day over with. I showered, made myself eat some fruit and then we packed up and headed out. We arrived at Phoenix Children's at 5:30 a.m. We checked in and then waited to head back to the O.R. I had this surreal feeling all morning. After 6 months of anticipation, we were finally at the hospital to fix Clara's heart. Clara didn't seem to notice. She was happy as a lark even at that early hour with no food. So we took the opportunity to take her picture of course.

Once back in the O.R. pre-op unit, we changed little Clara into a gown. They also gave her a little bear to keep her company. I thought she looked pretty cute in her purple get-up. We hung out in that room for about an hour while we met the anesthesiologist, the cardiac team O.R. nurse, and talked with the surgeon Dr. Nigro again. Everyone was fabulous. The nurse told us everyone on the cardiac surgical team had been working together for 7 years and that every person was carefully screened before being hired. He also said Dr. Nigro is the best at what he does. Knowing that brought us a lot of comfort.

While we waited Clara started to get hungry and a little sad. She was such a good girl though, I was able to rock her to sleep.

Clara was actually still  asleep when our the nurse came to take her back to the operating room. That part was hard. I quietly told her she needed to be really good back there. {I'd been talking to her about this for days actually, how she needed to be brave and come through like a champ. She seemed to be listening intently each time, but let's be honest, those pep talks calmed my nerves more than anything.} Troy and I each gave her a few big kisses and I carefully handed her over to the nurse. And then I muttered something to him about taking good care of her. He was very considerate, but as he walked away I couldn't take my eyes off her. I had this fear in the back of my mind that we were saying goodbye. Before I knew it Clara and the nurse had disappeared behind the O.R. doors and we were alone in our pre-op room. It's funny, since Clara was born, I kind of associate hospitals with traumatic events and being alone in those sterile rooms.  Luckily, Troy was with me for this one, because I might have really lost it. With him by my my side I held myself together. I allowed myself a few tears as we walked out of the pre-op area but didn't let myself think too much about what was going on behind those doors after that.

The procedure was estimated to take about 5 hours. We ate breakfast in the cafeteria and then set up for the long haul in the O.R. waiting room. They told us it would take about 45 minutes to get all her lines in place {central line, arterial line, and 2 peripheral IVs}, but it actually took more than twice that amount of time. Dave the RN came out to tell us it had taken much longer than expected. They had known it Clara would be hard because vessels are so small in Down Syndrome kids. We could see later that they tried 4 or 5 times in each extremity. She was covered in little prick holes. It was kind of sad. At least she was asleep for all that poking and prodding.

Dave the RN continued to come out regularly during the surgery to update us. We didn't like this so much. When he wasn't around it was easy to distract ourselves and forget that our child was having open heart surgery a few doors down. As soon as we saw him walk into the waiting room my stomach would drop. Troy told me later he kept trying to read his face as he walked towards us to determine if the news was good or bad. Other than the anxiety over Dave's visits, we both felt remarkably calm. Troy entertained himself by watching some funny BYU football videos on you tube. He was actually laughing out loud a lot of the time. All the other parents in the waiting room seemed very tense, so our laughing seemed almost irreverent. Ha! Like I said, we felt pretty good about things when we weren't being visited by Dave the RN.

I went upstairs to the Cardiovascular ICU to find a room to pump. Before I made it back down to the waiting room, Dave had come back to tell Troy the hole was patched and they were stitching Clara up. It ended MUCH sooner than we expected, which was nice. After about another hour, Clara was all situated in her CV-ICU room, they let us back to see her. I was really anxious to see what she'd look like. They told us she'd be asleep for a day or two and that she'd be swollen and puffy. This is what we saw:

She was on three drips, a ventilator, had a central line, arterial line, a chest tube, pacer wires, and two peripheral lines places. She also had a NIRS monitor on her forehead and lower back to measure oxygen consumption. She was a mess of wires and tubes. But at least we could see her and talk to her and give her kisses. It felt much better to have her in the room with us, even though she wasn't really conscious.

I thought this was really cool. While the surgeon patched the hole, Clara's heart was stopped and she was on the bypass machine. After they restarted the heart and put the blood back into her body, they drained the rest of the blood back out of the bypass machine and bagged it. Then they transfused it back into her from the bag, thus limiting the amount of donor blood she'd need.

Later in the afternoon, my parents brought Jackson in to see Clara before my Dad had to go to the airport. I went out to the front desk to meet them and on the way back to Clara's room I explained to him that Clara was really sick, but that the doctors had fixed her and she was getting better. He seemed pretty nervous when he saw her on the bed with all those wires. But, I told him once again that she was getting better and then he seemed to relax a little. He wanted to give her a kiss. He was so cute with her while she was in the hospital. After she had been kissed, Jackson set about exploring the room and entertained himself with the stickers in his kids meal from Subway. Silly boy.

It was a long day, but it was good to have it over with. I'm so grateful my parents were able to come into town to help us. Having them there to take care of Jackson made all the difference. And Jackson had a blast with them. That night, I stayed at the hospital with Clara. She was given presedex for sedation, but because she had done well all night, they decided to turn it down to see how she'd do. She woke up around 1 a.m. and was so so sad. She cried off and on for 3 hours straight. The nurse was giving her dose after dose of morphine and nothing calmed her down. Finally they turned the presedex back on and let me climb into bed with her. Poor girl. I'm glad the entire hospital experience wasn't like that. I felt bad she couldn't tell me before then that she needed pain medication. Luckily she did much better after that. A few more rough spells, but nothing like the first night. More pictures of our hospital stay to come!

A Night Out with Gma and Gpa

My Mom and Dad flew in the night before Clara's surgery to be us. They arrived early that afternoon so we had some time to visit and play before packing for the hospital. We went to Johnny Rockets for dinner because I knew my Dad would love it. It was good as usual.

Jackson didn't last so well at the end of the meal, so Troy took him outside for a walk. It just so happened the Harkins Theaters next store were shooting a commercial and ask Troy and Jackson to participate! They run up the to the theater 5 or 6 times while on camera. Jackson got a little ahead of himself and tripped during one of the shots. He fell and skinned his knee and was less enthusiastic after that. (Turns out the release form really was necessary! ha ha.) We got two free ticket vouchers out of the deal. Hooray for that. And now Troy and Jackson are pretty much famous. Perhaps you'll see my boys in all their glory next time you're at Harkins! ;)

Cinco de Mayo 2012

We spent Cinco de Mayo in Gilbert at the Johnny and Megan Tefteller home. They held a farewell fiesta for our dear friends Matt & Allyson Tefteller who are moving to Utah to finish their final year of podiatry school. We are going to miss them so much! Matt & Allyson moved into the Strayhorse apartment complex the same week we did. I still remember Matt bearing his testimony that first Sunday and feeling like he and Troy were similar and that we were all going to be friends. :) We've been together for the whole medical school ride and it's going to be strange having them gone. Allyson was so sweet to make me feel better when I felt like I was sort of losing my mind after Clara was born. She has definitely been a calming influence in my life. I'll miss her.

We've had some pretty fun parties with this group of peeps in the past and this one was no different. (We were just missing the Ashbys!) Megan had an entire Cafe Rio-esq spread of loveliness for us to eat. Complete with cinnamon-sugar tortilla strips and ice cream! Yum!

Jackson had a blast playing with Connor, Emma, and Graham. After a few minutes in the sprinklers, he was soaked and preferred to walk around in his diapers. Ha. He looks pretty fabulous in all the photos. Johnny and Megan also had a pinata for the kids. Jackson loved hitting that thing. When Johnny finally broke it open and the little guys discovered candy was inside they were all thrilled!

The Med students and all the children.

And the wives with all the children. :)

Thanks for the great party Johnny and Megan. It was fantastic. We'll miss you Matt and Allyson! Good luck in Utah. We hope to see you again before too long.

First Ever Father's and Sons

Last week, Troy took Jackson on his first-ever Father's and Son's overnight camping trip. Jackson was with us when we bought the tent and he couldn't wait to sleep in it. He asked about it everyday leading up to the trip. Ironically, Troy got home late from school that day. It's ironic because he's had been off by 1 or 2pm every day up until that point. By the time Troy and Jackson made it to the campground, it was already dark. Luckily Chris Fowler and Daniel Clement helped Troy set the tent in the dark. Kind of tricky, not being able to see when you're just opening and assembling for the first time. 

Arriving late didn't damper Jackson's mood though. He was so excited to eat marshmallows and then play in the tent. So that's mostly what they did. They tried to watch a movie on our DVD player, but it sort of malfunctioned, so they spent some time sitting by the fire instead. The next morning he told Troy he wanted to go home and see Mom and Clara. Ha! Sweet little boy missed me. :) So after a short hike, (where Jackson encountered a cattle guard and was very nervous to walk across it) they headed back home. They were home by 9 a.m. and the campsite was 1.5 hours away. Silly Jackson. But they had fun. I'm so glad Troy and Jackson got to go because, let's be honest, Troy was just as excited as Jackson.

Troy was so good and took some pictures with his phone so I could put them on the blog.

These last few are some randoms Troy took on his phone. Jackson is a silly boy.