Thursday, March 15, 2012

The Rest of the Story

Michayla continued to amaze the medical staff in how quickly she was bouncing back from such an invasive surgery.  She played on her bed and was awake more and more.  The surgeon and PA would check in on her progress, radiology did a daily chest xray and the nursing staff was wonderful with her care.  She took a few laps around the ward that always brought smiles to the staff and her.  The chest tube had to stay in for almost 3 days.  The surgery was on Tuesday and the chest tube came out on Friday morning. They also removed the "pacer" wires at this time.

We were hoping to be released on that Friday because Michayla was doing so well.  When the surgeon & PA came to make the decision on whether or not she could go home, they found us out on our walk with her.  (she was on lap 8).  They knew she was ready to be released.  So we pack up all of our stuff as the nurse gathers all the paperwork.

The nurse goes over her at home care:  no submerging in a tub, pool, hot tub, etc.  She can have sponge baths or sit in a tub with minimal water in it.  It's ok for the incision to get wet, just not to lay in water (fear of infection).  She would need to continue Lasix (pulls the fluid out) for 3 days.  We were given 10 doses of oxycodone for pain and we're told we could alternate Tylenol & Ibuprofen to help with this as well.  We needed to pick her up by cradling her instead of under her arms which would pull on the chest.  We would need to keep her from overdoing (no excessive pushing or pulling).  We would need to watch for infection around the incision.  Michayla's IV's were all removed & she was finally free of wires & tubes.  We got her dressed and waited for the okay to leave.

The staff brought up a really fancy wagon to help transport our stuff and Michayla to the car.  She got to ride high and wave good bye as we made our way out of the hospital.

The next few days went well and she slowly weaned off the pain meds.  She self limits her activity as to not pull or hurt her chest.  The one stitch she had from the chest tube was removed about a week later and she has a follow up appointment with her cardiologist at the two week mark.

Our daughter did so much better than we ever thought she would.  She showed us strength and determination.  We look forward to the day she's completely healed!!  Her heart was working twice as hard as it should have been, so once she's well......we wonder how we'll ever be able to keep up with her.

Thank you for sharing our journey and hopefully this will help other parents out there that are faced with an Atrial Septum Defect Repair.

The First 24 Hours

At 1:30pm, my husband and I were able to see Michayla in her ICU room.  One of the monitors was going off and nurse was trying to get the alarm to stop.  I guess just before we got there, Michayla had jerked her arm with the arterial line in it & it was no longer monitoring blood pressure.  The staff was hoping after she calmed down, the artery would stop the spasms and would again monitor things.  Michayla was very groggy but did look up and make eye contact with us.  She was fine as long as no one came in to bug her.  With her hooked to the ventilator, it made it very hard for her to cry.  They didn't want to remove the tube too soon, as she is a hard intubation.  After the ICU Doctor came in, it was decided the arterial line & the tube could both be removed.  The nurses came in & removed the tape holding the tube in & while trying to decide who would pull the tube & who would suction, Michayla shifted down in the bed & basically removed it herself.  The nurse then removed the IV/Arterial line out of her right wrist.  This was about quarter to four.  The rest of the day and into the evening, we sat by her side and tried to keep her calm.  The nurses kept on top of her morphine and tylenol dosages to help keep the pain under control.

The ICU room has only one day bed, so my husband & I took turns at sleeping, while the other sat at Michayla's bedside.  We didn't want her to wake and be afraid of her surroundings.  I stayed up until around 1:30am and then took my turn at laying down.  During the 3 hours I slept, Michayla had woke up startled & did a forwards somersault on the bed.  Luckily none of the IV's or chest tube came loose.  She settled back down & slept for the rest of the night.  I got back up at 4:30am to take another turn at her bedside.

Even with Michayla losing the ventilator/tube and the arterial line, she still had an IV in her left hand, an IV start in her right foot,  a central line in her neck, 2 sets of "pacer" wires (so if her heart beat was too fast, too slow or irregular they could "zap" it in to an acceptable rhythm) and a chest tube (that allows the fluids in her lungs and around the heart to drain out).  They had a blood pressure cuff on her left arm & an red light taped to her finger to measure the oxygen levels.

Around 7:30am, Michayla's surgeon and PA came in to check on her and to let us know that they would be leaving the chest tube in since there was still a lot of drainage.  Since Doernbecher's Children's Hospital is part of the Oregon Health Science University's is a teaching hospital.  Around 8am, we had about 12 people stop outside our room, and the ICU doctor reviews the case with the interns and talks with them about her treatment and recovery.  After show and tell, the radiology department shows up to take a chest x-ray.

Michayla was more alert this morning, but you could see she was uncomfortable.  She tried to cough, but choked and ended up throwing up.  The nurse came in and we cleaned her up and changed her bedding.  The nurse asked if we'd like to try and hold her.  Of course we did, so she helped with all the tubes, while my husband lifted her off the bed and set her on my lap.  I just wanted to hold and hug her, but she was very uncomfortable, so we laid her back on the bed.

Around 11am, it was time to get Michayla up and try to get her on her feet.  The nurse helped with all the tubes and machines hooked to her, to make it so we could get her out of her room and walking.  We probably went about 30 feet, got her to step on a scale to check her weight, and then back to the room.  She wasn't super happy but she did it!!

I'd say about two hours after this walk, we saw a huge change in her.  She was more awake, smiling and even making a few coo noises.  We had been waiting on a room to open up in the regular pediatric ward and we got word that we'd be moving upstairs.  We were thrilled, because we'd both have a bed to sleep in and we'd also have a shower.  About 5:30pm, we were finally taken to our new room on 9south.

Once in our new room, Michayla sat up in her bed & played with a toy for a few hours.  She was smiling and giggling at times.  I couldn't believe how well she was doing.  We had a good night, we only woke once but quickly settled.  In the morning, we could see that our Michayla was feeling good and all our worries and fears fading.

Wednesday, March 14, 2012

The Big Day.

We set our alarms to go off at 5am.  We had packed up the night before, so all we had was one bag to get in the car.  We get Michayla up and dressed and head out.  We get outside to find that we had a dusting of snow.  It was pretty.....but made for a cold morning.  We head up to the hospital and arrive just before 6am.

Our first stop is the registration desk.  We were about 4th in line, so we took a seat & waited to be called up.  They go over our information, put a bracelet on Michayla and then we both get a bracelet as well.  We are sent up to the 8th floor for surgery.

We check in and are seated until one of the nurses comes out to get us.  Michayla is called & we head back.  They weigh & measure her and then put us in a room.  The nurse comes in and takes her blood pressure and temperature.  Our PA, stops in and makes sure nothing has changed over night with her health.  The anesthesiologist checks in with us to explain what the plan is.  The surgeon pops in to say good morning and then we wait until they're ready for her.  We didn't even change her into a gown.  They wanted to keep her anxiety down, so my husband was able to carry her to "the line" (the line indicates how far family can go with the patient as they're wheeled down towards the operating rooms) and then pass her off.

They told us that she would be given gas to put her to sleep before they did changed her clothes, put in the IV's and prepped her for the operation.  We had a nurse assigned to our daughter.  Her job was to keep us informed on what was going on by calling my cell phone through out the process.

We were told it would take about an hour of just prep before they'd even start with the surgery.  She would need to be intubated (tubed), a central IV line would need to be placed in her neck, an arterial line would need to be placed in her arm, an IV in her other hand and in one foot.  She would be cleaned with a sticky version of betadine (the yellow soap).  The sticky version allows them to place a sterile dressing over the chest & then make the incision through that.

We receive the call that the intubation was a little harder than most, but we knew this was a possibility due to her history.  They were preparing to start the surgery.  Our next call would be when they had her off the bi-pass machine.  We were told that her heart and lungs would be on bi-pass for approx. 40 minutes.  This is a very short amount of time and the shorter the time on bi-pass, the better.  So we waited for our next phone call.

Our next call came to let us know that the operation part was over and that she had done very well.  It would take a bit before she would be ready to move to the ICU room.  The surgeon would be coming out to speak with us soon.

The surgeon said she did really well but the hole was bigger than they thought.  Originally it was thought to be about the size of a dime (which is a huge hole in a 4 yr old) but it actually was the size of a nickel.  They also found two small holes we weren't aware of.  The team was able to patch all the holes and everything looked good.  We would be contacted in about 30 minutes when we could meet her at the ICU.

We waited and waited and waited.......when we hadn't heard anything after 90 minutes, we decided to check in at the desk.  They made some calls and we were sent down to the pediatric ICU.

It was hard to see my sweet girl hooked up to machines, tubes & wires.  The thing I noticed immediately was the size of the incision.  When someone says Open Heart envision a cut from throat to belly button, but her incision was about 2 inches long.  We were shocked and amazed!!  It was great to see her & hold her hand but I knew the next few days were going to be hard.

The days leading up to the Big Day.

We live about 2 hours from Doernbecher's Children's Hospital in Portland, so we knew we'd need to stay a few nights in a motel.  We headed to Portland on Sunday afternoon so we could be at the hospital at 7:30am Monday morning.

We start by checking in at the Pediatric Specialty Clinics on the 7th floor.  Michayla is weighed, measured & got her blood pressure taken.  We're taken to a room where one of the cardiac nurses comes in and talks with us on what to expect.  We are given paperwork to fill out & then speak with a Physician's Assistant who will be with Michayla for the surgery & follow up.

They give her an exam to make sure she's healthy and able to have the surgery.  They want to make sure they don't have any infections, fever, open sores on the chest or tooth issues.  All of these things could be very dangerous with this type of surgery.

The cardiac surgeon then comes in and talks with us to explain the surgery and answer our questions.  He also goes over the risks that accompany this type of surgery.  The risks are actually figured to affect only 2%, so we felt pretty confident that this actually was a safe surgery.

Once the surgeon left, our PA told us that we had one of the best surgeons......with many years of experience.  So that also helps ease our fears.

After our pre-op appointment, we were next sent to the lab for the first round of blood work.  Michayla did really well & fussed for only a minute or so.  She was able to pick a prize from the box when she was done.

We had a short break before our next appointment, so we left the hospital to have lunch.  Unfortunately, Michayla wasn't able to have lunch.  She was going to have sedation later in the day.  I guess I've never mentioned that Michayla is 100% g-tube fed.  She doesn't eat anything orally.  She's also autistic & cognatively a 9-12 month old.  This made things harder on us, because we didn't feel we'd be able to explain to her what was going on.  She's non-vocal, so she wouldn't be able to tell us she's scared or hurting.  So this added to the anxiety we already had.

We returned to the hospital and were given a tour by social services.  A non-medical person, who shows us the ICU rooms, explains that she'll be hooked up to a lot of different machines, shows us where the parent's pantry is, explains we'll be able to stay with her, lets us know about having meals sent to her room during the time she's admitted, answers our questions about what's available to us while she's in the hospital.  They even gave her a doll with a play stethescope & bandaids.

After our tour, we headed over to the main Oregon Health Sciences University Hospital to go to Pediatric Sedation.  We've been here a few times & they even remembered Michayla.  The nurse comes out & puts a special cream on her hands & then covers them with co-ban wrap.  The cream helps numb the skin, which helps the staff when it comes time to put in her IV.  We sit in the lobby for about an hour & then are taken back to her room.

The nurses come in, remove the co-ban & look for a vein to put the IV in.  Unfortunately, this ended up being a hard IV to start.  It took two different people & three tries.  It was heartbreaking to see her being put through that.  Once they got the IV in, the anesthesiologist pushed the propofol & Michayla quickly went to sleep.  At this point, we were asked to go back out to the lobby.  She was getting another echo, a chest xray and her second set of labs.

It was about an hour later that we were able to go back in to see her.  It took quite a while to get her to wake back up.  Once we got her awake, we were able to leave.  It was now after 5pm.  It had been a very long day and we were anxious to get back to the motel for dinner and to hopefully sleep.

Our return time for the big day was 6am.

A Parent's Worse Nightmare

From the time Michayla entered into our lives, we knew she had a heart defect.  She was born 6 weeks early with her twin sister Shyann.  She was given a diagnosis of Pierre Robin Sequence, as well as a number of other issues.  We were aware that she had a hole, an Atrial Septum Defect, that would eventually need to be repaired.  Michayla was followed by a wonderful cardiac team at a premiere Children's Hospital.  It was thought that the repair would be done through an artery in the groin.  On her last Echocardiogram, it was decided that this was no longer an option.  Her cardiologist started the conversation by stating the hole is the size of a dime & unfortunately due to the location it wouldn't be able to be fixed as previously thought.  She continues on, letting us know that she would require open heart surgery.  No parent wants their child to have surgery of any kind; but to hear open heart surgery, it really was a scary notion.

Of course, the cardiologist assured us that everything would be fine & these surgeons do this everyday.  That may be so, but this is OUR child & we aren't really comforted by this statement.  The surgery was non-emergent but should be done before she gets much older.  At this time, she was not showing signs of a heart defect and it would be best to have it repaired before it did.

We gave it some thought and decided since she would be turning five in May, we'd set it for this summer.  This way she would be healed up before starting Kindergarten.  I called the office to let them know our decision.  The RN told me the Cardiac Team would review Michayla's case at the quarterly meeting.  We requested to have the surgery in July.

In the middle of February, I receive a call from the Cardiologist Office.  The RN informs me that the team had met & would like Michayla's surgery to take place in the next couple weeks.  I said, that's a lot sooner than July.....almost questioning the urgency.  She said, that is when the team wanted it done.  So to be honest with you, I'm not sure if they saw something that made them decide it needed to happen sooner, or they just ignored our request for doing it in the summer.  We had been noticing that Michayla was sleeping a lot more than usual, so maybe this was the right time.

We made arrangements to have her up in Portland the week of March 4th.  My husband had to take the week off from work & we needed to make sure the other kids would be taken care of.

Sunday, March 4th arrived & it was time to go to Portland.