We are with Maya in the Cardiac Intensive Care Unit

It is 3pm and we have been with Maya now since 1pm. She is doing
great, although when we came into the room, she was just coming to,
and was really upset and had a frog voice from the breathing tube just
being removed. Once we gave her the binky, she calmed down and fell
back asleep. Her RN (they have 1-1 while they are in the ICU) Sara,
is with us until 7pm tonight. She is very nice. Maya has 4 IV sites,
two in her feet, one in her neck and an arterial line in her wrist
(this is how they are monitoring her blood pressure). She also has a
chest tube, draining blood from the chest cavity, on the left side
below the surgical incision area. She also has some oxygen blowing on
her to keep her oxygen saturation (O2 sats) up, as with anesthesia, it
can make them sleepy, and not taking in enough air. See attached
picture of Maya in her crib/bed in the ICU (the RN said she ordered a
bigger crib, but we haven't seen it yet)

Surgery successful, she's getting patched up now

Maya's surgeon came to give us the word that she came through wonderfully.  The operation was quick and nothing new was found of concern regarding the heart.  The PDA was closed with a clip and the place the anomalous vein was cut from was both sutured and clipped.  The clips are titanium and will be integrated with the body, and as I have no titanium objects, I did not know whether they are influenced by magnetism or not.  Turns out they are not.  This is important as she will be able to get MRI's in the future with no concerns for the clips ripping out.

They found some areas (5%) of thin lining on the left lung which the Surgeon felt were nothing to be concerned about, but that we will have the Pulmonologist check out anyway and rule out anything to be concerned about.

Updates will follow later as more things to show and tell occur.

-Chris

Maya has gone in for surgery

We arrived at the hospital at 6:30am to the pre-op admitting area.  They checked uAs in and we waited with the other families that were also waiting for surgery.  We saw some of the families that we had met yesterday.  One of the families in particular has been amazing to watch.  They are from Maine, and are here with their 14yo son Josh.  I am not sure all of Josh's issues, b/c he is in a wheelchair and has some other disabilities as well.  Josh is quite funny, and keeps everyone laughing.  He loved Maya yesterday, and remembered her name this morning.  He introduced us to his nana, aunt, father, father's girlfriend, and others he had met that morning.  What amazed us about this family was the closeness that they have.  In addition to Josh there are two other children, a girl who will be a freshman in college this fall and another boy, who is probably in high school.  The mother, step-father, two siblings and Josh were at the hospital with us all day yesterday, a very long day.  Not once did they get annoyed with each other.  They were all joking around with each other, and showing genuine love and concern for Josh, something that you don't always see with teenagers.  As I mentioned before, Josh had some issues.  His mother shared that he was born here at Children's and was born with only 1/2 a heart.  He didn't have an aorta.  She said that he had multiple surgeries when he was born, all of which caused him to have a stroke each time.  The last surgery he had was when he was 4yo and it left him in a coma.  So here they are 10yrs later and Josh with his blue lips (cyanosis) was undergoing surgery again, this time to place a shunt in one of the major arteries.  I can only imagine their fear, considering the outcome of the last surgery. 

As I mentioned before, we were all corralled together in the pre-op waiting area, and the three cardiac surgeries that were scheduled for 7:30am this morning (Josh, Maya and Natasha, who I will share more about later).  Then the nurse came and called all three families.  We were all escorted up to the 3rd floor which is the pre-op holding area and surgery waiting area.  The pre-op holding area only allows 2 people to be bedside with the patient, so Josh had to say goodbye to his entourage.  Most touching was watching his brother say goodbye to him, with tears in his eyes, which caused his mother to cry.  Josh of course tried to lighten the mood for all of us with humor.  We were then escorted to the pre-op beds.  Maya, Natasha and Josh were curtains apart.  At this point, a nurse came in and asked us to get Maya into the scratchy hospital gown(I think there must be one company that makes these gowns for kids, because they are the same design in all the hospitals we have been to.  It is the clowns and circus animal print in red, navy and yellow.  We experienced the same ones at Philly and Hartford too.  Maybe they get a good discount on the ugly fabric in China or somewhere.  Anyway, so we got her into the gown while Maya was watching a show on the tv about funny pets on the Animal Planet channel.  We were there for about 15 minutes watching the show when the anesthesiologist came in with the pink medicine (this is the stuff that knocks her out).  She spit some of it out, but we got most in.  Then the anesthesiologist shared with us that there were some changes today from yesterday.  She said that the breathing tube will most likely come out before she goes to the ICU.  This is due to the fact that they want to give her a caudal (shot in the buttock region that works like an epidural, but goes up vs. down), the purpose of which is to eliminate the pain in the chest cavity area, which is going to be very painful.  This will cut the pain down for 12+hrs, and eliminate the need for her to be so sedated right after the surgery.  We were a bit nervous because there is always the "slight risk of nerve damage, that is very rare".  UGH I hate even hearing these things.  Of course they are required to tell you this b/c they have to warn you of all the risks in advance, so you can sign away.  So after this long discussion, another anesthesiologist had now joined us, as did the surgical nurse.  It was like they were hawks waiting for the kill.  They were waiting, it was just for the "pink medicine" to kick in so they could take her back for surgery.  Then the surgical fellow came in to talk with us.  He was able to answer my question about the location of the chest tube.  I wanted to know if it would be in the same location as the cut for the surgery.  It is not.  She will have a small incision on the left side where the chest tube will be inserted, and she will have a horizontal incision going from the breast area to midway on her side ( I am guessing it will be about 3 inches long).  For some reason, I was thinking it would be vertical.  Poor Maya.  Now she will add these scars to her left side in addition to the 4 small scars on her right side from the CCAM surgery.  Bikini model is not in her destiny. :-0
So we had about 10 minutes of the hawks waiting.  Then they came with the heated blanket and we gave Maya big hugs and kisses, and they took her away for surgery...
We then went for breakfast in the cafe, and now we are back up in the waiting area.  The nurse just gave me an update that they have made the incision at 9:35am.
More to come... Victoria

Pre-op procedures complete, ready to go 1st in line tomorrow

Last night we had a late departure time for Boston. Between Victoria finishing up work projects, me setting up an AOL Instant Messenger account and program for Brianna so we can use web cams to chat with her while we are up here, and the emotional farewell to Grandma and Brianna, we didn't move out until 10:00 PM, and didn't get into the hotel until past 12:30. We then had to awaken at 5 AM for 7:30 AM start to a day of pre-op procedures and consultations. So needless to say we are all exhausted.

Before I describe Maya's day, let me say that Brianna was such a compassionate and loving sister yesterday to Maya. She insisted Maya accompany her to Taekwondo, and I know it was because she wanted the extra time to see her sister before she left for the hospital. Brianna is aware of generally what is going to happen and how long Maya will be gone for. On the ride home from her Taekwondo lesson, Brianna said that she didn't want Maya to go. "I want to get the operation for Maya," she offered, then demaned. How loving is that?!

So on to today. After check-in, we were taken to a central control room where all of the pre-op procedures and all of the patients were written on a white board, and as procedures were finished, the nurses crossed off that procedure. There were about 12 children all getting the same pre-op day procedures done. We ended up talking with many of the children and parents and spent the day crossing paths with them as we waited in various areas. The procedures and consultations/legal sign-offs were pretty quick, but the waiting was very long, especially to talk to the surgeon, which didn't happen as he was too busy operating. We did meet with the cardiologist, anesthesiologist, and the surgical fellow from the team. The one bit of information that we learned from the surgical fellow was that her procedure is actually very painful, much more so than open-heart (cut open the chest via the sternum) procedure, although it is safer, as she will not be put on a heart-lung bypass machine. So they will keep her out cold the whole day, so deeply that a breathing tube will be doing the breathing for her.

She will also have a "central line" installed for the entire time she will be in the Cardiac ICU, which is an IV inserted into the jugular vein in her neck. That brought back visual images of my dad waiting for his liver transplant because he had the central line as well. I do remember that dad told me it wasn't painful, despite how disturbing and uncomfortable it looked. As for her recovery, she will be in the ICU and heavily sedated for a few days, with a nurse dedicated and in direct sight of her exclusively at all times. She then will be graduated to a general pediatric cardiac unit for about another week once she is deemed to be eating, breathing, etc. on her own. Once she is in the general unit and doing well we will bring up Brianna with Grandma Mimi for some joyful reunions. We hope if things are going well to bring Brianna to the New England Aquarium, the Children's Science Center and other tourist sites in the city.

After we left the hospital at 3:30 PM, we came back to the hotel and headed out to dinner. We found an IHOP nearby and I fed Maya exactly what I knew she would love, and as much as she wanted. When she saw the children's menu and we asked her to point to the picture of what she wanted, she got a mischevious look in her eyes and hit her palm on every item on the menu, one at a time, many times over as she laughed and we laughed hysterically. I ended up ordering her Double Blueberry Pancakes and a fruit cup. She ate quite a bit of them with various syrups, the strawberry seeming to be the best liked by her. She really loved the whipped cream as well.

After dinner we stopped at a market and I bought her milk and Fig Newtons
so that she could eat as much good (as in tasty) stuff as possible before her midnight cut-off time. It will seem like an eternity to her before she feels free and eats without pain or restrictions, so I wanted her to live it up.

So here are the pictures and movies of Maya from today-

Here is what the hospital looks like as you walk towards it from the garage

Maya getting ready for a chest x-ray

Exhausted Maya sneaks a nap

Maya tries on sunglasses to be funny at the hotel

Maya tries to fit her sunglasses on daddy

Maya plays while waiting at the hospital

Fast service! She is now scheduled for surgery next Thursday, the 31st.

Victoria was called by Boston Hospital with a date of July 31 for Maya's surgery. They want us there on the 30th. One week to prepare, man things are moving quickly! We were told to expect a 7-10 day recovery period, so I'll be loving that muddy water and Boston will be my home for nearly 2 weeks, and probably Victoria's for a good portion as well.

A plan to avoid Open-Heart Surgery provided by Boston!

Pre-anesthesia:

Natural nap while waiting her turn for the MRI machine (bumped by 2 emergency cases):

Recovery Room:

Yum - fruit cup before leaving the hospital!

I just received a call from the cardiologist in Boston that we are working with. She told me that Maya's Qp/Qs ratio is a combined total of from 1.8 to 2:1, with about 1.5 being from the anomalous vein, and the rest from the PDA. She reported that the surgeon who would be working on Maya planned on going in via a space between the left ribs and resection the vein onto a portion of the left atrium of the heart, all while it is beating! The cardiologist informed me that this method carries far less risk than being on heart-lung bypass.

So needless to say we are excited (I had to text-message the info to Victoria, who is giving testimony in a civil case today) and ready to go. It could be as soon as mid-August.

Heading in...




Ready to head home...


-Chris

Anticipating the Surgery Plan

It is now the evening before Maya gets her sedated Cardiac MRI, and Victoria and I get the Childrens Hospital of Boston evaluation and plan for treatment. We have already been told it is likely she will need open heart surgery due to the evidence that her right ventricle is enlarged. Their opinion is that any enlargement is evidence of a problem (excessive pressure) that must be corrected, as in opposition to the opinion of the cardiac staff in the Childrens Hospital of Philadelphia (albeit without Qp/Qs data that Boston noticed was missing from her report and had to request from her aborted catheter procedure at the Connecticut Children's Medical Center), who felt that her ventricular enlargement was "minimal" and "within normal range."

Victoria drove up earlier today to meet with the anesthesia staff, and I waited until after work to drive up. Victoria says that Maya was so excited and animated and gleefully squealing with the sights and sounds of the city. They were able to get some chinese food for dinner, and the restaurant was selling a large container of fresh watermelon chunks for $1.50, so Victoria bought them and Maya loved eating them. They then went for a swim in the pool and had a bath before Maya fell asleep.

Tomorrow AM will be very difficult for Maya (and for we who will be trying to distract her), as the requirement for sedation is no food past midnight tonight and only clear liquids until 9:30 AM tomorrow. The procedure will not begin until 11:30 AM minimum, and Maya loves her regular meals!

Brianna is staying with Grandma until Tuesday, and is looking forward to Maya having successful surgery and recuperation so they can each get a new kitten or perhaps a puppy if mommy's allergies permit.

More when we find out a plan and get a chance to digest the info...

Until then, here is recent video of Maya playing happily: