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

And the pendulum swings the other way...

Today Victoria was contacted back by a cardiologist with the Boston Children's Hospital. Victoria sent over all of the information regarding Maya in our possession to request a consultation, as well as to set up an appointment to get a sedated Pulmonary MRI to measure the Qp/Qs ratio (quantity of pulmonary blood flow to systemic blood flow expressed as a ratio). In addition, we are requesting a further procedure called a bronchoscopy be done at the same time on the advice of pulmonology in Hartford, as well as by Dr. Flake in Philadelphia, with the purpose of determining if Maya has any constriction or rigidity in her bronchi, or if her Anomalous Pulmonary Vein is causing pressure on her lung(s).

The Boston cardiologist looked at all of Maya's reports, and actually called Hartford and requested additional data that was apparently not in the reports we brought to Philadelphia nor which we have ourselves. That data shows some sort of preliminary Qp/Qs pressure data that was measured or calculated during her Hartford catheter procedure. The cardiologist says that the data points to a ratio anywhere from 1.4:1 to over 2:1, and that the flow through the Anomalous Vein is very high, just as we were first told in Hartford. She says based on what she sees, she agrees with Hartford on the need for Open-Heart Surgery. The data from the cardiac MRI will quantify the ratio more definitively. So now we are just waiting for Boston's Pulmonary staff to agree on a date/time they can work with cardiology while Maya is sedated and get both tests/procedures at once. It should be soon.

So how has Maya been otherwise? She is walking like a champ now, and is on a temporary respite from her nearly constant sinus/ear/respiratory infections. It may just be a coincidence but after exhausting every antibiotic given to her, I decided to go old school herbal on her, old wives' tale style. I made a decoction of 1 big pot of water into which I put:
-Many old onion skins
-Many old garlic skins and cloves gone soft
-dried spearmint
-dried raspberry leaves
-dried dandelion root
-Dried Stinging Nettle
-a good amount of local honey

I simmered that 2.5 gallon pot down to 1 3/4 gallons or so, then put it into containers and refrigerated it. We give Maya this tea in a sippy cup as often as she'll take it, and we add 1/2 packet of Splenda, as the honey was not enough to mask all of the nasty tastes. She drinks it quite well, and has been symptom free for nearly a week, at the height of allergy season - put that in your pipe and smoke it, nay saying doctors and your supporters! In all fairness we have added liquid Claritin to the liquid Zyrtec we were giving her before, as we also have done with Brianna, although of course picky Brianna won't touch the tea. Brianna is still having asthma attacks. Score a big endorsement for the common immune-system bolstering herbs, I say!

So Maya still doesn't say much, but she has said "Anna" for Brianna, "dog" or "dog-dog" for dogs, "da-da" both for me and for any motorcycle she sees, as well as for any item she does not know a name for. It could be like a "What's that?" for her. Ma, or "Ma-ma" is the term she uses both for Victoria and any food item she desires (Freud, what would you say here?), and of course she is great at pointing and grunting for anything she wants or wants you to turn your attention towards.

She also climbs now, almost anything your average 3 year-old would. She is a dare-devil and will climb small chairs and rock them until she tips them over. She emerges from the wreckage unfazed and tries another daring act. She loves riding in the bicycle trailer, although she now pushes against Brianna to assert her independence and desire for more space. She will take out her helmet and put it on, then hand me or Victoria our helmet(s) when she is outside and wants a ride. When inside she will get me my shoes to indicate her desire to go for a ride.

She also smooches now - big open-mouthed kisses. I have a great photo of her smooching Austin at Tyler's birthday party, but I cannot find my card reader, so cannot get the pics onto the computer today, sorry. I hope these 2-week old videos will suffice for now.