Healing and adapting at home

Maya is doing fairly well at home. Victoria's mother, Deb, is staying with us and has been a great help with cooking, clothes, cleaning and caring for Maya. She will be staying for a while, ideally until Maya is off of the NG tube liquids and ready to return to school. We have not noticed any improvement in vocal quality yet, but she has a cold which is complicating speech, most likely. In any case we will probably be requesting speech therapy from the town to get her back on the right track when her chords are working again, or even if they don't get back full functioning we will request speech therapy to help her with alternative means of communicating. Right now she does great with pointing and some signing. She also understands pretty complex requests and complies very well, so no problems with comprehension.

We all have colds in the house now, with the exception of Victoria. That is ironic because Victoria has low white blood cell production which is being investigated and she is usually the first to get sick. She has been taking some new vitamins to boost her iron levels and overall health, so maybe they are making the difference for her. I have made a great batch of cold-killer tea and have been chugging it several times a day, and have also been giving it to Maya once a day via her pump, and I think we are doing better now. Deb has said she would drink the tea, but I think she, like Brianna, is avoiding it due to fear of what it must taste like. Those two are worse off than Maya and I, so despite the small sample size, I think that scientifically we can say that the tea helps. Several people have asked me for the recipe, so here it is:

Cold-killer Tea

Essential basics

• Large pot that holds 2 gallons or so. If you want less or don't have one that big, then use less ingredients accordingly.
• Jar of local honey (can be omitted for dietary reasons or for kids under 1 year old).
• 2 bulbs of garlic and as many old flaky skins from other garlics that you can find.
• Flaky skins from all of your onions, plus the outermost juicy layer of one decent-sized onion
• 1/2 cup thinly sliced ginger root

Helpful ingredients for added potency:

• 1/2 cup dried nettles (aka stinging nettles) or fresh (1 cup shredded) if you know how to pick them.
• 1/4 cup dried dandelion plant, or fresh (1/2 cup shredded) if you can get some free of lawn chemicals.
• 1 tablespoon dried licorice (not for pregnant women or those with heart conditions)
  
• 3/4 cup dried raspberry leaves, or 4-5 fresh leaves, shredded

Helpful ingredients for taste that also have cold-killer properties:

• 3-7 dried cinnamon sticks
• 1/2 cup dried spearmint or 1 cup fresh mint leaves shredded.

Helpful ingredients for hard core cold-killer tea that taste VERY bitter - beware:

• 1/2 cup dried mugwort (avoid if pregnant)
  
• 1/4 cup dried marshmallow root

Feel free to experiment with adding herbs that you have found to be helpful, just consult an herb guide to be sure they are not dangerous for any conditions you might have or to make sure they are safe for children if you are going to use the tea for a child.

Put everything in the pot (honey can be added when the water is hot to taste) and fill with water to within 1/2" or rim. Use high heat until it starts to boil while stirring in all ingredients until they are waterlogged and sink (skins and garlic may not ever sink), then reduce heat to slow simmer for 2-3 hours. Strain tea with fine mesh strainer or cheesecloth and drink some, store the rest in a refrigerator. Should last 2-3 weeks cold in containers. Drink at least 2 big cups a day, more if you can handle it and want max benefits. Also try to eat 1-2 cloves of garlic a day by holding your nose, chewing it up well, and chasing with juice.

We're home!

After a long ride on I-90 (for some reason traffic in early afternoon was crawling all the way from Boston to the CT border) we arrived home at about 5 PM today. Maya was so excited! She loves the comforts and routines of home. She walked around the yard and inspected her trees (lots of japanese beetle damage on the cherry trees), inspected the refrigerator and tried to snag blueberries (juicy fruits are a no-no), then decided she wanted dinner and tried heaving herself into her booster seat. It is great to see her home and happy.

We are getting used to the regular hydration bag/pump intervals and procedures. They are a hassle but not unbearable. Maya has gone, however, from being a good sleeper to a poor one, and we have her in a "pack n' play" in our room to closely monitor her and hopefully prevent another yank of her NG tube. If so it is a four hour minimum ordeal to get another reinserted at CCMC in Hartford. We were provided some cuffs designed to prevent her wrists from bending and to restrict her thumbs (imagine larger diameter toilet paper tubes made out of cast-like material that closes with Velcro™), which are supposed to prevent her from yanking the tube out, but I discovered tonight that she is like Houdini and handed one back to me three minutes after I put it in on her.

This morning Victoria observed a five year old boy brought into Maya's room for a few hours before his mother's beeper went off and nurses came and rushed him out as if he was on fire. Turns out he was awaiting a heart transplant and one came in. It is inspiring and heartbreaking to imagine the story of the donor and his/her family. I hope the boy does great and the other child lives on in him.

Our experiences with Maya in critical care facilities for children have been life altering. She has for the most part been the healthiest of the sick kids, and speaking with other families and hearing their stories has been humbling. Gratitude and compassion have grown strong in us as a result, and the experiences have made us better people, I feel, as a result of having our priorities reset. I personally have learned to be less judgmental of people who may be expressing anger or insensitivity or just plain aloofness. That may just be their defense mechanism for processing life and death experiences.

So while I hope very few of you ever have to experience such places where life and death are balanced on the point of a pin, if you do, remember to count your blessings and give gratitude for what you still have or what you did have, and do something according to your means and what feels right to help lower the suffering of others.

-Chris

What is it now, Thursday?

Today was fairly miserable. When Maya woke up, she had ripped out her NG (naso-gastro) tube and was really getting worse with a snotty nose. I also was feeling post-nasal drip coming on and I suppose the same allergin was getting us both. We had requested from the beginning that Maya be given Zyrtec or an equivalent, but it never happened.

Victoria was with Maya when they inserted a new tube. She came out with tears in her eyes (Victoria) and said it was horrible. When we asked what to do if she continued to rip it out while at home, we were told to get a new one installed at the CCMC in Hartford. That means a 4-hr. minimum trip each time. Not a viable option. We then tried to look for VNA's that would visit New Hartford and work with kids - Victoria called around all day and got nothin'. This leaves us in a big bind for daycare as well, because Maya cannot attend while needing fluid delivery, not even with the tube inserted while in daycare, due to the danger of it being ripped out while playing. We were told to get her in normal routines as soon as possible, but that cannot happen by any stretch of the imagination. We go back up in a few weeks for a reevaluation on the vocal chords, and in 3 weeks for an evaluation of the lung blebs, provided she has no colds from now until then - tough to meet, as she has a dripping nose now!

So we are pretty down right now, and hope to be home tomorrow after a night in which Maya DOES NOT remove her NG tube. And then we start a new lifestyle with Maya at home and needing lots of care without her friends.

Sorry for the depressing entry,

-Chris

Wednesday afternoon update

Chris here - Brianna and Victoria have gone down to eat lunch.  Maya is napping after a busy morning playing with Brianna, and then having her first fluid administered via her new Nasogastric tube.  It is a tube down her throat and directly into her stomach.  They apparently installed it early this morning before Brianna and I arrived at 9 AM.  She does not appear to be in much discomfort from it.  It is amazing what she is tolerating now!  She had 240cc of water injected over a 1 hour period into her stomach, and I had to walk around with her until it finished, then she fell asleep. 

Victoria and I were instructed by a representative from the company that produces the feeding bags and pumps on what to do with the home model, and how often new supplies would be delivered.  I asked the coordinating RN whether we would receive home assistance from a nurse, and was assured we would.  I also asked about school, knowing that they would not be allowed to work with her feeding tube (which is actually just for liquid, food is fine for her to eat normally).  I was told that most likely a nurse could go to her school when it was liquid time and administer it.  This is turning into a larger life-changing event than we had anticipated.  I hope her school will allow her to return, as she needs the interaction and normalcy of her friends.

Speaking of normalcy, the place in which Brianna and I stayed last night was one in which many distant families live for months at a time while a child is being cared for at the Children's Hospital of Boston.  Brianna and I saw 2 children with one of the rarest diseases in the world, Progeria, aka Hutchinson-Gilford Progeria syndrome.  According to wikipedia, only 48 children in the world currently have this condition, and we saw two and talked briefly with a South American family whose daughter was there with it.  I had prepped Brianna beforehand and she was polite and said 'Hello' to the girl that was in the common area when we went there to get some water.  I don't know if she was shy, unable to speak clearly or did not know english, but she sort of looked down and away when Brianna spoke to her, and the family tried to prompt her to speak, but I didn't hear anything more than perhaps a whisper.  It was so incredibly heart-rending to see the way this child looked.  She could have been 2 years old or 12, but she was less than 2 feet in stature, sitting in a high chair and had a wrist that looked like the wrist of a 100-year old, very bony, curled and thin.  I think that is perhaps the saddest disease in the world, where kids get all of the symptoms of old age while still babies.  It was so emotional for me that I cried in front of Brianna in our room and had a hard time explaining why.  We are so fortunate in that our family has repairable, minor issues compared to many others we have been crossing paths with.  A recurring lesson in this life is to show compassion wherever possible and express gratitude as strongly and as often as possible.

-Chris

Tuesday PM Update

It is 8:00pm on Tuesday night.  It has been an exhausting day.  Maya only had one hour long nap in the stroller today.  She just refused to give in.  She fell asleep an hour ago.  Luckily, the child life specialist was available to watch her, after she fell asleep while I went and got our clothes out of the dryer.  They have a patient/family laundry room, that has 2 washers and dryers and they were full, so I wanted to be sure I didn't tie anyone else up.  The biggest necessity in the wash today was Maya's favorite froggy blanket, that our friend June actually gave to Brianna for her birthday.  Maya just loves sleeping on it.  Yes on it, not under nor with it.  

So today, we had a consult with the speech pathologist, who determined that they needed to do a barium swallow study on Maya to determine exactly what consistency her beverages/ food needed to be in order for her not to aspirate them into her lungs.  (in lay man's terms, without them going down the wrong pipes)  

For the barium study, they had Maya sit in a carseat looking type seat, that was surrounding by xray equipment, so it gave the feeling of being in an enclosure with an open top, bottom and front.  Then, they brought out some different foods that had been mixed with the powdered barium.  (The purpose of the barium is to be able to watch the food/drinks on the xray while she swallows them to see which pipe it goes down)  They started with milk, that had been mixed to honey thickness using baby rice cereal.  She aspirated that.  Then they gave her some chocolate pudding, which she thoroughly enjoyed, and didn't want to stop eating.  She did not aspirate that.  Then it was baby banana food, which she aspirated.  Then they gave her some cream of wheat with granola, which she did not aspirate.  So in the end they told me that she could not have any foods that were thinner than pudding consistency.  I think they should have followed that statement with... until we determine a plan of action, which is what they meant but didn't state.  My reaction to that was that it was unacceptable to just feed my child foods that were thicker than pudding!  So they clarified that the "team" would meet to determine the plan of action.

In the meantime, Maya and I went back up to her room, then we went and put a load of clothes into the laundry, the soap dispenser ate my quarter and produced no soap, but some nice mother, who I overheard talking on the cell phone that her child's transplant was probably not successful, loaned me some soap.  Then Maya and I went back up to the room and ordered her food voucher for dinner.  This was something I only just learned about on day 6 in the hospital.  Apparently, instead of ordering food from the menu to be delivered to your child's room for them, you can instead order a food voucher, which is a $7.50 voucher that can be used in the cafeteria.  Had we known earlier, it would have saved us some hassle.  Anyway, so we took our voucher and went back to the laundry, after I got so excited to see that CVS had just got the new trash magazines in, and they were kind enough to give us more quarters.  We were fortunate, to arrive and find one of the two dryers unoccupied.  After laundry was switched, we headed to the cafe with the voucher.  Maya ate great, she longingly looked at my glass of ice water, and I felt somewhat guilty drinking it in front of her.  She pointed once, and I had to tell her no.  We were just finishing dinner, when I got a call on my cell phone from the floor nurse asking where we were and that the Surgeon was waiting to talk with me.  (only 1/2 hr ago, the same RN told me he was in a lengthy emergency surgery and wouldn't be free until tomorrow, which was why I had left.)  Maya got to finish the last bits of bananas and we briskly walked back to the floor.

The Surgeon and the RN practitioner for the floor shared with me that he had spoken with three ENTs, and the speech team, and that they feel that Maya has paresis, vs. paralysis of her left vocal cord.  They said paresis is temporary, where paralysis is not.  I asked how they determined that, and he shared it was b/c her vocal cord moved slightly vs. not at all.   He then shared that what needed to occur, was that Maya needed to have a feeding tube placed in her nose, so that we could give her proper hydration at home.  Yes, she is going to be leaving with a feeding tube that we will need to work.  The Surgeon said that he believed that the vocal cord will improve in a matter of weeks, although the Dr. yesterday said could be up to one year.  I will have to ferret out why the big disparity tomorrow.  They will show Chris and I how to work the feeding tube tomorrow, as well as install it.  The RN practitioner wanted to install it tonight, but I refused.  Maya was exhausted, as was I, and I was not in the mood to be shoving tubes down her nose at 8/9pm at night after a long day.  The Surgeon agreed.  The plan for tonight is to hook her up to some IV fluids via her IV in her neck, which is still good.  They are currently waiting for her to fall asleep (10pm now).

I had a nice surprise as I was beginning to write this blog entry, Chris and Brianna showed up.  Chris had gone back home today to get Brianna, and to take her to her Taekwondo class, as she needed some normalcy.  Brianna and Maya were very happy to see each other.  Maya even gave Brianna a hug.  Brianna did a Jedi Mind Trick on me, and got a vanilla pudding and graham crackers from the patient food center.  Maya and I rode the elevator down with Chris and  Brianna, and Maya started to cry when they left.

So I am exhausted, and still need to do some research before tomorrow.  Thank you all again for your thoughts and prayers. Love Victoria

Monday PM update

It is 5pm Monday night, and we had thought earlier in the day that we would be well on our way home at this point, but such is not the case.  We just had our ENT (Ear Nose Throat) consultation.  This came about b/c I was talking with the RN from our cardiologist's office about how well Maya was recovering.  She asked if I had any questions and I said sort of matter of factly, that Maya has been choking everyt

ime she drinks, and is that normal.  She said no it wasn't.  Then she asked us to have one of her nurses watch her drink, next time she takes a drink.  So then we followed Maya around like hawks, waiting and trying to get her to take a drink (For any of you who spend a lot of time with Maya, this is fairly amusing b/c Maya is ALWAYS thristly, and never refuses a drink), well she was not cooperating and a few hours late

r, she finally took a drink and choked.  They then had the surgeon who had performed the heart surgery talk to us.  He explained that they good news was that she was making some improvements in her sound generation, which 

leads him to believe this damage is temporary.  He then went on to say that the damage could have been caused one of two ways: 1. the breathing tube caused irritation 2. there is a nerve that surrounds the area around the PDA (area that he sutured shut during surgery), and that the stretching may have irritated the nerve. 

 

Fast forward to 4pm, and our ENT consultation.   They came in with a black instrument case, that resembled a trumpet case.  That was the "scope".  It is an instrument that has a camera and light on it, imagine a pirate's telescope, but on the end of the telescope is a piece of licorice lace, dangling down, with a light and camera built in

to the end of the licorice lace.  So Chris departed the room, since he had this scope procedure attempted on him, and didn't go through with it.  So I stayed and held Maya in the chair, while they navigated the licorice lace part of the scope down in her left nostril and down into her throat.  Maya cried, but really not that bad.  The end result of their scope was that Maya's left vocal cord is partially paralyzed.  This is what is causing her to choke on liquids, as it is seeping past the cords.   This is also what is causing the hoarse voi

ce, since the cord on the left cannot vibrate as it is suppose to.  What next?  The ENT told us that he thinks, since this is isolated to the left side, that it was probably caused during the surgery, by somehow stretching the nerve around the PDA.  He said that it is a common risk with thoracic surgery (not a risk with open-heart surgery, and had we known, maybe we would have gone for open heart, could of should of would of).  He then proceeded to say that there is no way to know if it is permanent until after a year, which means that this can last up to a year, this temporary damage.  He said the good news is that if it is permanent, they can do surgery that will move the left vocal cord into a place where she won't choke anymore.  He also said that after a few months, if she is not improving, they can inject some type of disolvable collagen that will move the left vocal cord over to improve th

e hoarseness and choking.  In the meantime, they want us to be evaluated by speech and pathology, and they want her to do a swallow study.  We are not sure whether this will be today or tomorrow.  In addition, speech will work with us to identify a new diet, as there will be some foods/beverages she cannot have.  They also said that she cannot drink thin liquids and there is a thickener that we can get to add to her beverages.  Lovely.

 

Well enough about the ENT stuff.  We also had 

our Pulmonology consult this morning, and we all agreed to not do the chest CAT scan until the 25th of August.  They assured us that there is nothing that can harm her between now and then, and that if they did the scan now, they would not be able to see what they need to due to post operative swelling in the chest cavity.  They couldn't really give us a reason for the blebs, but said that once they have a better picture of the lungs, they will be able to then determine what could be causing them and what next to do.  They did say that blebs are caused because of the lack of elasticity in the lung tissue, but that th

ey need to look at the lungs in their entirety to get the best story on what is going on.  The good news is that we were able to schedule her cardiac follow up for the same date, so that we don't have to make multiple trips here.  Although now that I am thinking about this, ENT wants a follow up in a month, and that is going to send us back her probably a week or two after that.  So end result is that we have not seen the last of Boston.  The good news is despite these weird other issues, Maya is recovering great.  She is running the halls, throughly enjoying the play room and the plethera of toys that is in the play room.  We did loose her roomate today, Natasha got to go home this afternoon, which they were very excited about.

 

Natasha peeks out from behind her curtains

That is all for now... Victoria

Some videos from Maya's heart surgery

Click on these if you want a timeline in video snapshots of her heart surgery and recovery at Boston Children's Hospital

Mommy walking in to see Maya in Cardiac ICU after surgery

That's all for tonight.  Maya was silly and happy tonight.  After Mommy, the grandmas and Brianna went to the hotel, she and I took a nap and then went down to the lobby and got food from Au Bon Pain, and Maya ate a whole fruit cup and 1/2 a yogurt.  She then played peek-a-boo spontaneously and laughed her butt off.  It was a good 1/2 hour of fun one on one play with her in a great mood.

Sunday after surgery

Maya is doing very well today.  She has continued visiting the play room and has shown very little in the way of pain.  She has not been eating much, but better than yesterday.  She was able to get blueberry pancakes this morning and seemed to enjoy them, she ate about 1/2 of a pancake.  We have met wonderful people from all over the world to talk to.  We did not realize that Boston Children's Hospital is the World premier hospital for children's cardiac procedures.

Bit of a hassle today though.  The doctor in charge of coordinating procedures for the cardiac team was trying to persuade us to wait a month before getting a CT scan on Maya's lungs.  I argued very strongly for her to have the scan done tomorrow, as the Pulmonology  doctor already agreed to.  It seems that coordination across disciplines is fair at best everywhere we have been.  The coordinator will talk to all involved and give us their decision later or tomorrow.  They'll be a fight on their hands if they don't agree to the CT scan before we leave!

Very soon big sister Brianna will arrive with both Grandma Mimi (Victoria's mom) and Grandma Dayle (my mom).  The timing kind of stinks as Maya is getting tired for a nap and both lunch and visitors will be arriving soon.  Oh well. More later...

-Chris

Saturday afternoon update

Maya is doing great.  She was given a cocktail of meds that made her seem really happy drunk, after which they removed her chest drainage tube.  She now has 2 IV sites left, one on left neck, one on left ankle, and that's it, except for monitor stickers/leads.  She has been playing and has even left the bed and gone for a walk to the play room.  Also, she was moved out of the ICU to the regular cardiac hall and her new room phone # is 617-355-3622.  We are not in the room now as Brianna's similarly-aged friend Natasha is her new roomie, and she has had a tough time sleeping and with pain, so we are all out of the room giving them quiet time.  Therefore no photos either, as the camera card reader is in the room, and I am not.

-Chris

Friday- Afternoon update

Maya has had a better afternoon.  She has been having some rest, they are keeping her on pain meds enough so she is more comfortable.  She was able to eat some chocolate ice cream and drink some milk too.  We are still in the ICU, and no word on if they are going to move her or not.  I am glad we are here.  They did however get her the bigger crib, which is nice.

The other new wrinkle, is that the surgeon who did the heart operation saw what he called "blebs" on her left lung when he was fixing the heart.  He said that they were only on about 5% of her lung, and dispersed equally over it.  Not that we understand what that means exactly.  A bleb, as it was explained to us is like a blister filled air sac that has thinner membranes than the rest of the lung tissue.  Chris had a consult with the Pulmonary Dr. on duty, and he agreed that further investigation is warranted and will try to arrange for a Monday AM CT scan.  We would like to leave either knowing what we need to do about these "blebs" and their total coverage area on both lungs, or that they are just a slight aberration that are not harmful in any way and can safely be monitored every few years.  There is surprisingly little information on these "blebs" in children on the internet, as most of the info is referring to adults with emphysema or some kind of lung cancer or disease, or that they have no known cause.

Friday am Update

It is 11:15am Friday morning-

Last night, Maya apparently had more "episodes". What I mean by
episode is that she would wake up, be ok for about 5 minutes, then get
a look of terror in her eyes, then she would cry, but you can't hear
it b/c she is still with larangitis from the breathing tube. Then her
heart rate goes up to 190+ (ok is around 130 or below)and her O2 sats
go down to 60 or lower (ok is 100-90). She then gets another dose of
morphine, the doses back off to sleep. According to Chris, who was in
the room with her last night, she had these every hour. I on the
other hand slept beautifully in the bed in the family sleep suite. I
went to bed around 9:30-10pm, and woke up at 7:30am, which I
desperately needed. I am feeling much better this morning. The
family sleep suite is located on the 6th floor of another building in
the hospital. There are I think 25 sleep rooms, which consist of a
twin bed, night stand, and phone. The sleep suite also has showers
and towels. As I mentioned before, those beds are on a lottery basis
for parents with children in the ICU only.

This morning update- Maya had a few more episodes, but within the last
hour, she has been awake and not crying, which is great, although I am
not sure if it is the sedative they just gave her so that they could
take her arterial line (IV in the wrist that monitors blood pressure),
and one IV in the foot. They also were able to give her a sponge
bath, change her diaper, and put on some PJs (amazingly, they were not
the typical clown pattern, but a comfy material with tigers on it.)
We got to speak with the cardiologist and ICU Dr. just now and they
are not yet ready to take her chest tube out, as they originally had
planned to do b/c she still has quite a bit of stuff coming out of
it. They were also giving her percussion treatments (yes, just what
it sounds like, they were beating on her back and chest), to get the
gunk in her lungs loose and moving. Apparently if she sits still too
much, she collects fluid and gunk (like my technical terms?), which is
obviously bad. They say that she is ready to go to the regular floor,
but that they have no open beds to move her too. We are obviously not
upset about that, because she gets more 1-1 from the RN.

New update- I actually started this blog around 9:30am, but keep
getting interupted. We ordered Maya some food (scrambled eggs, wheat
toast and fruit cup). The nurse moved Maya from the bed and into
Chris's lap. She tried a bite of eggs, but cried through it and
didn't want anything else to eat. Her and daddy are now sleeping in
the chair together and getting some needed rest.

I will finish now and send it before it becomes lunchtime! Thanks
again for all who have sent comments and their thoughts- Victoria

Chris Gorski
seekerhiker@hotmail.com

Friday AM update

It is 11:15am Friday morning-

Last night, Maya apparently had more "episodes".  What I mean by episode is that she would wake up, be ok for about 5 minutes, then get a look of terror in her eyes, then she would cry, but you can't hear it b/c she is still with larangitis from the breathing tube.  Then her heart rate goes up to 190+ (ok is around 130 or below)and her O2 sats go down to 60 or lower (ok is 100-90).  She then gets another dose of morphine, the doses back off to sleep.  According to Chris, who was in the room with her last night, she had these every hour.  I on the other hand slept beautifully in the bed in the family sleep suite.  I went to bed around 9:30-10pm, and woke up at 7:30am, which I desperately needed.  I am feeling much better this morning.  The family sleep suite is located on the 6th floor of another building in the hospital.  There are I think 25 sleep rooms, which consist of a twin bed, night stand, and phone.  The sleep suite also has showers and towels.  As I mentioned before, those beds are on a lottery basis for parents with children in the ICU only.

This morning update- Maya had a few more episodes, but within the last hour, she has been awake and not crying, which is great, although I am not sure if it is the sedative they just gave her so that they could take her arterial line (IV in the wrist that monitors blood pressure), and one IV in the foot.  They also were able to give her a sponge bath, change her diaper, and put on some PJs (amazingly, they were not the typical clown pattern, but a comfy material with tigers on it.)  We got to speak with the cardiologist and ICU Dr. just now and they are not yet ready to take her chest tube out, as they originally had planned to do b/c she still has quite a bit of stuff coming out of it.  They were also giving her percussion treatments (yes, just what it sounds like, they were beating on her back and chest), to get the gunk in her lungs loose and moving.  Apparently if she sits still too much, she collects fluid and gunk (like my technical terms?), which is obviously bad.  They say that she is ready to go to the regular floor, but that they have no open beds to move her too.  We are obviously not upset about that, because she gets more 1-1 from the RN.

New update- I actually started this blog around 9:30am, but keep getting interupted.  We ordered Maya some food (scrambled eggs, wheat toast and fruit cup).  The nurse moved Maya from the bed and into Chris's lap.  She tried a bite of eggs, but cried through it and didn't want anything else to eat.  Her and daddy are now sleeping in the chair together and getting some needed rest.

I will finish now and send it before it becomes lunchtime!  Thanks again for all who have sent comments and their thoughts- Victoria

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:

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.