Monday, February 22, 2010

Close, but no cigar

Not today anyway. The plan, which I have not really discussed much for superstitious reasons, was to go home today. Beginning Saturday, M started having fussiness and abdominal.......issues (I'll spare you the details). The abdominal issues have resolved, the fussiness has escalated to epic proportions. A shunt tap today yielded results consistent with a shunt infection. An EEG revealed many sub-clinical seizures during the course of the test. Labs revealed a sudden, dramatic elevation of her liver enzymes. That's a lot of crap (for lack of a better word) to find the day you're supposed to be discharged after a two month stay in the hospital.

More tests, more discussion, pediatric hospitalist consult, blah blah blah. I spent the entire day preparing for the worst, but hoping for the best. We got it, the best that is, in the form of a severe bilateral ear infection. I know most people won't understand this, but I nearly jumped for joy when those words were uttered. Okay, yes, I feel terribly sad for M that she has to endure such pain, but seriously, an ear infection - that's so....NOTHING! This girl has had 14 brain surgeries in the past 4 months. She has had 3 brain hemorrhages. She has been in the hospital for 6 of her 7 months of life. An ear infection? We can oh so happily manage that!!

There is still that chance that she could have meningitis brewing again which would lead to the shunts being removed, ventriculostomies placed, antibiotics for two weeks, new shunts placed, etc. etc. Essentially, we would start over - AGAIN. Our neurosurgeon feels quite confident at this point that that's not the case. We sure as hell hope he's right!

As for the subclinical seizures, as many as she had today during her EEG could definitely cause irritability, confusion, and lethargy. The neurologist increased her Keppra and hopefully we will find a nice, stable dose for her.

M will get an abdominal CT tomorrow to rule out any liver problems or infections. As many VP shunts as she had fail and the 2 that were consecutively infected could mean that something is/has been brewing down there.

So, we're close - as Kevin says we're just "perfecting", tweaking things so that when we walk out of these doors we will have absolutely no reason to come back anytime soon.

Yesterday, we took E to the model railroad show in town. It was pretty incredible. What a fun (and expensive) hobby! He is a train junkie and enjoyed it so much. I think he really felt special that he got to have Mommy AND Daddy all to himself for a few hours. Truth be told, Mommy and Daddy enjoyed it quite a lot, too!! I so look forward to the day when we can do something with our entire family.

Last night I was pleasantly surprised to find new pictures of our beautiful, K, courtesy of the traveling Kyrgyz mamas. She's so big and still so bright and happy looking. She is one strong girl, I have no doubt about that.

Hopefully tomorrow brings good news for me to share. Sorry for all the picture-less posts lately. I can't upload here and I haven't been home for more than a few hours at a time this last week. Precious time that is best spent cuddling with a snuggly, silly, little monkey. I promise I'll catch up as soon as I can. :)

Wednesday, February 17, 2010

I Love My Village

In my last post I talked about villages, communities, other cultures who live to support each other. Even in our face-paced, selfish society, we have villages of our own. They are made up of friends, family members, congregations, coworkers, neighbors, and sometimes even complete strangers. Today I was reminded of that.

For the last 2 1/2 years I have been proud and blessed to be an employee of an incredible health care system. I enjoy my job, I have great respect for my employer, and I love my coworkers. Sure, we all have "those days", but for the most part, I don't have anything to complain about. Today, I was presented with another incredibly generous gift from team members throughout the health care system. Team members that I currently work with, used to work with and some whom I've never even met. I was reminded yet again that there are those in this world who are compassionate and inherintly good, unselfish people. THANK YOU!!

M returned to surgery this afternoon. I cannot tell you how many this is now in the last 2 months. This time she went 6 whole days - a new record! We are in limbo - it has been 2 months that we've been living apart, half of us in this hospital room, half of us at home and working. Yet, the world goes on around us. We've been living on one income since October and that causes a great deal of additional stress. We are at a point where we have to decide between paying the mortgage, buying food and diapers, or paying other bills. Today's gift has taken the burden off for a while longer and for that we are so grateful!

In talking with the Hospital Health Psychologist today(who apparently was sent to make sure I didn't need to go to the rubber room) I came to a conclusion. It's not only the fact that it's hard to be here, hard to watch M suffer over and over again, hard to have our family separated, hard to not know how long my job is going to be there waiting, hard to figure out where the money is going to come from; the lack of control is excruciating! I am, by nature, a control freak. I thrive on schedules and knowing what's going to happen when. I have NO CLUE what each day is going to bring. Will it bring seizures, toxic drug levels, another surgery, more scans, new medications, new nurses, new residents, new medical students. I have to tell M's story over and over and over again. I have to submit to others' ideas and probably the most exhausting, I have to fight every day to get people to listen to me and believe me when I tell them there is something wrong. I have to be my daugter's advocate because she can't do it for herself. I have zero privacy, strangers in and out all day and all night, a bathroom door that doesn't close tightly and definitely doesn't lock. I have to rush through a shower whenever a convenient moment presents (and some days it doesn't), rush down to get a bite to eat not when I'm hungry, but when the schedule allows. I know I could leave her with a nurse or a volunteer, but I choose not to. This is no way for a person to live, yet I feel I can't and shouldn't complain. I have to be grateful that we have such excellent care.

So, that's where I stand today - I'm frustrated, sad for my girl, but overwhelmed with gratitude for the generosity and compassion of others. I truly do love my village!!

Tuesday, February 16, 2010

Sorry for the delay

Thank you, Ann, for the gentle reminder that I've been too quiet these last few days. So, what's been going on?

We're still hanging in there. We're still a family separated; two of us 60 miles away and 1 of us 6000 miles away. We're getting by and maintaining a shred of sanity.

For the last almost eight weeks we've been blessed to have more prayers sent up and good wishes passed on than we could ever imagine. We've been blessed to have excellent doctors and supportive family and friends to see us through this. About a week ago, however, we were given an incredible gift. It's not often in our country that we see true compassion and unselfishness at work. In other countries we see it all the time. In the face of tragedy whole nations, communities, villages drop everything to come to the aid of their fellow man. It's not often in our society that people sacrifice for others with no expectations of receiving something in return. Sure, we talk about it a lot, but how many of us actually do it. That is exactly what has happened for our family. We have been touched by an angel - an individual with true unselfish compassion, an individual who dug deep and realized that when someone in your "village" needs help, you drop everything and come to their aid. We have received not only an amazing gift from this person (you know you are), but renewed faith and spirit at a time when both have been waning. "Thank You" seems insignificant, but I guess that's part of our "we must return the favor" mentality. Truth is, we can't possibly return this favor, we can only accept this amazing gift and say simply, publicly "THANK YOU FROM THE BOTTOM OF OUR HEARTS!"

M is doing well. We are out of the PICU and truth be told, I want to go back. I'm not comfortable on a regular floor. I miss our nurses, I miss having residents and doctors around all the time, I miss being able to get something done immediately instead of having to wait all day! I digress......It's been four days since her last surgery - a current record. She had an MRI, and dye study yesterday and her shunts appear to be functioning well at this time, with the exception of one trapped temporal horn. I won't go into detail, but my hydro parent readers get it. Not sure yet if there's going to be any intervention for that. Our neurosurgeon feels best at this time to let it go as long as it is not causing her problems. I think it IS causing problems, but that's a battle I will have to fight. He plans to possibly do a repeat dye study today through her other shunt just to ensure we get the whole picture before possibly starting to talk about going......H-O-M-E. She has had an extremely difficult time adjusting to the anti seizure medications. She's been pretty much sleeping nonstop. M still does not have use of her left arm/hand and her left leg is weak. She still needs a lot of "support" with eating as her sucking is poor. It's impossible to tell how things will pan out long term. She has been through so much this past 2 months.

E is continuing to be a trooper through all of this. He is definitely having some significant (new) insecurities. He cannot be left alone at all. You can't leave the room, go to the bathroom, take a shower, nothing. It has carried over into school where he launches into a complete meltdown if his teacher is out of sight. I feel so guilty and it breaks my heart that he feels like he's going to be left by any of his loved ones. I know he's resilient and in five years he won't even remember this, but right now, it's so hard to watch him struggle. Other than that, he is doing incredible with school and is learning more each day. He has starting pitting Mom and Dad against each other. Since we are all never home at the same time he will do something inappropriate, be reprimanded and chime in with "Oh, Daddy lets me do it." Yeah right! He had his neuropsych evaluations in January. He definitely has Sensory Processing Disorder and possibly ADHD, although I'm not a fan of the ADHD diagnosis - I think it's WAY overused (go ahead and flame me if you wish). I definitely see the SPD, and have since he came home almost 3 years ago, but he is also an almost 4 year old LITTLE BOY - they are supposed to be hyper and a little crazy! We have tools and resources available to work with him on his sensory issues, but as for medicating my 4 year old - ABSOLUTELY NOT - NO WAY,NO HOW!!

K is still hanging out at the BBH waiting for her family to come and rescue her. She received a very special visit this past week from 3 beautiful, talented waiting Kyrgyz mamas who travelled with the president of JCICS to Bishkek on Feb 5th. Their goal was to meet with as many government officials as possible to get our plight heard. They have been extremely successful! They have worked so hard for the children and waiting families and we are so grateful to them. February 15th was the "magic" day that Parliament was supposed to hear and vote on adoption legislation. It was the day we've been waiting for since oh, last fall. It went....nothing happened - BIG shock there (insert sarcasm). While I do have renewed faith that these adoptions will be completed....eventually, I am still frustrated to no end that "my" little girl has to sit and suffer.

So, that's it in a nutshell. We're hanging in there, waiting to all be healthy and home together again.

Thursday, February 11, 2010

Membranes, Adhesions and Shunts oh my

So, after a day of extreme fussiness, lethargy, seizures, EEG, CT scan, more fussiness, even more lethargy and a helping of bradycardia M's neurosurgeon decided to take her to surgery tonight instead of waiting until tomorrow morning.

His response to surgery is usually "it went great", "things look good", etc. Tonight his response was a tentative "it went....okay." Not good enough, but it's what we get this time. It seems my girl likes to quickly build up membranes and adhesions and close all of her little pathways off so her CSF cannot drain properly.

Ultimately, the surgeon felt his and her best option at this time was two shunts. Again, not ideal - 2 shunts means 2 more sources of potential complications. Hopefully this will be the answer for her, though.

For now, we wait, as always, to see if she develops problems or if....dare I say it....we actually get to go home soon.


...why can't she get a break? Back to surgery tomorrow..............

Wednesday, February 10, 2010

Surgery Number......

.....ugh - I can't count them anymore!

Anyway, M should be heading down to surgery within the next hour. I'm hoping with every part of my soul this is the last one for a very long time. I have to admit, I am N-E-R-V-O-U-S this time. After everything that has happened (i.e., gone wrong) over the last two months, fear is getting the best of me this morning.

There, I got that off my chest, now back to sending positive energy into the universe.

Saturday, February 6, 2010

What a difference a day makes!

Thursday & Friday

Leap forward, baby steps back

Good news is that M was extubated last night and handled it like a champ! She had a very brief period of difficulty, but then settled in and rested fairly comfortably. The bad news is that this incident has left her with some neurologic damage. She has lost a lot of function in her left arm/hand as well as her ability to suck. She is being tube fed and we are "practicing" a lot with the bottle. She is definitely interested, she just can't quite make it happen....yet. There is a possibility this is all transient and function could return. Only time will tell. She is not as interactive as she was before and I haven't been able to coax a smile out of her yet, but it is still early. The important thing is that she came back to us - that is all we have ever asked. We're really good at facing challenges and she is one tough, stubborn girl. We're hopeful that with intervention, therapies and a lot of hard work we'll make great strides.

Friday, February 5, 2010

Ghana Court Day

Shout out to blog buddy Michelle and super-husband Keith as they head to court today for the adoption of their beautiful daughters, B & V. Sending positive vibes to Ghana for the issuance of a full adoption decree today!

Thursday, February 4, 2010

In a (pea)nut shell....

So, our little peanut is holding her own. She spent 6 hours in the OR last night where her neurosurgeon successfully removed all of the blood and clots from her hemorrhage. She returned to the PICU intubated and on a ventillator. Today her lungs are "wet", so because of that and the fact that she underwent 2 rounds of anesthesia, throat surgery, 2 brain surgeries and had neurologic complications - all within the last 4 days, they opted to leave her on the vent for a day or two. M's neurosurgeon plans to replace the VA shunt as soon as she is stable enough for a return trip to the OR. God PLEASE let this be a successful, long-term placement!

Wednesday, February 3, 2010

Success short lived

I wish I was posting pictures of my happy, healthy girl, but she is in surgery right now. M suffered a significant hemorrhage in the left side of her brain. Her neurosurgeon is removing the blood, flushing her ventricles and placing another ventriculostomy (external shunt). Yes, we are starting over.

I'm tired and sad.

Surgical Success!

M's surgery went well. They were able to put in the VA shunt like we had hoped and her neurosurgeon is extremely pleased with how things went. Hopefully we can start celebrating weeks and possibly even months of shunt success.

The ENT found a very large cyst below M's vocal cords. He "de-roofed" it and hopefully it will heal down flat. Chances are she may need another procedure to take care of it for good, but this is a start. He expects she will have a marked improvement with her breathing as a result. Right now she has a horribly sore throat that is prohibiting her from eating much, but with rest and some steroids, it should heal relatively quickly.

We feel so blessed to have made it to this point. It has been a loooong, challenging couple of months. Hopefully we are one day closer to having our whole family home together again!

This entire experience has definitely changed us - for the better, I think. We have a renewed appreciation for life, our kids, our health, our jobs, everything we have. I have been overly sensitive (and pretty annoyed) lately about people who claim to be "sooo busy" all the time. I hate hearing people complain about working, not having enough money, and my pet peeve - people who complain about their kids! It's summed up well by something that my darling husband forwarded me this morning. It really touched me and reinforced what we've learned about the truly important things in life. Please read carefully and try to take it to heart:

Too many people put off something that brings them joy just because they haven't thought about it, don't have it on their schedule, didn't know it was coming or are too rigid to depart from their routine.

I got to thinking one day about all those people on the Titanic who passed up dessert at dinner that fateful night in an effort to cut back. From then on, I've tried to be a little more flexible.

How many women out there will eat at home because their husband didn't suggest going out to dinner until after something had been thawed? Does the word 'refrigeration' mean nothing to you?

How often have your kids dropped in to talk and sat in silence while you watched 'Jeopardy' on television?

I cannot count the times I called my sister and said, 'How about going to lunch in a half hour?' She would gas up and stammer, 'I can't. I have clothes on the line. My hair is dirty. I wish I had known yesterday, I had a late breakfast, It looks like rain'. And my personal favorite: 'It's Monday.' She died a few years ago. We never did have lunch together.

Because Americans cram so much into their lives, we tend to schedule our headaches. We live on a sparse diet of promises we make to ourselves when all the conditions are perfect!

We'll go back and visit the grandparents when we get Steve toilet-trained. We'll entertain when we replace the living-room carpet. We'll go on a second honeymoon when we get two more kids out of college.

Life has a way of accelerating as we get older. The days get shorter, and the list of promises to ourselves gets longer. One morning, we awaken, and all we have to show for our lives is a litany of 'I'm going to,' 'I plan on,' and 'Someday, when things are settled down a bit.'

When anyone calls my 'seize the moment' friend, she is open to adventure and available for trips. She keeps an open mind on new ideas. Her enthusiasm for life is contagious. You talk with her for five minutes, and you're ready to trade your bad feet for a pair of Rollerblades and skip an elevator for a bungee cord.

My lips have not touched ice cream in 10 years. I love ice cream. It's just that I might as well apply it directly to my stomach with a spatula and eliminate the digestive process. The other day, I stopped the car and bought a triple-decker. If my car had hit an iceberg on the way home, I would have died happy.

Now...go on and have a nice day. Do something you WANT to... not something on your SHOULD DO list. If you were going to die soon and had only one phone call you could make, who would you call and what would you say? And why are you waiting?

Have you ever watched kids playing on a merry go round or listened to the rain lapping on the ground? Ever followed a butterfly's erratic flight or gazed at the sun into the fading night? Do you run through each day on the fly? When you ask someone 'How are you?' Do you actually hear the reply?

When the day is done, do you lie in your bed with the next hundred chores running through your head? Ever told your child, 'We'll do it tomorrow.' And in your haste, not see his sorrow? Ever lost touch? Let a good friendship die? Just call to say 'Hi'?

When you worry and hurry through your day, it is like an unopened gift.... Thrown away.... Life is not a race. Take it slower. Hear the music before the song is over.

Tuesday, February 2, 2010

Surgery Day

M just went down for her hopefully uncomplicated VA Shunt placement. She's had 3 failures in 3 months so we're praying this is her last surgery for a long, long time. There is concern that due to her left-sided Hickman placement, she may not be able to get the VA.

He will then have no choice but to place another VP shunt. We really don't want that because chances are it will fail as the other 3 have. Her abdomen and liver just cannot handle the volume of drainage. Putting a VP back in feels like taking ten huge steps backward. I'm afraid we're going to end up back in this same spot in a week or so.

While she's in the OR today, she'll also be having a scope performed by ENT. Hopefully they can get to the bottom of her floppy airway and noisy breathing. Chances are it is all a result of her being on a ventilator for a month after she was born, being intubated so many times for surgery and it'll be something she will eventually grow out of. It'll be nice, though, to finally have an actual answer or at very least a theory.

Please lift up some prayers for our little fighter and her surgeons today.