Thursday, January 20, 2011

Mommy Madness Blog Hop - Mommy Time

I am participating in the Mommy Madness Friday Blog Hop this week!  I figured doing a few blog hops may get me posting a bit more frequently and diversify the posts a bit.  So, this week's theme for the Blog Hop is "Mommy Time" or what I do to escape the madness.  I don't do anything really specific (and let's face facts, I often do not escape the madness - I embrace it), but I do like watching TV.  My favorite shows are what my friend calls "Murder, Death, Kill" shows - Law and Order, CSI, NCSI.  But, I also like The Good Wife, Glee, Parenthood, Modern Family and The Middle.  I have become addicted to my DVR since I can't predict when I'll be able to watch TV.  I also like to read mysteries (some more murder, death, kill).  In addition, I am a member of Chico Mothers Club and I like the monthly Bunco games and the monthly socials.  So nice to get away, but still be able to talk about your kid(s) with people who know the realities! 

I do think that Mommy Time is important, but I also find that Bean is a stress reliever for me in some ways.  Its hard to be stressed out and upset when she does her goofy "beeeeees" instead of please or her elephant noise accompanied by her arm lifting like a trunk.  She's just too cute!  So, although she sometimes drives me mad, she also can be a great mood-lifter!

2011 - Year of the Zero?

The year has been off to a busy start (what else kind of life is there?), but a good one.  Yesterday was Bean's first biopsy of 2011 and although the day was a long and totally frustrating one, the results were well worth it - a ZERO!!!  Its only her second zero since she got her transplant and we're very, very happy to have it.  But, it came after a long, long day.

Originally, we were scheduled for the first case in the Cath Lab (the picture on this page looks almost exactly like the one at Stanford).  But, five days ago they called to say that a baby had been born who was going to need to go in first thing in the morning - at only five days old.  So, we got pushed back from 8 a.m. to 11 a.m., which meant we could sleep in a little longer (originally, we would have to be there at 6:30 a.m., but now we had until 9:30 a.m.).  We arrived at 9:20 a.m., with Bean having not had a bottle or any food since around 10 p.m. the night before.  She doesn't really like juice or water much, so she had a very small amount of water that morning, but we were told to not give her anything after 8 a.m.  She was in pretty decent spirits until we got back to the pre-op examination room.  She has become more and more agitated each time and now she starts to get upset as soon as we get in the room.  She doesn't like being hooked up to the monitors (they will usually put her on a pulse-ox, take her blood pressure, listen to her heart and lungs and take her temp) so she just cries and fusses the whole time.  This nurse only made her do the pulse-ox because she was so agitated.  She tried to listen to her heart and lungs, but she was pretty much screaming the whole time.  We then went to the pre-op waiting room where there is a TV and some toys.  She was once again in pretty good spirits...then Nancy from the transplant team came and wanted to listen to her heart, etc. and she once again lost it.  But, Nancy has a Mickey Mouse watch that plays "Its a Small World After All" that Bean loves, so that distracted her enough to allow Nancy to listen.  She said she sounded good.  We once again returned to the waiting room.  We sat there for about 30 minutes before someone finally came and got us and took us to the pre-op prep room.

The pre-op prep room has a bunch of gurneys and any pre-op meds are given here and the anesthesia team comes and gets the patients from here to take them to their operating rooms.   So, we settled in here, trying to keep Bean's mind off of her "bah" (bottle) that she kept asking for all morning.  We watched some TV, we played with her puzzles, we looked at a book...but, she was obviously not the happiest person.  We waited a long while...the nurse finally came over and said that she had a call in to Mary (the cath lab manager/nurse) to see what was happening.  It was around noon when the nurse came with Bean's Versed (a drug that helps the patient to relax and supposedly allows them to forget what happens in the procedure).  She got loopy, she got very unbalanced, she hit her head on the crib gurney bars a couple of times, did some funny stuff...but, we continued to wait and wait (usually verced is given about 10-15 minutes before they come to get her).  The versed started to wear off about 45 minutes later and she started to get super agitated.  It was really stressful.  We found out about 40 minutes into the versed that the first case (the five day old baby) had taken longer than they thought and now they had an emergency case from the Third Floor PICU that needed to be done.

This is, of course, frustrating.  After all, you can't very well explain to a 23 month old why they are not being fed, why they are starting to feel overly tired and agitated and why they are going to have to continue to feel that way while being stuck in a crib gurney.  But, who do you get angry with?  The five day old who needed to have a heart cath?  The kid from the PICU who needed some emergency procedure (which, by the way, Bean was three times while in the hospital)?  The cath team, who obviously have a lot to deal with...much of it life and death situations?  There is no one to be angry with, no one to be mad at.  Only non-directed frustration with no chance of yelling at someone making you feel any better.  Bean finally fell asleep about an hour and 10 minutes after the Versed.  They came and got her about 2:15 or so and since she was sleeping, they didn't give her another dose of versed.  She woke up while being wheeled to the cath lab (which is a long trip down a hallway between the Children's Hospital and the main hospital), so I carried her the rest of the way.  We then gowned up and I took her in, put her on the table and held her while they put all the wires on her and put the mask on her - which she hates.  But, she falls asleep pretty fast after they start the anesthesia...thank goodness! On an interesting side note, they had "flavored" anesthesia, so the stuff coming through the mask smelled and I guess tasted like Caramel.  When she started to relax and stop crying, Bean tried to lick the mask!  :)

We had not eaten at all that morning, thinking we would be able to grab something around 11 a.m. so both J and I were starving!  We went across the street to the California Cafe to eat.  We thought it would be 30-45 minutes before we would hear anything.  The phone rang about 25 minutes later and I must admit that my heart jumped a bit...why would they be calling so soon?  But, the woman who manages the surgery waiting room for the Children's Hospital, Pam, is wonderful and immediately said, "Everything is fine - she's fine, but the doctor wanted me to let you know she was done and all went well.  Take your time as she will be asleep for a little while."  So, we quickly finished our meals and headed back over and once again, we hurried up and waited.  We sat in the waiting room for about 15-20 minutes and then were called back to the recovery room.  Bean was still asleep (thankfully), but had woken up and already tried to rip out her IV (the reason I was thankful she was asleep - she REALLY hates to have IVs in).  Our nurse was awesome and Bean slept right up until just before the Echo person came.  We made her a bottle and she sucked it down while getting the echo done.  It was about the calmest echo for her I've seen since she got out of the hospital.  She usually wants to grab the person's hands and push the echo wand around and roll away from their exam.  But, she was so hungry she just laid there and ate! 

Once the echo was done and read, the nurse cleared us for release and took the IV out and disconnected all the tubes.  We got Bean dressed and headed out, approximately 8 hours after we arrived.  Sigh...but, we were able to get home to Chico by 11 p.m. and Bean slept great last night and has been great today.  Her neck (where they went in for the biopsy) looks great - just a little scratch mark where they went in and a slight bruise around it.  She went to playgroup today and had a great time!  And this afternoon we got the call that her biopsy was a zero.  It made our day!  Not that there is a big difference between a zero and a 1A, but it was beginning to feel like we were on a road of rejection and we weren't going to be able to get off.  So, now I feel like we've at least found an exit and are headed in the right direction. 

We have to go in for a clinic visit in six weeks, we have an endocrinologist visit around that same time to get her checked because of some breast tissue growth and her fontanel is still pretty open considering her age.  We'll have another biopsy in three months and if that is another zero we get to go four months without a biopsy!  Which will be just in time for her annual biopsy.  Crazy to think that two years since transplant is that close!  It has been a whirlwind of a year and a half.  I still feel like I'm just figuring out what I'm doing!  And I only sometimes feel like I'm figuring it out!

So, things are a bit less tense now.  We have hopefully figured out the right med levels and Bean's body is being more accepting of her heart.  I still will not feel completely comfortable until we get another zero, since she has had one a while back, but immediately went back to the 1A status with the next biopsy.  And although I know that the zero to 1A distinction is pretty small, it just feels better to have a zero! 

Bean and J are taking a road trip together to visit his parents tomorrow.  I will be at home, prepping for the new semester, trying to get the house cleaned up and organized for the new semester and doing a little bit of R&R before things really kick in with classes, tournament travel (almost every weekend for the months of February and March), and the Bean.  It will be nice to have a few days of time to clean without risk of it being made a mess seconds later, to work without dealing with "bah" requests, dirty diapers and just general necessary Bean entertainment, and being able to leave the house with just a purse!  But, I will miss her a ton (and J a little too).  I feel like I miss something precious every day I'm not around her.   She really is a bright spot in my life and I'm so very thankful to have her and to have her healthy! 

I know not everyone's 2011 is looking as good at this point.  My thoughts and prayers go out to those families who have children in the hospital currently.  Please do the same if you are lucky enough to have kids at home who are healthy!  Thanks for reading!

Saturday, January 1, 2011

2010 Recap Carnival - First Lines of First Posts

I have been motivated to do a little recapping of 2010 - using the method introduced by Musings of a Housewife.  I am taking the first line or two from the first post in each month of 2010.  If I think its interesting enough, I will include a little additional information.  2010 here we come:

January:  While staying at the Ronald McDonald House this summer, we met a variety of families who had children with a variety of conditions, and none of them are easy to handle.  But, the ones that struck me as the most unfair were those children who had gone through cancer and all the corresponding harshness of chemotherapy, only to find out that the very same drug concoctions that had saved their precious lives had caused their hearts to enlarge and stop functioning correctly.

Modern medicine is fantastic in so many ways, but still has many drawbacks with all the side effects.  Its a scary proposition when you have a child on multiple drugs with multiple side effects.  I did read online from a doctor that one of the reasons they switched from single immunosuppressants to a combination of two or three immunosuppressants was to cut down on the side effects from high doses of the one - but just like with chemo medicine - there are great and necessary benefits, but also horrible and scary drawbacks.  Nothing is perfect...

February: Over at CHD-UK there will be a great series of blog posts celebrating stories of individuals who have experienced congenital heart defects.  The first story is truly inspirational - a man who came back from near-death and heart surgery to complete an Iron Man Triathlon!

This post reminds me that I need to get on writing letters to city and county officials about declaring a CHD recognition day in February.  Good reminder...

March: Today I have a special blog entry!  I am reviewing a great new children's book called Danny the Dragon "Meets Jimmy" by Tina Turbin and illustrated by Aija Jasuna.  The book is about a little boy Jimmy who finds a special shell at the beach and brings it home.  Soon after getting the shell home, Danny the Dragon pops out of the shell with "bright red shoes," "a yellow backpack," and wings!

An awesome book that Bean loves looking at, even though she is not patient enough yet to let me read it to her in totality.

April: This was posted on one of the listservs I am a member of and I thought it was cute.  Not sure who should get the credit for it, but thought it was worth sharing and works well with my Thankful Thursday post:

The post was a job advertisement for a parent - very cute and very true to life!

May: So, I thought it would be interesting to look back over our Carepages and see where we were a year ago today.  Interesting entry - Mackenzie was still in the hospital from her FIRST stay (a week at our local hospital with what was thought to be RSV, then transferred to Sacramento's Sutter, where her enlarged heart was discovered, so after a week she was transferred to Stanford's Lucille Packard), and had just been moved to the infamous "3rd Floor" where the non-ICU patients go (sometimes called the "step-down" floor".

'Nuf said!

June: We got great news yesterday!  Bean's latest biopsy came back a zero for rejection!

Only zero since the transplant, so I will relish it a bit.  It doesn't seem like it was that long ago, but it also seems like it was forever ago.  I distinctly remember thinking that we had it all figured out and would have zeroes from there on out...but, no.  Its been the only one.

July: I didn't write a thing in July.  That is kind of sad.  I wasn't even working as an excuse.  Oh well...

August:  And to that I say "bleh" - which is what it looks like Bean is saying in this picture!  Sorry I've been out of touch for the summer, but it was quite an adventure with my husband being gone for six weeks, a two week trip to AZ (half way through which my husband joined us), and just a lot of chaos in my life and schedule! 

And there is my excuse for the lack of posting in July and no posts until the middle of August.  The "bleh" is referring to Bean's annual cath which was scheduled for the next day.

September: Some refer to today as Black Friday, but since my days as a retail clerk, I refuse to participate in the shopping extravaganza.  So, to me, today is the day after Thanksgiving - or leftovers day!

October:  Health care is obviously a big concern to me and my family.  We no longer have the option to be unaware or nonchalant about that part of our lives.

A post about health care and some things that were unknown to me prior to reading this doctor's blog post.

November: Just thought I would share a few of our highlights from Halloween!  We celebrated the whole weekend, with Bean's Grandma and Grandpa from Bakersfield in town.

That was a GREAT weekend.  I really enjoyed Halloween this year!

December:  I try not to look too far in the future when worrying as there is plenty to worry about on a day-to-day basis, let alone worrying about things that might or might not happen years down the line. But, I must say that every once in while an email thread on one of the CHD or transplant parent lists I'm on will start some future-focused worry.

And ending on a worrying note...appropriate I guess.  Its always there...underlying everything.  But, there is also a ton of good in these blog posts.

The year ahead - who knows what it holds?  I hope to blog more regularly here and definitely don't want to have a month with NO posts next year!  But, we shall see!  I wish you all a Happy New Year!

And, Six Years Later - Marking the Good Times

Hello!  Long time no write on this blog.  I have always included a link to this blog on my email signature to keep people reading Bean...