Wednesday, August 29, 2007

Grandma



I know this blog is supposed to be about Baby Hearts Press, but everyone needs to know that BHP is a family-owned and run business. Therefore, if something is happening to a dear family member, it will affect the business. That is exactly what happened last week.

Last Wednesday, my grandmother went to the Emergency Room because she was having trouble breathing. She had already been diagnosed with atrial fibrillation and was on Coumadin, so we were already concerned about her. For months she has become increasingly more out of breath, but complaints to her doctor went unheard. Finally, fearing for her life, she called my father and he quickly went to her house to hand deliver her to the ER.

Meanwhile, my husband called down to the ER to let them know Grandma was on her way. We got VERY lucky. There was hardly anyone needing to be seen when she arrived, so we went straight back. I live only a few minutes from the hospital, so I met them there.

It didn't take long for the doctor to determine that Grandma was in congestive heart failure. Because of Alex's heart defect, I knew what that meant and was able to help Grandma anticipate what was coming next. I told her that when Alex's CHF was diagnosed, the first thing they did was put him on lasix. Not surprisingly, they did the same thing to Grandma. Then Grandma, just like Alex, was admitted to the hospital. It was kind of like deja vu.

For six days we watched, worried, prayed and stayed optimistic. Once the lasix started working, Grandma's sense of humor returned. She was the ideal patient. She gave blood without complaint and let them do whatever they felt they needed to do. She was as upbeat as she could be. I was proud to be her granddaughter.

The next major concern with Grandma was damage done to her kidneys because of the agressive lasix therapy. Grandma's kidneys were already starting to have problems and she was already being seen by nephrology, but now things became more critical. There was concern that she might have to go on dialysis. It was a wait-and-see game for a while -- something we parents of children with heart defects know all too well.

Yesterday the good news finally came: Grandma was doing better and could go home! Her kidneys were starting to heal and the doctors felt she would heal better at home. She was relieved, as were Dad and I. We couldn't wait to pack her up and take her where she belonged.

The last week was another good example of how families can pull together during a crisis. Frank was so wonderful about letting me be up there as much as I could. The boys took care of the kitchen and laundry. We all went to visit her one day as a family. I'd like to think that visit really cheered her up. Dad and I tried to manage the schedule so that somebody would be with Grandma at all times except when she was supposed to be sleeping. We had a workshop we had to go to on Saturday and my sister and niece drove all the way from Houston to spend Saturday with Grandma. It really was heartwarming to see how everyone pulled together to help Grandma as much as possible.

I think that all of us were better prepared with what to do because of Alex's stays in the hospital. We know what it's like to have a loved one in the hospital. We now know what to do to be a good advocate for the patient. Dad and I started a journal with information we were being given when we started getting conflicting information from some of the different individuals she was seeing (she was at a teaching hospital -- so she had a huge team of people overseeing her care). By the time Grandma left, everyone, including my sister and niece had taken a turn writing notes in Grandma's journal. I'd like to think that the consistency which we demanded helped her to get better faster.

No one lives forever, but we knew it wasn't Grandma's time to go yet. I'm going to include a picture of her playing pool at my house with the family. Usually she runs circles around everyone. She calls bingo twice a week at two different nursing homes where she volunteers. She belongs to her church's Altar Society. She is faithful about going to church every week -- and with getting her hair done once a week! :-) But she also has something very serious coming up which she didn't want to miss: my cousin is getting married in September. She has to dance at that wedding!

Thanks to all of you who knew what was happening to Grandma and took a moment to say a prayer for her. She's doing great and I might even have a picture to post of her dancing at C.J.'s wedding in the next month.

Anna

Wednesday, August 22, 2007

Hastings, San Francisco and Miami Conference



Greetings from Central Texas! I am so excited to be home! I have three different things I'd like to share.

Hastings

There is a bookstore in Killeen, Texas called Hastings which my dad visited. He brought copies of my books and asked if they would like to carry them since I am a local author. They very graciously agreed to carry them, so if anyone is looking for My Brother Needs an Operation or The Heart of a Mother in Central Texas, you can get them from that bookstore. They are in the Local Authors section right near the front of the store. Thanks, Hastings!

San Francisco:

We had a lovely week in San Francisco in August. We had a chance to visit with Nancy and J.D. McCain which was wonderful! J.D. is contributing an essay in the Grandfathers' Chapter of The Heart of a Father and we had some time to talk about his contribution over a nice lunch at Swiss Louis Restaurant. J.D. and Nancy McCain are responsible for many of the quilts that have been created for the Congenital Heart Defect Awareness Quilt Project. There will be a Quilt Show in Texas in the fall, so check back here for more information about that in the future!

In S.F. we visited Pier 39 (see pic above) and two different aquariums (see pic above). We also visited the wax museum, a couple of art museums, including the Legion of Honor and we also went to the Maritime Mueseum - which was really neat! The weather was cold (for a Texan - hence the jacket in the pictures), but we had two lovely, sunny days.

Miami Conference:

Things continue to progress regarding the Miami Conference. We might even have the brother of a boy with HLHS performing at the conference. He is a musical genius and has been featured on television and in some Florida newspaper articles. I'm eager to see how that works out.

I've been working on my keynote address and am excited by how it's coming together. It's hard to believe that Alex turned 13 on the eleventh of August. I'm now the mother of two teenagers. Alex wasn't expected to make it to age 5. To see that he's made it to 13 and is going strong is quite an accomplishment.

More to come soon!

Anna

Wednesday, August 1, 2007

Exciting News!

It's official! Today I received the faxed contract from Pepper Adair and I'll be speaking at the American Heart Association Heart Heroes conference on October 6, 2007. I'm very excited about that. Anyone from the Miami area who is interested in attending this conference, please let me know at jaworski@vvm.com and I will have an invitation sent to you. We need a headcount for the conference because, for one thing, a complimentary copy of The Heart of a Mother will be given to each family registered for the conference. And get this -- the cost of the conference to participants -- free! You can't beat that! There will be a number of excellent speakers discussing relevant topics for congenital heart defect families. Once I have the schedule, I'll post it to my website (www.babyheartspress.com).


(Alex on stage for spelling bee)


(Alex at the cookie walk)

I said I would write about Alex's Harry Potter experience. It was interesting. We went to the mall because Borders had a special extravaganza the whole night long. There was to be a spelling bee, a cookie walk, face painting, etc. Alex was very excited. Things didn't work out completely as planned, but the most important thing was that we got our books and got home by about 12:30. Alex, being much younger and more curious, stayed up until 8:30 a.m. reading the book. I had awakened around 7 a.m. to finish off where I started. I couldn't keep my eyes open past the second chapter. I was amazed to learn that Alex had already finished the book!

Alex was a perfect gentleman. He didn't let any of the information slip, but as soon as I finished reading the book, we hid out in Frank's office with the door closed so we could discuss the details. Frank and Joey finished the book within a couple of days and now we're free to talk about whatever we want to -- except with certain friends who aren't quite as voracious in their reading as the Jaworski family is.

More exciting news: we've planned a trip to San Francisco and are eager to catch up with some other heart family friends we know there. Plus, this is the first time for the boys to visit the city. We're planning on going on the trolley, visiting Alcatraz, walking along the pier, touring the Ghirardelli Chocolate Factory and viewing the Golden Gate Bridge at sunset. We can't wait! Alex is excited about visiting Chinatown where he hopes to find a cool Chinese dragon to add to his collection. The boys are also looking forward to authentic Chinese cuisine.

Last bit of news:

I was finally able to get in touch with the lab which did Alex's last blood draw and . . . 146,000 platelet count! In fact it was so close to normal, that's why they never called or emailed me! I'm so relieved. I don't know why Alex had that extreme dip in his platelet count earlier this year, but I'm hopeful that now his count is normal again, we can decide what the next best course of action for Alex will be. More on that once I have some answers.

Sincerely,

Anna Jaworski