Monday, October 19, 2009

Settling in

We got home last Thursday after a solid 3 weeks in the hospital. Coming 'home' was a bit different than a typical homecoming. We came home to my mom's house, where we were moving in to when this happened, where we to wait for Gabriella's new heart. Now, we live here and wait to be listed, again. She was supposed to be formally listed on October 15th for her heart, and now we patiently enjoy the time given to us without worrying every time the phone rings that it's time to go.

ETA Pictures added November 2009
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Precious moment for me. This was their first encounter in 3 weeks. And she was so proud to show off her Insuflon port in her belly!

We had a coming home dinner at Gabriella's Godmothers house. It was all decked out in Minnie Mouse and Princess decor. Gabriella (and mommy) were a bit overwhelmed after being sleep deprived and stuck in the hospital, but had such a great time seeing all of the cousins and family together. I think the best part was how her cousins (the little posse) just embraced and accepted her speech issues like it was nothing. No sympathy, no coddling, no issues whatsoever. It was wonderful, and such a refreshing thing to be reminded to embrace the differences in people and challenges of life.

ETA Pictures added November 2009
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Friday we started up at 8am with therapy evaluations. We had someone eval Gabriella for occupational and speech therapy. They are going to try and fit as much therapy into their schedule as possible. Since we get 60 days of therapy per calendar year, we are going to aim for a busy week of speech, and after the 1st of the year cut it back a bit to spread out the length of therapy we get. Also, by then, we should have Gabriella's IEP completed and an in-home tutor from the school system coming to work with her. Seems it is all falling into place!!! I got a call to schedule OT today but I want to wait for speech and do them together. Hopefully we will be on track with a new schedule by weeks end! Until then, we are doing lots of work at home.

Besides unpacking and moving our items into place, we had a relatively normal weekend. Grocery shopping, cooking meals (yay!) and a family birthday! My niece turned 19, and the poor girl got a bunch of kitchen stuff for her new place from me. Stinks being an adult.... sorry babygirl!

Sunday morning I took out her Lovenox port since the case worker never confirmed a home-health nurse to come over and help install a new one. I gave her a bath since she was free of it and let her go the whole day without being attached to something. We got home from my nieces birthday and put on a lidocane patch and set the timer for 45 minutes to let it sit before placing the new port. Sure enough, 27 minutes before I am due to insert the port, I get a call from an in-home nurse wanting to schedule to come out Monday and help me place the new port. Lovely. We talked a bit about it, and I had to do it on my own to get her the nighttime dose. I placed the new port by myself! So since it was already approved and covered by our insurance, she is going to come out the next 2 weeks of placing it to provide supervision and support. I need the reassurance I am doing it right, and also need some tips on easing Gabriella's fear. Her biggest fear is needles, and even though she will agree that it didn't hurt a bit because it was numb, it is still an emotionally trying experience for her. BUT it is better than 14 shots a week, and she knows that. That's the ONLY way we get her to calm enough for me to place it is to remind her she doesn't get all those shots.

Gabriella is- about 85% of the time- doing super well. She has much of her same-old Gabriella personality. I do find her from time to time a bit sad. Last Friday was the worst. I think being back at the same things, same toys, same activities, etc, makes her realize that she truly does have a handicap. It was easy to not realize it as much in the hospital when everything there was controlled and new. She learned the new things with her new setbacks in tow. But now she is facing familiar things with her new setback, and it upsets her. She gets sad, and you can see the true sadness, on occasion, in her face. Poor sweet baby girl, 4 years old, should not need to understand that level of sadness.

This Friday we go to see the Neurologist. He should be able to tell us approximately how long he wants her on the Lovenox injections, when he wants to do another MRI, and when he might clear her for bypass. Once he clears her for bypass, she can be listed for her new heart!!! Approving her for bypass is basically allowing her to have the surgery. As they remove her old heart and put the new one in, the time in between will consist of her body being supported by a bypass machine. Now that she had the stroke, she is not safe for this, but will be when we can get this clot broken up and her body stable again. He may say 6 weeks post-stoke and she can be cleared, all the way up to 6 months for her to get the full, aggressive treatment of Lovenox. I just need to pray God guides him to the best decision for Gabriella. Time is of the essence now, as her heart caused this stroke and could do it again, and as her heart could decline to that critical point at anytime.

All this talk of people getting H1N1 and Influenza A has me truly dedicated to keeping my kiddos inside. I need to keep Gabriella as healthy as humanly possible, which means massive amounts of sanitizer and limited trips out of the house. Her immunity is, by nature of her heart condition, a bit lower than normal... and then there is the risk of her getting sick and it harming her stable condition. If you happen to see me out and about, I'll be the mom who has the large bottle of sanitizer in the side pocket of her diaper bag like a walking sanitizer dispenser. Or the woman who goes through the drive-thru bank or drive-up pharmacy and cleans my hands after touching the transaction tube. Yeah, I'm one of those now..... lol. But you know some of you are too.... ;)

Hoping to post some pics this week! Be on the lookout!!!!

7 comments:

The Simmons Family said...

I'm so sorry that Gabriella is going through so much. Our prayers are with you all.. you know that!

People always joke me that I have my kids hooked up to an IV of hand sanitzer... even Owen asks for it. :) They're healthy and that's all that matters.

Glad you are home.

Anonymous said...

My name is Katie Columbia and I've been following Gabriella since her stroke. I have a son, Isaiah, that has a CHD called HLHS - he was basically born w/o the left side of his heart and has had 3 open heart surgeries. We started a non-profit org. called God's Special Little Hearts. We send out care packages to children that have a CHD. I would love to send Gabriella one if you e-mail me your address. My e-mail address is godsspecialhearts@hotmail.com Our website is www.GodsSpecialHearts.org if you'd like to read more about our work.

I can also add Gabriella to our online prayer list if you'd like. Just let me know.

Praying her clot dissolves soon and she is able to be listed for transplant. All in God's perfect timing!

Katie Columbia
carepage:IsaiahColumbia (HLHS,DORV,Post Glenn twice after failed Fontan-July'08)
www.GodsSpecialHearts.org

AilynRose said...

Welcome home! I am so happy that Gabriella is doing well. welcome to the home bound club....totally stinks but is so worth it! And, yes, I wash my hands after everything....I am the freak that washes down the whole cart at Target! So far so good here, no colds/bugs/flus. It's been hard on Camden but we find many things to do to keep our days busy.
You are doing a great job Kristi and Paul!

Aspiemom said...

I'm so happy that you're home and home you all stay H1N1-free...and that Gabriella is listed real soon!

Anonymous said...

I am so happy for your family. I hope Princess G continues to improve and that she is strong enough for surgery soon. Best of luck to your family. I will be watching your blog and praying for you.

Angies Support Team said...

Oh man It is so heart breaking to hear about Gabriella being sad. She is way too young to not be able to enjoy herself the way she wants. :[ It had me tearing up at school. But we all know that the Lord is going to use her in a way only He can. That gives us hope.
And do not worrie lol my mom walks around with the wipes and sanitizer. lol she has gotten me and my sister to have it at all times too. :] I am praying for you guys. I am so happy that you guys are home! :]

Heather said...

I'm THAT mom too...And we're not leaving the house anytime soon! Will keep you in our prayers, as always..

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