Sunday, September 27, 2009

Sunday update

Started at 210pm: Saturday night was peaceful for the most part. They increased her NG feedings twice. When they got to 15cc's, she threw up about an hour in so we reduced it. We (my requests and the intensivists agreeing) decided today to keep Zofran going around the clock as we push her feedings.

Her throat is very irritated due to the NG tube and intibation. They gave her some Tylenol to help with that. She is spitting her saliva instead of swallowing it because it hurts so bad, so I'm hoping she can get over that pain, poor princess.

Gabriella is getting depressed, so please pray for her spirits. She is a fighter, no doubt.... but she is already tired of the lack of communication and being in bed. She asks to get up to the bedside potty every time she wakes, and we take her. It is nice to get her muscles moving- or at least it makes me feel better.

There really isn't a hardcore or long term plan for this week. It is more a series of short term possibilities and baby steps. Tomorrow she will have a CT Scan done to look for bleeding. If all is clear, she will start a new and stronger anticoagulant Tuesday. This new one is injection, which Gabriella will HATE, and will last 3-6 months. They mentioned 'installing' a port into her leg that we can inject it through but I have yet to find out more about it tomorrow. Hopefully speech therapy will start tomorrow and we can get this swallow function evaluated. I would love to get her mouth moving and functioning with them.

Whether this clot breaks down or not, her function and speech will take work to regain. That area was damaged and it cannot just reverse. But with the reassignment of speech and movement I spoke about yesterday we can help her regain the lost abilities through therapy.

I left for a couple hours today to shower at the Ronald McDonald house, do some laundry and see PJ. My sister met me up there with him. He was so precious, rubbing my leg and arm and laying his head on me. He was full of energy, but as much as it was fantastic and fuel for my heart to be with my boy, it was equally as hard to think of what was and what now is. To see him running and playing and talking, knowing Gabriella can do none of that, was extremely difficult. But I was able to love on him and make him lunch and spend some short but quality time with him.

1030pm: We had lots of visitors so I am picking up this update where I left off. After I got back from the RMH and sent Paul to play with PJ, Gabriella started to get a slow flow of visitors. She was adorned with gifts and girly treasures. Each thing she got - she studied. She ran her fingers along the front of a book or down a Barbies hair. A friend played hand puppets with her, which made Gabriella smile. We blew bubbles and watched her kick her legs up to get them and bat at them with her hand. She opened her own goodie bag of items and she even raised her eyebrows in excitement when she discovered her Barbie can go in the bathtub with her. When Daddy got back from time with PJ, Gabriella easily showed him the goodies she got, pointing out the details she discovered when she got them. It was hard to be depressed with so many people visiting you and so many heartfelt gifts to surround her in bed.

Some little things she did today that were big in my book... she made a couple noises in place of her blank words which was very encouraging to me. She even made a sound much like 'uhn-uh' to say no to the nurse changing her feed. She had what looked to me like unconscious movements of her elbow when she was mad at the nurse or moving up in bed. She's engaging... and not giving up hope. I ask her to try and practice her words, and though her mouth never moves, I encourage her for the effort and tell her we can try again later.

We played hard today, and engaged for quite a while. It exhausted her, to the point of a headache, but I cannot regret it. It was awesome to see some of her excitement and feisty-ness. They will give her Tylenol every 4 hours all night to help curb that headache, and I am praying a combination of her much more peaceful rest and hard work will give her a calm night's sleep. Tomorrow will be a bigger day, having her CT scan and speech therapy. Of course, more love will come visit her throughout the day, and she sure loves it.

Gabriella is up to 20cc per hour of NG feeding, and tolerating them well. The Zofran seems to be working, but I had no doubts. I know firsthand how amazing that med is! They are slowly lowering her Dopamine and plan to restart her Atenelol soon. It is all a prioritized balance of brain and heart with her, and it seems the plan they have worked out for her meds is reasonable and cautious.

I am sorry it took so long to write today. I was gone with PJ most of her napping times, and the evening was filled with the amazing surprise of playtime. Though it is one of my top priorities to keep everyone updated in detail through my blog for both your concern and prayers, I much prefer blowing bubbles to typing. :) But I am sure you understand!

I can't thank all of you enough, for the messages, texts, emails, prayers, love and support. I tend to cope so much better when people are here. It almost is as if her condition doesn't negatively bother me as much when people are around, because the energy of love filters out the nightmare and I can only see positive. Nights and mornings seems to be hard emotionally on me, but as long as I am right by her I am ok. And seeing her look for me every time she looses track of me makes me feel loved and wanted and tells me I am doing something right in her eyes.

5 comments:

Briana McFarland said...

Hello, my name is Briana McFarland. I live in Seattle Washington. I heard your story from a friend at church. I have spent the better part of the evening reading your blog and praying for your family. Your faith truly is amazing. We will continue to pray and think of you during this hard time. God speed. The McFarlands

Megan@SortaCrunchy said...

I am so thankful that you had some moments of sunshine last night! I love the bubble blowing!! And so thankful you got to grab a shower and spend time with that sweet little brother. Thanks for taking the time to keep us updated, mama.

danielle said...

Sending you many prayers and hugs from Oklahoma!

The Simmons Family said...

I love that you are finding HOPE in the little things. Baby steps. Gabriella IS a DIVA and she will overcome this. Days in ICU will disappear. I'm glad they got you room at the RMH.

I think the flight arrangement story is AMAZING!!! Love that so many are willing to step up and help out.

Praying and thinking of you!

Wright Family said...

My name is Jen Wright, I found you on Owen's blogspot. My daughter has Hypoplastic Left Heart Syndrome and has gone through ther three heart surgeries. Just wanted you to know that I am praying for your little princess. My daughter, Carla, came home with a PIC line to administer antibiotics after her 2nd surgery. It wasn't bothersome to her and so much less painful than trying to give meds with a new shot every day. Take care and God bless. Jen Wright

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