Wednesday, March 28, 2012

3 weeks out and doing great!

Bela has been doing pretty darn good. I'm amazed by her.. as usual. She dosn't want to be held back any longer! She begs me to go to the park, got to the store, get back to anything normal. We're taking it slow, but she's been out to the park a couple times when it's been not too busy and she's so happy to be sitting in the sand with her shovel in hand. Sometimes it's like she didn't skip a beat. She has times still though where she seems tired, or grumpy, or like something bothers her but she just can't quite tell what it is. But overall, oh my gosh! 3 weeks post-op and she's a rockstar! I'm just so darn proud of her, for doing something so hard and for coming out of it so well. She tells everyone that she just got her heart fixed and sometimes even shows them. I'm never quite sure how to react when she pulls her shirt right up. It's like she's actually almost proud of it, as she should be, but I cannot understand how at 4 she feels that way instead of just being plain old mad about it. We've talked with her a lot about it, so I hope she understands to the best of her little ability. Sometimes I think she understands it all better than I do! She's eating a little better this week too. The only thing not improving much is her sleep. She's up all night and moans and tosses and turns and climbs in bed with us and continues to moan and toss and turn. Last night I sorta lost some patience with it.. I love snuggling with her but I really don't sleep when she's in bed with me. But she gets so sad when I put her back in her own bed (which is about 2 feet away from mine). I think she's getting spoiled, but how do I not? I don't know what to do..hmm. Hopefully with a little more time she'll start sleeping more. For some crazy reason I'm still awake. Of course she's been sleeping great since 8...
I'm still just in utter and absolute shock and filled with joy that it's over. Anticipating this surgery was torture. Serious torture. I would lie awake and think about everything. I would remember her past surgeries and how tough they were then imagine this time around being so much harder. I'd worry about complications, I'd think of the worst case scenario. Then I'd tell myself to stop, breathe, and say a prayer to stop my crazy mind. It was hard in the hospital and there's been hard moments since, and people ask how I'm doing it, and I just want to make them understand that it dosn't really matter how hard it is, the happiness to have it over and done with a great outcome makes any hard day or moment okay. I don't think even in my wildest hopes and dreams I would've thought we'd be here 4 1/2 years ago. She was just considered too weak to survive. Everyone goes through hard things. Everyone. I was just talking to a dear friend today that is going through something hard. Completely different, but hard nonetheless.
I really believe that once everything is said and done and we go back to meet our Maker, that we will understand with perfect clarity how much were loved and looked after, and that everything we went through was for a very perfect and necessary reason. We will understand all the 'why's'. We will know we were never left alone. And above all, we will thank Him for it all. The test is to trust him while we are still here going through the day to day sometimes asking 'why'.

Thursday, March 15, 2012


It's been wonderful to be home.. It's just crazy to me that we are done with the Fontan. I can't say how amazing it feels to say that. It's hard to describe what it's like to wonder and worry and speculate and dread a surgery for 4 years. I had no idea what to expect since she was so little with her previous surgeries. And I can't believe 8 days later we were home. Done. It's DONE! Feels soooooo good.

The last few days have been a little rough for Bela. She is restless and uncomfortable most of the time. It's just going to take time. It's hard to be patient for her to come back to me because she was just too good before... I have to remind myself that it's only been 10 days. I just miss her.

She wants to be held and dosn't want to walk too much. She isn't sleeping too great either. She threw up a couple times yesterday but didn't throw up today at all. I think she just needs to get all the drugs out of her system. She got a ton. She's on a ton too, can't wait til some of these are gone! This is just her 9 pm meds. Her schedule is crazy again, but lots of these will be gone soon.

As far as her arm and hand, I am feeling very hopeful because we're seeing her use it more. Today she was able to make a thumbs up with it! Her NP was finally able to give us a possible cause.. she thinks it may be peripheral nerve damage from her arterial line. It's uncommon but can happen. All that matters is that it will come back to full function. Such a scare, but it's all going to turn out ok.

Her heart is being monitored 24/7 with a portable EKG monitor for the next 3 weeks because she was having some rhythm issues. I'll find out how she's doing when we have our first appointment on Tuesday.

It is so good for her to be home. The real healing and recovery happen at home. I am so happy that she can be back with Benson and Ruthie. She just needs to realize her happy little life will go on and I think she's going to be just fine. I love her to death, it's hard to see her struggling, especially since she was doing so stinkin good. But we'll get back to that girl, even if it takes a little while.

Thank you for your help getting through the last couple weeks. We are blessed with the most amazing family and friends. We've felt your love and are so grateful for it. Thank you from the bottom of our hearts.. especially Bela's. :)

Sunday, March 11, 2012

Fontan 9

What a difference a day makes.. especially around here.

She got her IV fluid turned off because we are feeding her through her Gtube now and she is keeping it all down. That was the last line that was connected so we were able to get rid of her IV pole and lines and pumps. This just makes it SO much easier for her to be mobile. Huge!

This morning about 10:00 the neuro doctor came in to tell us that her EEG looked perfect. Absolutely no sign of a stroke and no seizures. Yes yes yes yes yes! and a wahoo too! Can I even express the relief? She is still not using her left arm or hand, but he tested her arm for reflexes and hers were great. He believes it is nerve damage and she just has to regain full function through therapy. We've done that before, we can do that again. I know she'll be just fine, digging in the sand in no time.

She got her 'hat' off and all 50 probes that were on her head and we were able to go for another walk. She walked twice as far today. So proud of her. Her little legs got going so fast! She let us know when she was tired and we took another wagon ride.

Then we got more great news... her other chest tube was coming out!! We gave her some different meds and the removal of this one went so much better. It is out. Can I say that again? It is out! I can't believe it!!! 6 days post op... amazing.

We just finished washing her hair and all the goop from the EEG out. I massaged her head and we poured warm water over it and she loved every second of it. So good to do something that felt good for her. She is now sleeping in her daddy's arms.

Like I said... What a difference a day makes.


Saturday, March 10, 2012

My dearest Bela--

I was amazed by you when you were a baby. I've been amazing by you your entire life. But right now I've never been more amazed.

I keep reading these words from the talk The Atonement Covers All Pain,

"I have noted that children are often more naturally accepting of pain and suffering. They quietly endure with humility and meekness. I have felt a beautiful, sweet spirit surrounding these little ones."

This describes you so well. How many times I have wished that I could take this all from you. I try to stay strong when your eyes are looking into mine. When you fall asleep, I cry for the pain you are enduring, and the fear I see in your eyes. Even if someone comes in just to say hi, you do not take your eyes off them, with a nervous look wondering what they will do to you. You are comforted by me laying by you and when you feel my hand in yours. I am grateful I can help you through this in that tiny way..

I watch you endure this with such grace. You are nervous and scared, and sometimes cry, but overall you accept whatever they have to do to you with unbelievable strength and patience. I do not understand why you came in your body and have to go through so much to be on the earth. I do understand however, that you and I both chose this from the beginning. And I do know that we are not asked to go though it alone. Whenever I feel like it's too much, that's when I plead for strength to keep going. And I feel like the burden is lifted just enough, and I am given just enough help to go on. I know it is the same for you. We have to experience the pain and suffering life brings to learn and grow, but we get help when it's all just too much. When you are really really suffering, and I feel so hopeless, we are given a tender mercy. Two days ago when we were told to wait another 2 hours to get your PICC line and you were having such a hard time, I thought there was no way we would make it another 2 hours. You fell asleep for the first time in a day and a half and slept through the extra wait. I'm so grateful for those tender mercies.

Everyone has different trials. Yours is a fragile body and all that entails for you. Mine it seems, is to watch you as you endure it.

Elder Orson F. Whitney said: “No pain that we suffer, no trial that we experience is wasted. It ministers to our education, to the development of such qualities as patience, faith, fortitude, and humility. … It is through sorrow and suffering, toil and tribulation, that we gain the education that we come here to acquire.”

I'm so sorry for all of your suffering, but thank you for giving me the opportunity to develop patience, faith, fortitude, and humility. Thank you for helping us, your family, and others who know you gain what we came here to earth to acquire. You are my angel.



Fontan 8

An update... It's been hard to find a minute. To catch up from the last post... She had a good night that night after she got her PICC line in and was able to drink. She rested and drank all night...20 ounces of gatorade in one shift! She didn't wake up for the day yesterday until noon. She was sweet and quiet for awhile. She had a few bites of a pancake and some fruit loops...still didn't have a big appetite, but it was nice to see her eat anything at all for the first time. We got the update that we were going to be able to pull her left chest tube! I was SO excited for her.
Before getting her tube pulled.

Adult patients say that is the most painful part of all. She had only been taken off sedation for a few hours and finally perked up a little bit, so I was a little disappointed they had to give her something again to pull the tube that would take her away again. They suggested a med that would give her an amnesia like response and I felt wrong about it but after some debate I went against my feeling and said ok. I honestly think the hardest moments for me are when she is given a drug that affects her brain, those neuro drugs that make her eyes roll back and she dissapears somewhere for awhile. Her eyes were also shaking back and forth, it looked just like she was seizing. Dr.s said it was a normal response to the drug. Well I hate that drug then and NEVER again will she have it. They were able to pull her tube with minimal reaction from her, but that's even creepier to me. I know it's good to not give her anxiety, and I am grateful it wasn't painful for her, but to me it's worse to see her that way.

Anyway, once that was pulled out (all 18 inches of it wrapped up somewhere inside her chest) and she came back to, she immediatley perked up. She felt better from having it out, I could just see the relief in her face. PURE happiness for my heart! She gave us smiles, and oh they were amazing!!

One out, one to go!! Horray!

First smile after the tube came out. Best picture ever.

That was huge to get that out so soon. It means we are in the 25% that don't have bad drainage issues post Fontan. Another miracle and blessing. Her right side drained just a little too much in the last 24 hours to remove it. Maybe tomorrow. It is draining very little today.

She took another rest and then we were able to get her into that wagon and out of her bed.. It was GOING to happen! She needed to get out of bed. She was so sweet. She was so happy to be out of the room. We did one full lap around the unit, which took a while because she had a lot of gear to be careful with and drag along, and when we got back to her room she looked at me and whispered, 'more'. So sweet. I said, we're not done yet, she wants more! So we went for another lap and then she said all done.

First time out of bed.

She was tired. We got her in a clean bed, I read her some stories and laid next to her for a long time. Sweet moments with her. She even had some visitors and was happy and smiling. She fell asleep from 11-2, then was awake from 2-5:30 wanted to watch movies. Then slept some more this morning.

Her milrinone (IV heart med) was turned off this morning. That was the last IV med she was on.

Yesterday I noticed she didn't want to use her arms, especially her left arm. She is using her right arm a little but it is very uncoordinated and seems hard for her to move. She is not using her left arm at all. I notified the dr. last night. This morning during rounds we discussed that it was still not any better. So they ordered a stat CT scan. They were concerned about a possible stroke. It's been a scary morning. We went down immediatley to do it, I was so nervous. This is what we know so far...The neurologist told us that he did not see any sign of a stroke. But she has a little blood on the brain that didn't seem to be causing pressure or swelling, but could possibly be causing seizures. The blood is on the right side of the brain over the area that affects movement of the left arm. I'm grateful to rule out a stroke. If she is indeed having seizures and it is causing this, they will put her on a seizure medication until the blood goes away, but we still have no real answers. Right now she is getting hooked up to do a 24 hour EEG to measure her brain activity and watch for seizures. They want to see her brain activity during all stages of awake, light sleep, and deep sleep.

Heading down to do the CT scan this morning.

She is responsive and is able to shake her head yes or no to questions we ask her and laughs and smiles so that is great. She isnt talking a whole lot. This is one of those times that we're taking it a moment at a time. I feel like everything will be alright, I really do. I'm hoping it's just nerve damage or something and she just may need some therapy for awhile to get back to normal. I hope so. I am scared though. I am used to all sorts of heart issues, but not brain issues and it is frightening. She seems frightened too and that is the hardest part. She has scared eyes. There is so much being done to her. There is nothing I can say to her that she will understand. It is so hard. I'm so glad she had a few happy hours last night.

Getting her EEG.

Hopefully we will have more answers in the next 24 hours.

Today's update.. phew. All I can do is pray, pray, pray. Please continue to pray for her. Thank you all SO much for your love and support.

Thursday, March 8, 2012

Fontan 7

Finally something good for Bela! Can't tell you how good it felt to be able to tell her YES when she asked for a drink! She's been back from getting her PICC line for about 2 hours and has just been drinking and drinking the last hour. She keeps saying, a little more mommy.. So sweet. She's resting very peacefully now. Sigh.. The day is over. Now we can finally feed her tomorrow and let her be aw...ake. She might even get to take a wagon ride to the playroom if she is up to it. Thank you for your comments and prayers today...I can't tell you what they meant to me. I really can't. It was the toughest day yet, and i hope the toughest day she'll have. I think she is done with vomiting and the tremors and DONE with being NPO (food witheld). I would be miserable too if I hadn't eaten or drank since sunday. All I could think of was how thirsty I feel after one day of fasting and she had gone 5 and was told she couldn't drink for hours. She was so mad she even hit her daddy a couple times. He's the person she loves most in this world.. She was so upset. So hard.. Positive thoughts for sleep tonight so she's ready for a good day tomorrow! I know it will be.. Loves to you all and thank you for being there for us.
Tanner came to the hopsital from work.. it was the first time he had left her, but I called with a not so good update and he came right back. He is such a good daddy and a comfort to her. I just came back from leaving the room for the first time and took a little walk. Wow. I had lots of anxiety about this surgery and knew it was going to be tough but I had no idea. There is no way to prepare yourself to see your child suffer. And the worst part for me is being able to do nothing for her.

To go into a little more detail, now that Tanner is here trying to comfort Bela, she was awake from 3:30 a.m yesterday until about midnight last night. Then she slept very horribly off and on for the next 5 or so hours. Starting at about noon yesterday she started throwing up very forcefully. She got a lot of meds to try to help her but everything seemed to just make it worse. We were told to start a sedation med at 10:30 and I kept waiting for it to kick in. By 1 or so I asked to go up because it wasn't helping. She had periods where it seems like she might have been hallucinating they thought, and then her whole body would shake from pain. And all she wanted was a drink. And I couldn't give it to her. I was told to not give her any liquid because it would've made her throw up, but she was thrwoing up anyway. She would finally doze off then would quickly jerk herself upright all the sudden and scream out. At 5 a.m the nurse came in to check on her and realized the sedation med had never been connected to Bela. She hadn't been receiving it the whole time. I do not blame her.. I actually have no idea how that happened because the tube was clamped so the pump should have been beeping to let us know there was a problem. It never did. It took me a while to be over it, it was a mistake and it's okay, but it caused a lot of unecessary pain for Bela and it's hard to not think about that. When it started to kick in at 5, guess who came knocking.... stinkin xray lady. Who proceded to turn on all the lights, uncover her, lift her up to place the plate underneath her and totally make her upset again. Those are the moments in here where I want to yell at someone. I know they're just doing what they're told, but it is so hard to have been in here all night and watch what she went through and have someone pay that no attention at all. SO finally she slept a little this morning, but it only lasted a couple hours and she has been begging for a drink since about 8. She tries everything...'please, mommy, just a little bit'. I couldn't stand it anymore. I'm so glad Tanner is here now. We are almost to the time to send her to get her PICC line. It's another procedure under anesthesia so it kinda stinks, but she is still on too many meds and needs a more permanent line. We were hoping to have her off these meds but she still needs them. Once she comes back and wakes up we will try giving her small drinks and see if the vomiting will stop. I am so ready for this day to be over. She is the strongest little person I know and one day I hope to be able to tell her how completley amazing she is.