27 November 2013

~Happy 6th Birthday Boys~

It's been 6 years of birthdays with out Brady here to celebrate them with Liam. It's been 6 years of moments that we look around and think that there should be two boys right now giggling, splashing, or cuddling with.  It's been 6 years of trying to heal from the day we got to meet Brady but then said goodbye just one short day later. It's been 6 years of trying to honor Liam's birth day and not be sad that Brady isn't here to celebrate his special day too.

Job 7:11 Therefore I will not refrain my mouth; I will speak in the anguish of my spirit; I will complain in the bitterness of my soul.

This date is bittersweet for so many reasons. But one of the most important things it does do is remind me that no matter how difficult things are, I would never trade the hard days we go through if it meant not having Liam at all. The cost has been high, but the trade-off would have been worse.

I can't think back to Liam's birth day with out rehashing the grief that the day brings, the knowledge that there is an empty spot at the table where Brady should be. But I also can't think back without being grateful because it's the day that brought Liam to us. It's the day we get to celebrate Liam growing another year older. Brady didn't get that chance. Those boys, this day, are inexorably linked and it makes for the bittersweet day it always is.

Proverbs 27:7 But to a hungry soul, every bitter thing is sweet.

My soul, however downcast, always sees the extraordinary brilliance of a plan greater than my own, where one day we will all see Brady again. We will all get to marvel at the joy of his soul and be grateful for the heartaches he got to leave behind when he left this earth. He never had to know the pains we experience and for that I am eternally grateful. We will see him again.

We celebrated the day with cupcakes and presents and got our hearts filled with joy watching Liam crack up to his new Mickey.

Lookin' fly when I picked him up from school.

Mickey is hilarious!!

You can see how thrilled he is about the cupcake. Umm no.

So, happy birthday my sweet boys. It's been 6 years of crazy and I am so thankful to have been a part of it. I love you both more than words can say.

2 Samuel 12:19-23 When David saw his servants whispering, he knew that the baby was dead. So he asked them, “Is the baby dead?” They answered, “Yes, he is dead.” Then David got up from the floor, washed himself, put lotions on, and changed his clothes. Then he went into the Lord’s house to worship. After that, he went home and asked for something to eat. His servants gave him some food, and he ate. David’s servants said to him, “Why are you doing this? When the baby was still alive, you fasted and you cried. Now that the baby is dead, you get up and eat food.” David said, “While the baby was still alive, I fasted, and I cried. I thought, ‘Who knows? Maybe the Lord will feel sorry for me and let the baby live.’  But now that the baby is dead, why should I fast? I can’t bring him back to life. Someday I will go to him, but he cannot come back to me.”

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22 November 2013

In Honor of Brady

To know that someone was blessed simply because my child existed is an emotion that I can't quite explain.

Kate is a mom who grieves over her lost son and the might have's and what could have been's. She sees in Liam what might have been if her son survived and she sees in Brady the loss she shares with her son Roscoe. We connected last year through my blog and this sweet woman gave a beautiful donation to Liam for his stem cell treatment in honor of Roscoe.

This year a friend of hers left random acts of kindness envelopes all over their town in honor of Roscoe and his birthday. Kate decided to spread the love further and on her birthday she put random acts of kindness envelopes, one for every year she's been alive, through out her town in honor of the lost babies she has come to know through the death of Roscoe.

She sent me this picture of an envelope left in Brady's name at a gas station.

The envelope says:
Random Act of Kindness
Have a gallon on me!

I am truly at a loss for what to say to such sweet, sweet generosity in the name of my son.  This person will never know who Brady is, how important he is to our family, and how much we miss him. But this person was blessed because Brady existed. To know that my son inspired such a generous idea is precious to me.

Thank you, Kate, for blessing me through your loss and blessing others through Brady.  You are an amazing woman and your heart and your love of Roscoe will continue to inspire and to bless others. Kate, you inspire me. My prayer is that my journey would do the same for others. <3 br="">
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06 November 2013

Lessons Learned

A host of missteps led to Liam being in the ER for over 6 hours last week. Simply because of a pulled g-tube.  I've learned from my mistakes, the school has learned from theirs, and nothing like what occurred will ever happen like that again.

Liam pulled his gtube out at school while he was being fed. It's not a big deal, you use a syringe and easily deflate the balloon and pop it back in. The school nurse, however, failed to notify me until 2 hours had passed. That is still not a big deal because Liam has had his g-tube for four years and there is no way his stoma is going to close up that fast. I was about a 30 minute drive away from school when I found out and I assumed when I was notified that it had just popped out. They didn't say it had been out for hours. I didn't bring anything with me to school to put it back in and figured I'd just take him home and do it there in privacy.

When I got to the school I wanted to put everyone at ease about it not being a big deal. When I walked in the door I immediately told them it was ok, no biggie, and that I could just pop it in myself. They were thrilled to hear that all was good until I told them it had to be put back in within an hour. At that point their eyes got huge. They told me it had been out for over two. I grabbed Liam and headed out the door telling them we were probably on our way to the ER. 

I got home and was unable to get his used gtube in. I didn't have a spare (thanks to my med supply company) but I did have a foley catheter. I put the foley in with no problems. I just couldn't get the squishy old gtube to push through his stoma. Liam looked uncomfortable and I didn't want to inflict too much pain on him. So, I figured, I would just go to urgent care, have them numb his stoma and then push the gtube in. WRONG.  Unbeknownst to me, urgent care was useless and they don't help you at all if it involves a gtube.

When I got to urgent care they checked Liam's O2. He was satting low because he was coughing on his spit. The check in nurse got nervous at his low levels even thought I told her he doesn't require oxygen, he wasn't sick and it was just his spit at the back of his throat. She put him on O2, called for the ER nurse to come get us, and they whisked us to a bed.
Doesn't he look cute satting in the 80's?

And all I wanted was numbing cream.

Pulse oxes are pointless-just get me some lidocaine peeps.

Once in the ER, we were checked and spoke with the nurse about what was needed. Of course, we got the standard response, "The Dr. will be in just as soon as he can." 

I'm not going to go into all the details because it's a very looooong story of me getting mad at the nurse station because we had seen no one in hours, demanding my own foley to put in myself along with numbing cream, getting mad at the nurses station again when we still didn't get the supplies I needed, and then finally a Dr. coming in who had never seen a gtube like ours, had no idea as to how it went in and stayed in and was essentially no help at all. FIVE HOURS LATER!
Spongebob is the bomb.

If you all don't believe in God yet from reading the miracles that have taken place in our lives, let me show you one more:

A friend happened to get called in. He checked the admittance list for the ER and saw Liam's name. He came down to check on us and see why we were there. When he saw the situation, the stupidity of what needed to be done and what wasn't, that I was about to lose it after being there now for SIX hours, he said he had a Dr that he could call who could get us fixed up and out of there in minutes.

This guy did in a few minutes what the stupid ER couldn't in over six hours: get Liam's gtube in. All I needed, at hour ONE was some lidocaine.  That was the only reason I went to urgent care. I was trying to make it a bit easier on Liam to get the gtube back in.  What that ended up costing me was 7 hours at the hospital, a few lessons learned, and a little boy with a bloody gtube site. But what a gift it was when God sent a friend in after hours who knew exactly what to do. He does take care of us when you look to find it.

Holding Liam's stoma open with a lidocaine covered swab.
Liam's gorgeous, non leaking, perfect little stoma is now suffering from granulation tissue problems. I had to put silver nitrate on it last night and now the whole area is black from the application and red from the chemical burn of it.  I'm praying that the tissue issue gets resolved quickly and his little stoma gets back to looking perfect. We may have to have a session of myofacial release to get everything back to normal. Every Dr who has ever seen his gtube site comments on how fantastic it looks but right now it's ugly and raw. Luckily, Liam is such a trooper and other than the initial discomfort of trying to get the old one back in he hasn't complained a bit.

What lessons did I learn?

1) Make sure the nurse knows to notify me immediately if anything occurs like that again. 

2) Always have a back up gtube on hand. I had quit getting them because I don't change them out very often. They were just piling up in our closet. Once I went through the supply I had on hand I called to order more and they would only give me one even though I hadn't received one in a year. That left us with no back up. So, instead of saving insurance and medicaid money, I will just have them deliver them every 3 months whether I change them or not so I never have to worry about having a back up.

3) Urgent Care and the ER are of absolutely no help if you are dealing with a gtube issue. Urgent care doesn't even touch them. The ER carries no gtubes, the Dr's have no idea how one goes in, and if you don't have your own supply of equipment you will get a foley and get sent on your way to your gastroenterologist. None of that is helpful to a mom who has been changing out her own son's gtubes for 4 years. I can do all that myself with out them.

4) Even at times such as these, when nothing is as simple as it should be, when nothing is going right, and your anxiety is mounting over a banal issue, God is there, seeing that you are covered, watched over, and provided for.

Some lessons are learned the hard way. While we might wish the lesson didn't require of us what it took, nevertheless they are lessons that won't require repeating.

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