Okay, I continued my pity party for a while today. My frustration, fear, and fatigue have just reached a point where I guess I needed to let it out and then move on. Thank goodness for a few emails I received today and for the encouraging messages left by everyone on the blog yesterday. I got it together and tried to get something accomplished today. I sent an email to a secretary of Dr. Laquaglia at Sloan and asked her how to best get the scans and radiology reports to him so that he can review them. I also wanted to know why we still haven't heard regarding the final histology reports. Remember we are still waiting to see if the tumor that was removed still shows that Brady is in the intermediate risk category with favorable histology. This is a BIG piece of information as to how well Brady will do long term. The person I emailed returned my message within an hour telling me exactly how to send the scans to Dr. L and she also contacted the NB team personally to check regarding the test results. I feel relieved to have a direct way to contact someone who is effecient and timely. Thank you Gillian for this great tip!
An area for prayer is Brady's Broviac site. As you know we have surgery scheduled for June 5th which means we will have 2 dressing changes between now and then. I noticed his site looked kind of "gunky" tonight, so we decided to change it today. While taking off the old adhesive dressing, we noticed that there are two patches of skin that have come off leaving raw areas underneath. I am supposed to clean the area using a sterile sponge soaked with an alcohol solution. Imagine having to do this over an open sore. This was a terrible experience for me, but a horrible one for my poor Brady. We are just frustrated that this surgical date was initiated sooner and that we have to wait 2 weeks for a 15 minute procedure. Matt is going to call tomorrow to insist that our doctor does something, anything, to get this thing out sooner. The site where the tube comes out of his chest is starting to not look good, which raises concern of infection. Honestly, I don't think I can bring myself to do that one more time.
Hopefully if anyone else needs encouragement today you will find this verse as helpful as I do tonight:
Ps 62:2 He alone is my rock and my salvation; he is my fortress, I will never be shaken.
I'm so very glad I have Him to lean on :)
Oh Meg, I'm sorry things continut to be so very hard. I can't imagine what that dressing change must have been like, but you are doing an awesome job and so is Matt. Keep it up! Brady needs you.
ReplyDeleteYou go girl!!
ReplyDeletehugs for brady. That site has to be sore. poor little boy.
Praying for you guys. =D
Megan,
ReplyDeleteSorry I haven't commented in so long... but I have been reading and praying! I miss you! I am praising God for your faith in Him - you have built your house on the rock - not on sand - and you will get through this with God's help. Keep fighting!
Love,
Steph D.
The change in the site might be just the trigger for a quick surgery. Hugs to all,
ReplyDeleteAnne
I know you don't even know me, but I found your blog and your family is on my mind often. I pray for you all. Not that it matters what I think, but I believe you are doing such a wonderful job advocating for Brady and can feel all the love you have for your family. I wish you luck getting an earlier date to remove his Broviac. Please don't get discouraged.
ReplyDeleteDear Megan, Matt, and family,
ReplyDeleteI am so glad that you were able to find out how to best get the information to Dr. L at Sloan and the NB team. I remember dealing with Strong with my grandfather and it was taxing staying on top of things with each hospitalization.
If Matt is unable to get anywhere getting the "tubies" out you might consider calling your pediatrician and seeing if they can force Strong's hand to get this thing out a.s.a.p.
Continued prayers for everbody!
God's love, strength, encouragment, and health to all!
Pam
Meg,
ReplyDeleteI love your honesty and I love even more your reliance and faith in God!!
Sometimes we trudge through life, sometimes we skip, and sometimes we are carried!
I will pray tomorrow that Matt can get a sooner date to have the Broviac taken out! It must be horrible for both Brady and you!
Praying for you guys!
Megan and Matt,
ReplyDeleteDo not be weary or heavy laden, for our God is sufficient to give you rest. We continue to pray for our Brady Boy and for you guys. Keep following your heart and your gut. I am praying for God to give you rest and to make you feel full again. We love you guys!
Robin
Thank you everyone for your support and suggestions! I think the timing of our two year appointment with the pediatrician Friday may work out great! I will have her check out Brady's tubies and get her on board with getting that thing out:)
ReplyDeleteI'm still following your story and keeping you all in my prayers. What great frustration you are encountering. I hope you can take a few minutes each day to express that frustration mightily. I often do better when I can blow off a little steam on my own and I don't have anywhere near the steam you must have! I am amazed at your strength and pray for peace for you.
ReplyDeleteKerry
Poor Brady. I cant imagine how much his site hurts. And I am sure it hurts you just to look at it. Hugs!!!
ReplyDeleteMeg and Matt-
ReplyDeleteKnow today in your heart God had one son, He alone knows your heart, your fears, your desires. I stood outside w/my 3 yr old pushing him in his swing and just stood in awe of the beautiful day. The beautiful, blue skies, the hot sunny day yet a cool breeze to keep us cool. The leaves were dancing in the wind, and i heard the innocence of my child say God made the sky and the moon and the sun mama! I said you're right Collin and the same God who made them made you too.
After lunch and before nap i've been pulling out some old home school Bible picture cards we have started in Genesis. It is amazing how much these little ones can digest of the Word when you show them life size pics. Sin in the garden and the serpent deceiving man, is already helping Collin understand why lying, or sassing, or hitting and biting is wrong! He makes that connection and sees why we need God, not b/c we just should or we are just raised to know God but b/c we need Him.
As I read your post the past two days i grieve inside and hurt for you as a mama, But I reflected back to standing outside looking at God's beauty, and hearing Collin's innocence about how he saw the same beauty and recognized who placed these things here on earth, and was reminded that God tells us to come to him as a child. Why? B/C children usually live worry free. Yet when they are scared or hurting and we pray or say it's going to be okay they believe it!!! They don't think you are lying, they don't doubt!!!
Fight the fight as you stand on the PROMISES of God! Like: He never gives you anything you can't handle. I work all things to good for those that love the lord and are called according to His purpose! ASK ANYTHING in my name and it shall be given you. He is the same yesterday, today, and forever! Pray w/o ceasing.
The woman who was hemmoraghing became so desperate, she crawled and touched the hem of his garment as he passed by, and she was healed. Speak these promises over your children, post them around your house, guard your hearts by bathing them in prayer, the word, and not letting the enemy deceive you and lie to you, or cause you to lose hope, or torment you w/ awful thoughts...Be in peace...