To start, Anders is still on oxygen. His last appointment was at the end of September, and at this point, his average oxygen saturation levels were at 95% over a 24 hour period. This is good, but I guess not good enough. He would have times when he would be satting 99%, and then suddenly drop to 91%, so no dice getting off the O2. His next appointment is at the end of November. I don't know if we are planning on doing another overnight oxygen test or what. IF we do, and IF that goes well, he will will have to do another overnight sleep study at the hospital to make sure he is 100% ready to be done. At this point, I have just accepted that he will be on oxygen indefinitely. After being home for nearly a year and not being able to go off, it is mostly just part of our world.
Ander is still 100% dependent on his g-tube (feeding tube). He has been undergoing occupational therapy for some time now (to help him learn how to and want to eat), but we have not had too much success. Because of the CHI stuff, we had to switch to a new GI doctor, whom he met with a couple weeks ago. This doctor suggested to us that we do two things: an integrity test to see if the surgery was successful (Anders has started throwing up his food again), and a referral to the Monroe-Meyer Feeding program in Omaha. So, we are moving forward with both. Anders completed the integrity test this past Thursday at Children's Hospital. Basically, they put 5 or 6 ounces of barium (a liquid that they can see with the x-ray machine) through Anders' g-tube and then watched to see what would happen. Anders immediately threw this up--proving the theory that they surgery he had received in June had failed. I'm not totally sure about this, but I remember doctors telling me that the fundoplication could not be un-done or re-done...it was a permanent surgery. It had a 90% success rate. So here we are yet again having bad luck with percentages. (Seriously--how many children are born at 24 weeks?)
About Monroe-Meyer. Here is what I found out: that the program Anders will most likely need is a 8 week program. 9-5. There is no way, NO WAY, that I can take that much work off AGAIN, so if Anders ends up going this route, we are going to have a sit down meeting w/ my family and see if we can divide it up amongst everyone so no one will be gone much from work. Plus, my parents are retired and have offered to help. (They have stepped up and helped us SO MANY countless times.) However, after finding out that the surgery failed, I'm not sure this is the right thing for Anders. IF they do convince him to eat, he will just throw it all up anyway, and our cycle of not wanting to eat because he doesn't want to throw up will continue.
Maybe this sounds really bad to you. Maybe you are wondering why this is so heartbreaking for me. ("Addie is SO dramatic!") I mean, yes, for sure, things could be worse. A few of you know about some of our other struggles these last few years, but it's definitely been a tough go at times.
There are positives though. (Why is it always so easy to focus on the negatives?) Anders is crawling like crazy. He can pull himself up. He is incredibly social and has the sweetest personality ever. He rarely fusses, even though he is teething. He sleeps like a champ...he naps easily and sleeps each night from 7:30pm-8ish-am. And we have such a blessing in our son, Quinn. And I am seriously (SERIOUSLY) married to the most amazing man I've ever met. (Even though he's a little weird sometimes.) My husband sent me this after learning that our road would continue:
Addie – thank you for your strong heart, for stepping up to the plate for our family while never knowing what direction the pitch is even coming from. (watched that baseball game last night) You are loved, and the example of love that you have set forth in our home has been one of the many spots for us to lean on in our seemingly endless number of trying times. I wish I had the answers, and that I knew what direction we were headed, it’s my job to protect this family and lead us in the right direction and not knowing is so very hard, for everyone. This journey that we are on is the path that was set up for us, where we are to do HIS work, we have a big job to get done and that is what we’re going to do.
I can’t thank you enough for being the #1 in all of this; I know it’s hard, but please know that I love you and appreciate everything that you do for brother and for our family so very much, and know that we have both grown in this marriage because of the tougher times that we have been through, we can do this, I know we will get through this, this is not the end. You can lean on me and I will lean on you and we’ll both lean on Quinn and Anders, they are the constant smiles and source of innocence in all of this and will have a spectrum of emotions/feelings that few will be able to equal.
Most of all, we will always follow and trust that we are in the Lord’s hands, and like you always say, this is such a short time here on earth for us, we’re meant to live w/ Him in paradise, and if things were always perfect here there would be no need for Paradise! J
For whatever reason I screen grabbed this from Matt last night - -
Do Not Worry - Matthew 6: 25-34
25 “Therefore I say to you, do not worry about your life, what you will eat or what you will drink; nor about your body, what you will put on. Is not life more than food and the body more than clothing? 26 Look at the birds of the air, for they neither sow nor reap nor gather into barns; yet your heavenly Father feeds them. Are you not of more value than they? 27 Which of you by worrying can add one cubit to his stature?
28 “So why do you worry about clothing? Consider the lilies of the field, how they grow: they neither toil nor spin; 29 and yet I say to you that even Solomon in all his glory was not arrayed like one of these. 30 Now if God so clothes the grass of the field, which today is, and tomorrow is thrown into the oven, will He not much more clothe you, O you of little faith?
31 “Therefore do not worry, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ 32 For after all these things the Gentiles seek. For your heavenly Father knows that you need all these things. 33 But seek first the kingdom of God and His righteousness, and all these things shall be added to you. 34 Therefore do not worry about tomorrow, for tomorrow will worry about its own things. Sufficient for the day is its own trouble.
We have much to be thankful for and to focus on in tougher times – to name a few – a wonderful marriage, the ability to have babies, a warm bed, food to eat, wonderful family members, wonderful friends, a great community, athletic ability, WRN, and on and on ….
Love you babe – always and forever no matter what we’re served up, we’ll take it down together one step at a time, hand in hand always!
Philip
Ps – I called and am picking up the meds tonight
I'll end on this--I know that all of us have battles to fight through in this life, and this is ours. We just need to trust, try our hardest each day, and be thankful. And try to get some running in. :)
So beautiful and so inspiring. My favorite scripture: Do Not Worry - Matthew 6: 25-34 and one of the few I have memorized. Love you all so very much. Sending you prayers, blessings, peace, and love.
ReplyDeleteDanielle