Friday, November 2, 2007

Hannah and I did quite a bit of running around yesterday. But not before we cuddled on the couch and watched some of her favorite PBS shows. It's nice to be doing some "normal" activities.

I had to get some new tires and have some problems looked at on my car. We need one more repair that I didn't get taken care of but hopefully we can get it taken care of within the next month or two. We stopped by our MI adoption agency and got some questions answered about some paperwork. We got a milkshake at McDonald's and Hannah had a short playdate with her best friend, Madi.

I want to take a minute and explain what is going on with Isaac. I don't intend to be dramatic, but he's not healthy. If you think about an adult being in ICU, you understand that their health status is critical. Isaac is in the NICU (Newborn Intensive Care Unit). His health status has always been critical. He is more stable, now, than he has been in the past. But, if he were taken of his oxygen and TPN (IV vitamins), he would likely die in a few days to a week. The TPN that is keeping him alive because he cannot eat, is harming his liver and his bones. He has two peripheral IV's that are HIGHLY susceptible to infection. And, if gets an infection everything is put on hold until the infection is completely gone--usually 7-10 days. He was supposed to get his Broviac yesterday but surgery pushed it back to today. I have been very clear with Rainbow that his NICU staff have been wonderful. But I'm very disappointed with the Surgery Department for continually pushing back his much needed surgeries. He cannot eat again until they remove some pieces of his small intestine that are too dilated for food to pass through--called strictures. He is not bleeding out all over the place, but his surgery is necessary for him to eat, therefore, to live. I DO trust God's timing. And I understand that "everything is for a reason," but as a parent, it is my job to ADVOCATE for my children. ANY PARENT in my situation would be off their rocker, too, if their children were not taken care of in a timely manner and dates continually changed. NO QUESTION. I have always been respectful but firm when speaking with the staff about my frustrations. Next time, it's going to Jason calling. And he's the attorney in the family. He knows how to get what he wants better than I do.

We love our children. It's our responsibility to take care of them and advocate for their needs. And that's what we'll always do. No matter what.

12 comments:

Anonymous said...

Good morning,

Another day gone by and things are still at a stand still for you and yours. We will "continue" to pray that all will go well for Isaac and that it will all work out in the end. I can appreciate your frustration though! Here is a "hug" from us!! (")(:) Thanks for the update on Isaac's condition it lets us understand better what is going on.

Christ's Love and Ours Gram and Papa.

Anonymous said...

Your right, it is your responsibility to advocate for your children. We've been in the same boat with drs for our son and sometimes it takes that little extra push to get them moving. It shouldn't, you would think that they would understand the situation and the severity of the issues but sometimes they need that extra push from the parents. Don't sit back and take it...Fight if you have to. He's your son afterall.

Anonymous said...

I will continue to pray that you get some results...SOON! It is beyond our understanding why little buddy has had to wait so long for surgery when he so desperately needs it. But God is in control here. Sometimes it's so hard to understand HIS timing....

Anonymous said...

Certainly it is understood that the medically things can be frustrating. However, the doctors may need to push surgeries or procedures back to assure the best optimal results for the patient depending on that patient's health concerns. So as frustrating as it may seem, remember it could the best decision for your buddy's health. As family, we may not always have this insight.

Anonymous said...

Tiffany, so happy to hear you got a little "typical" family time in yesterday as well as much needed chores done fixing the car and such. I am sure with all that driving back and forth it is important to have it safe.
Oh gosh, how frustrating it must be sitting back and feeling like you (Isaac) keep getting pushed to the backburner. I have been on both sides of this, as a parent and as a nurse. Try to take comfort in knowing they too really do want whats best for your little guy. You are doing what Moms and Dads do best, looking out for your baby. Keep it up and stay strong.
Prayer from all of us
Jodi

Anonymous said...

I will be praying MUCH for you and Jason, for the tasks ahead of you. Most of all, I will be praying for that sweet little bubby, Isaac, as he is waiting for these surgeries and procedures to be done to him. Once again, thank you for sharing your heart and concerns with us.
Becky
Ohio

Jane said...

Still praying in SC!

Anonymous said...

That was a very informative and insightful post for alot of people. Sometimes the words "angry, anger,frustration,being put off",etc. get misinterrupted. "Advocating"says that you are giving your child a voice, instead of you giving voice to just emotion.

Good job creating a voice for Isaac, and making people understand that this is not about you and just YOUR emotions.

I love all of you and hope that you are getting some peace and rest. The 3 of you
stay as close as you can for as long as you can, until the next trip away.

I am very proud of you and Jason. XXXXOOOO love, Mom (Nana)

Anonymous said...

Oh my, I am so excited that I could not wait to post to you. I have rarely posted but have been a faithful follower of your blog and praying for you since JoEllen shared your story with me. Now months later I looked for you the other day at rm house...my friends ken and Jeannie Schlabach are staying there and their 7 week old son just had a heart transplant. Jeannie and I were talking and she was telling me about a friend (you) that she has made and I was like OH MY YOU GOT TO BE KIDDING ME!!! You werent there, BUT I will be up again and I will look you up! I was wondering if you need anything that I could bring you or Hannah? Were you there for the yummy supper last p.m? more friends from here...I continue to pray for you and want to meet you!
Kendra Kaufman
kendra5@juno.com

Anonymous said...

Hey its Gram again and I am praying that all continues to go well with "little bit" my affectionate name for him. It is so exciting to see a blog that is refering to another family that is there with you that is responding to you and your being a friend to another family that is there. (If you know what I mean) I am happy to hear that the baby got a heart transplant!!! Praise The Lord!!! It is a witness to HIM!!

Needless to say we so enjoy the blogs and when ever there are things on there that you have a problem with just know that there are those of us out here that are praying for all of you. Granted everyone has thier own ideas as to what is going on that does not mean you have to take it to heart!!Just remember that as you have said so many times it is in the hands of the Lord. Yes you have a voice and you should express it!! As your Mom so aptly said enjoy the 3 of you until you have the 4 of you. Hopefully that will be sooner than later!! PTL!!!!

Opps my game shows are coming on and I will watch them until 8:00 and then watch the second part of God Father 2. I am sure that there are some out there would think that is not the best thing to watch but I have always enjoyed the "old" movies from the 70's I think. At any rate life here is going on. Papa is doing about the same as I have told you.

Christ's Love and ours, Gram and Papa "V"

Jody said...

Hi...I found your blog through a link at another blog I read- they were asking for prayers for your family. I wanted you to know I am praying. I live outside Grand Rapids...and have my own story of family tragedy and ongoing challenges as a result of an incident that killed my 4-yr old daughter, Teagan in 2001, and left the rest of my family with serious/critical injuries. I know what it's like to have to be 'pushy' with medical staff to get the care your loved ones need at times. I also know that God is sovereign and that He has all things in His control- even when it is out-of-sync with what we feel we need at times. I actually just blogged about life and how we sometimes get the message that we deserve an 'easy life'. I am starting to believe it is far better to suffer and to know Christ and to live in His peace and will, than it is to ever live a comfortable, 'easy' life. I would love for you to stop by my blog and read further. I know God has and IS using my pain and experiences for HIS glory in life. It's not the way I would have had things go if I were to have designed my life...but I see it is beautiful none-the-less, and I wouldn't trade it for the world.
Love and prayers and encouragement for you and your family to keep trusting and following. One day at a time. I have no doubt God will bless you with beauty and Joy on your journey.
Sweetly~ Jody Ferlaak

Anonymous said...

Hey kids and grandbabies, Just checking in. Hope that you are all feeling healthy and are continuing to focus on each other during your time together. I am trusting that Isaac is being well taken care of.

It is a fall sky here in northern Mich. No snow yet!!!!! I am attempting to get done a few projects that I do not enjoy but never the less I will keep poking along!

My love to the Evans 4, Mom (Nana0