The Schindewolf Squad: A rough morning

This morning we had our appointment to get Tucker's blood drawn for the next round of testing to determine if he has a certain disease. I ended up having to call their office yesterday because he had a horrible night Sunday night. He woke up just about every hour crying in pain due to his g button (which is not normal). The surgeons have now done everything they can do so I knew calling them would be pointless, so I called our immunology doctor. The reason being, they told me that with this particular disease, patients have trouble with skin and wounds healing. I ended up talking to the nurse and she told me that they would make sure and have a ostomy nurse (specialize in wound care) at the appointment to look at the site and see if she could offer any suggestions. I then wanted to double check that had the special team lined up to do the blood work, she told me she had a call in to them but couldn't guarantee it. I politely told her that if they couldn't be there I would be happy to come back anytime to get them to do it. I refuse to let my baby be poked over and over again, full well knowing they will not be able to get anything. We've been through this too much already. She assured me she understood and we would figure it out.

Fast forward to this morning. We arrived and one of our doctors came in to talk with us. We had to sign consent forms for them to do the genetics testing needed to diagnose. We went through lots of info and she gave us some handouts on the disease. Again, I will share the name of it along with more info later. After a slew of new information along with lots of questions (I'm infamous for my large array of questions) she informed us that the special team would not come until their nurses had tried to draw blood themselves. So I reluctantly agreed but told them that I would only let them stick him once and that would be it. They agreed. I had to leave Carl in the room for that one and I could hear my baby screaming down the hall. Breaks my heart every time, trying to be tough only lasts so long:/ anyways, they weren't able to get it and called the team. They said they would be up shortly. The formalities are ridiculous but oh well. the team came and got all the blood they needed quickly, thank God, and it was over. Poor tucker was exhausted and sweating and passed out in my arms shortly after. Honestly, I wish I could have passed out in the comfort of my moms arms too! We then had to wait for about an hour for the ostomy nurse to come up. She finally did and took a look at the button. She said it didn't look too bad and gave me some foam to wrap around it to help with what's called granular tissue that has developed around it. So we will try it and see if it helps.

We now wait. The results will take 4-6 weeks to come back. We finally get to see our GI again next week and boy do I have some questions for her;) we will likely be scheduling a repeat endoscopy, gastro and immunology are curious to see how the inflammation is and so am I. Other than that, I'm hoping for a little break from all the chaos:) we shall see. I just have to keep reminding myself that this is in God's hands. He so gently reminded me of that yesterday. In the midst of waiting on doctors to call me back to figure out what to do about tuck's button and pain, I was working on my daily bible study and at the very end it reminded me not to rely on humans to give us the answers, rely on and trust in God, ask him for the answers. At that moment, I hit my knees and did just that. And a peace I had been needing came over me. So thankful!

Sorry for the lengthy update! Thanks for checking in:) please, please, please continue to pray for our sweet boy! We believe in the power of prayer:) and I have to give a shout out to my wonderful father in law who has been toting Tripp around to swimming lessons and speech and helping out while we've been busy with tuck! I cannot express how blessed we are by this wonderful man. Grammy is looking down with a big smile on her face:)

Ok, enough chatter! Have a blessed day!!