Waiting Once Again

Here we are. Waiting once again.

I spoke with Beckett's new nurse at Cincinnati Children's Hospital Medical Center today, and we discussed his case history. She gave me an idea of how the process worked as an out-of-state patient and some scenarios of what we can expect to happen. It definitely gave us a better picture of how this could all play out. She has now passed Beckett's chart on to the doctor they feel best fits our needs, and we can expect to hear back from them next week with a plan of what needs to happen next. More than likely, we will be headed to Cincinnati sometime this fall. It is rare that they review a case and decide that everything is being done exactly how they would do it.

We had a busy GI day today as we also had an appointment with our doctor at TCH. Once again, they were not too pleased with Beckett's rate of growth. He is gaining, which is a praise, but we do need him to gain more! So please keep praying that he will grow! They bumped his formula up to a toddler Elecare formula, now concentrated to 30 calories per ounce (as opposed to the typical 20 calories per ounce in infant formula.) That means we will be flying through these little cans of formula even quicker! And he gets to try vanilla flavored formula which should add some excitement to his day and a nice change of pace to his taste buds!

I am thankful that his GI team at TCH is very understanding about our second opinion with Cincinnati, and they are willing to help in any way by doing any necessary blood tests, stool tests, etc. The NP actually looked a bit impressed that we were working with CCHMC...like she knew I had been doing my research. They are also looking forward to our appointment with the Geneticist here at TCH, as that will help look for rare metabolic disorders that could be causing his failure to thrive.

It is a definite possibility that his lack of weight gain is in direct correlation to his motility disorder, but they agree that it is good to investigate or rule out other possibilities.

So this week, we wait. And honestly, I am quite nervous about it. In a week, we could have new information or be on a path that will change my little boy's health and quality of life. This has been quite a process already, months quietly in the working, months of searching for just the right place to take him, months of waiting for him to "prove" his need for more intervention. And now here we are, a week out from the possibility of more help and more answers.

Over this next week, my prayer is that I can wait with purpose. I can use my time to praise God and love God with all of my heart. I can use my time to teach my boys about God's love and God's truth. I can spend my time in prayer for my family, our dry and "thirsty" state, and those around me. I do not want to spend my time in a ball of anxiety- nervous, exhausted and on edge. I do not want to live in worry while I wait. This is all much easier for me to say then to actually do.

Please pray for the doctor who is doing the final review of Beckett's charts and tests. Pray for patience and wisdom. Pray that they might find the underlying root to his difficulties if there are any and that they would have some solutions to help him grow and thrive. Pray that nothing would be overlooked. Please pray also that all travel arrangements would line up easily in the even that we need to travel. Please pray for our hearts while we wait.

Thank you so much for your prayers.

Results

So, according to Ryan on The Office, blogging is out. But I continue on...mainly as a way to remember these days. I think a blog can create a wonderful virtual baby book in a way. And being a mom to young children is a precious season that flies by so quickly. I easily get lost in the busy-ness of it all, the diapers, the sippy cups, the silly questions, and so many firsts... So this is my way of remembering my days as a mom to little ones, even if very few people ever glance at it.

So, late in the day yesterday, the nurse at the surgeon's office called. She told us that the pathology was not conclusive of Hirschsprung's Disease. I honestly did not know what to feel in that moment. I felt relief that he would not be undergoing such an operation, but at the same time exhausted to be back at square one. I think in a way Hirschsprungs felt like it could be the beginning of the end. I don't think any parent wants their child to be diagnosed with HD, but something continues to bother him and his system and an answer to "why" would be a sort of relief...a relief from wondering and from testing. Our sweet little one would have had to undergo surgery, which is always scary, but we hoped he would take off from there and begin to catch up and feel good. I think we could see an end in sight as surgery could possibly "fix" our little man. However, mostly we are thankful that he is not requiring surgery because there were complications that could happen and recovery can go several ways. I think our best case scenerio would be that he would just grow out of some kind of horrible reflux, and begin to "thrive." So now, here we are wondering what will come next.

Full Tissue Biopsy

B's full tissue biopsy went very smoothly on Monday. He handled the anesthesia just fine, and recovered well. We are so thankful that it all went so well! We only had to stay one night in the hospital for observation, and we got to come home yesterday around lunch. We should get the results from the biopsy sometime today. So we are just waiting and praying...

As a side note, I have another prayer request for Beckett. His formula intake has decreased substantially since the procedure. Please pray that it picks back up quickly and no weight is lost. Thanks!

I will get back to you soon with the results and the plan for what is next...Thanks for your prayers!