Made of Gray

Hello Pittsburgh

Raising the Rare Child, Traveling w/ DisabilitesHolly D Gray3 Comments

I know many of you have been waiting on our report from Pittsburgh Children's Hospital. I took a few days off from writing just to absorb, rest and regain some perspective on things. 

To make this not so long winded I will say that we really liked what we saw of the hospital since we experienced the old hospital when Caleigh was about a year old. We got along with the intestinal team really well. Especially the surgeon which is a huge plus. 

We got a new perspective on Caleigh's intestinal bleeding. If there is a problem in the liver it will cause the veinous blood to back up into the intestines which could cause the enlarged veins that are bursting and bleeding. This has to do with the portal vein circulation. I know...totally confusing. You can think of it like congestive heart failure. The blood flow isn't awesome. This is apparently very rare, but they just don't understand the new findings of bleeding and the veins in her intestines so this could be the cause. 

They are recommending a liver ultrasound first followed by an MRI to watch the blood flow. These can be done at home. When those results are back they would like to do an angiogram. This is a serious procedure so they are suggesting doing it in Pitt. 

We discussed Caleigh's granulation tissue inside her stomach around her g-button. They are baffled about this and told us they haven't seen it before. It's horribly painful for Caleigh so I was really hoping for an answer, but instead we get to put it in her "rare" category. 

They are going to be asking for more records and will give us their recommendations sometime this coming week. Surgery is recommended and sooner rather than later. It will most likely be exploratory to see what is going on, remove visible strictures and possible re-step or tapering of larger sections. We were told 10-12 hours of surgery. 

Caleigh started crying as soon as the appointment started. She calmed down with music but totally didn't show her true colors. She was nervous, shy and upset and I don't blame her one bit. We left the appointment beyond exhausted, grabbed some food and crashed. Caleigh cried for over and hour at bedtime as well, but slept well once she went to sleep. It was a emotional day and one that I would like to park for now until we have to make any decisions. 

The next morning we woke up a little wary, but ready to see the city that we missed out on all those years ago. We started out with the Phipps Conservatory and I couldn't recommend it more. It really is beautiful and mostly indoors. It's been around since 1893 and the structure itself is gorgeous. Caleigh had a nice time and despite the small crowds we enjoyed the visit.  

We ate lunch and then made it down to Point State Park in downtown. It was nice to be outside and wondering around in the fresh air. The view was lovely too. We ate dinner at Eden which we walked to from the Shadyside Inn where we were staying. If we decide to come back to Pitt we will definitely stay in the Inn again. It was basically an apartment and perfect for longer stays. 

Today we are on the road headed to Niagara Falls. The temperature is 35 degrees and there is still snow and ice on the ground. I can also see Lake Erie to my left and it is covered in ice. Such a neat experience for us Texans. 

Tomorrow we head to Brooklyn to spend a few days in New York before moving on to Boston. We are off to have some fun and make some great memories! 


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