Today is Day 16.
Today was kind of a quiet day in a sense. There were no major crises. It was mostly just watching and waiting. Peyton seemed to be in a little bit better spirits and even managed a few smiles and attempted laughs. Not big belly laughs by any means, but it was good.
As I mentioned in my Day 15 post late last night, Peyton was going to be switching to nutrition via IV called TPN. This was the big thing we came out of the family conference with yesterday. There really is a whole lot to consider with TPN. What does this mean for Peyton? For her quality of life? Will the theory that it will help her absorb nutrients actually turn into reality? The list of questions goes on. Even with the TPN, the gap between where we are today and where we'd need for her to be to even consider going home is wide. I need to see for myself how this will work and, ultimately, what benefits we see for her in terms of a general base line status. Though the day was quiet, it was heavy.
While Peyton is in here, there is the opportunity to run some of the tests that are being requested by Genetics in Boston. Most of the testing is on her. However, back in February, we received a kit from Boston. We needed to collect blood samples from Ron and myself and a saliva sample from Moira. Of course, the issue is where to have this done. Yes, any lab could collect the samples. We had the return mail pouch so the getting it back to Boston wasn't the issue. My concern was whether or not a lab would draw the blood without a doctor's order, just this kit. I'd mentioned to one of her doctors here that I had this kit and could bring it up. The other part was making sure Ron, Moira and I were doing this all at the same time, and that samples were collected on a Monday, Tuesday or Wednesday. The samples have to get there overnight. They can't sit in a warehouse or on a truck over the weekend. Today, the three of us did our little bit for Peyton. It all went well, although the nurses and I had a few moments of comedy surrounding getting my blood drawn and into the vial.
I enjoyed having a few surprise visitors today. Thank you all so much for the coffee, magazines and company. It was great to see you all!!
Peyton began TPN this evening. This is what it looks like. It goes directly in through her port. There is also a separate syringe which contains lipids which will also go in that route. When the pump gets here, it will be delivered via a syringe IV pump over a certain amount of time. This concoction of nutrients is a special blend just for Peyton. Praying that this does something to help. I feel like it's a shot in the dark as well as being our only option.
If you are wondering about the other half of the family, Ron is hanging in there. I know he's feeling a lot of stress as well. Moira is doing well. We have had the help of friends and she seems to be hanging in as well. I did have the school guidance counselor speak to her the other day and, by all accounts, that went well. She also had the opportunity to hang out with a Child Life Specialist here at the hospital this afternoon. They talked a bit and played. Moira seemed drawn to the area where there is a play hospital room - so kind of role played a little. I understand that went well too, so I am encouraged by that.
I appreciate everyone's kind words, deeds, prayers, support and so on. It makes the days so much more bearable!