Gas Station

Today was a lab day and I had to schlep both kids as Brett had a work meeting. We were in traffic for one hour because, bless them SC folks can't seem to really drive that well in rain. There were multiple accidents. Ian has to have labs before he has prograf as they are measuring the level in his body 12 hours after his last dose. We have an 8am/8pm prograf time. Today, we had a 13 hour trough time instead in the 12 hours thanks to the traffic. Argh!

Ian climbed up and into the chair by himself and was a champ. Not one tear.

The folks at MUSC were even ok with the new orders to send the EBV (a viral test) out to CHOA so that was awesome. I was prepared for much weeping and wailing and gnashing of teeth over that one.

As customary, we stopped to get a drink and special treat for Ian after labs because he did well. While at the gas station, Ian starts the potty dance so we go and use the facilities at the station. No sooner had a turned to lock the door do I look back and see Ian touching the toilet lid to raise it! AGGHHHH! We have talked endlessly about germs and public potty spots being very very gooey and gross with germs but alas! We used lots of germ-x because of course there was no soap in said gas station. Of course!

Weaning off Prednisone

We got a call on Friday from CHOA that they are going to start weaning him off the prednisone. This is awesome. He is far enough out from his transplant and doing well enough that they are cutting him back to a M, W, F schedule. We are excited but also very cautious as this may trigger some rejection so he will keep his every other week lab schedule. Once he is off the prednisone, he will be on just one medicine, prograf, which he will be on for life. We are going to try to start teaching him to swallow a pill (about hte size of a tic tac) in yogurt or applesauce. We are hopeful it will be a quick learning curve so we don't have to continue to get the prograf compounded.

The call came the same day as our snow here in Charleston so in honor, I'll post pictures of Ian enjoying some playtime in the rare cold weather event here in the south. I am so glad that we were not admitted to CHOA last we so that Ian can be outside and enjoy this.

Back from CHOA

Ian's EBV numbers are normal!!! That is the biggest news from our visit to CHOA where they run labs differently (and a bit more accurately) than here in SC. So we were not admitted to CHOA, no rejection, etc. etc. We feel exceptionally blessed on all accounts. Ian was great at CHOA. We met the new transplant coordinators and Ian quickly selected a new favorite as she gave him ice cream--chocolate nonetheless! It was a longer visit than normal because they were busy and all the doctors that needed to see him but he was so patient. We had a bit of some hoops to jump through to get his labs but even for labs he was good. At the end he wanted his name braclet off in the hospital and didn't even want to wait until we were in the car. Thanks to all who were praying for us! We appreciate it so much!

Energy

We will head to Atlanta on Sunday and be ready for labs first thing on Monday so the results can be sent out in the 8:30 shipment. The labs take two days to turn around so we are going to stay put in Atlanta with my sister and wait until clinic on Wednesday for a chat with the transplant team and the results. That way if the results come back positive, we will already be there and not have to turn around and make the drive again in such a short time period.

All things point the lab tests, etc. being done at CHOA as a precaution. His EBV history hasn't been great so the transplant team is being detailed in their approach which we appreciate. We are optimistic.

Here are a few pictures of Ian's IV with his puppy (it is a sticker the nurses gave him) sleeping in his IV house. The puppy was named Fido. His IV pole was named George and we would talk to George when we would go out, etc. It was great. And Livy loved to try to climb on George! I did learn that for the next IV, we need to be sure to get it in his LEFT hand. I even told the nurse he was right handed but I think in all the hub bub to get it in that was lost. Ian had to have help eating, brushing teeth, going to the bathroom, etc. It was great to get that out for lots of reasons. And speaking of, his nurse let him to take out his IV for the most part. He thought that was pretty cool.

He is doing well clinically so he is excited to go to the Primary activity tomorrow. I think mostly because he can wear his pj's to it. Ian has had more energy today than all of hte last week and all I can say is "please share some of that with your tired mom!"

Home

we are back home today discharged around noon. Ian fell asleep tonight so speedy in his own bed. We celebrated Brett's bday in style--at home sitting at a table to eat rather than hunched in a tiny hospital room eating take out food.

Ian is doing well. we will go to Atlanta (CHOA) for labs and a clinic visit with the transplant team this coming week.

I'll post pictures, etc. later. Thank you all for praying for us and the love and concern.

Another Day

So we were hopefully going home today but no deal. Our doctor miscalcuated the time that we needed to stay.....so we (meaning Brett and Ian) are there again tonight. We should, dare I say it, be home tomorrow.

On that news, we will be headed to Atlanta this Sunday. Thankfully we won't be going there tomorrow (that was a very real possibility until about 8:30pm tonight). We will at least have the weekend at home to recoup and my Mom (thank you so much Mom) will be joining up with me to make the drive and stay in Atlanta.

A huge thanks to my friend who was so kind to watch Livia all day for me so that I could be with Ian and Brett could attend to some work related things.

We will be in Atlanta from Sunday to at least Wednesday and possibly longer based on test results. The CHOA transplant team wants to evaulate Ian and run some specialized tests that are best conducted there.

I have some pictures of Ian in the MUSC play area from today but am exhausted so I'll post them in a future update. He loved the painting, thomas the train table, and his new love.....the air hockey table!

Hospital Stay

Ian has been spiking fevers for the last few days and last night he spiked a fever of 102.6 which anything over 102 our transplant team has told us to go to the ER. Brett and Ian headed to the local ER. The battery of tests began. The strep tests, and flu tests came back negative as did his chest x-ray so the doc there transferred him to MUSC the main hospital here in the area.

The doc at MUSC wants to keep him for at least 48 hour "rule out" period where they rule out certain things. CHOA team has been consulted and ordered an antibiotic that had to be given via an IV. The IV start wasn't pretty in terms of Ian's reaction (there was some major trauma with the three IV tries from the ER the night before). I was there solo with him for that....I guess that is "fair" as Brett was solo for the shots and IV tries the night before. Dealing with that level of trauma with your child is just torture of the worst type.

Ian is doing well clinically. His fever has since subsided as of early this AM and liver labs and ultrasound are good. He had labs drawn again tonight for viral screenings and we should have results tomorrow and are hoping they are of course negative.

We are all doing OK just tired from the lack of sleep and anxiousness of the ordeal. Thank you so very much to all who are thinking of us and praying for us.