03 October 2014

Glad thats over

Our driver picked us up at 12:45 yesterday to take us to the hospital and Liam was already sedated and getting his stem cells extracted by 2:00.  We were in a different area of the hospital than when we were here last time and it felt much more like a typical US hospital set up. Last year our room had a thick bed comforter and a wooden armoire and couch so this set up started out feeling like much more sanitary.

The extraction was done literally on the other side of a glass partition from our room. It was clouded so I couldn't completely see but it was comforting knowing he was within reach.

Last time when they did the extraction I didn't see Liam again until it was time for the infusion. This time Liam was brought back to me, pleasantly sedated on propofol, and he slept for most of the next two hours while they processed his stem cells. Again, it was nice to have him with me right there while we waited.

Once the cells were ready they took Liam right next door through another clouded door where they got him all set up in the cardiac cath lab. Once they had threaded the cath through his femoral artery in his left leg and had it up in his carotid, they called me back so I could watch the procedure. While the procedure is done Liam is continually under an xray and I am in the room with the monitors so I get to watch the stem cells pulse through his brain. It is still such a really cool thing to witness.

I watched them infuse on the right side of his neck, then they did something different from last time in that he went up some vessel on the back of the neck with another vial that sent an infusion right to Liam's cerebellum and parietal lobe.

Next they went to the left side but the cardiac interventionist couldn't get the cath threaded. I stood there watching and getting really nervous because he kept shooting it up his torso and then it would just bend and reroute. I didn't want to watch but at the same time I was rooted to my spot and couldn't move. The CI threaded that catheter out and switched it out a few times and after 20 min he finally got it threaded up to his neck. The whole lab fave out whoops and hollers and started giving thumbs ups to me. It was a huge relief to see that catheter up where it needed to go.

When they finished with that infusion I was asked to leave while they finished up with Liam. When the CI was done they asked me back to the room and we all gathered around and prayed over Liam.

It is a full two hours in the recovery room before we can be released and Liam did such a great job. I was dreading his recovery because last time he screamed for the entire time. And if you've ever heard Liam cry, you know he cries very quietly. But not after the last procedure. He wailed like a mortally wounded animal. This time he was so calm and only fussed a couple of times.

We were given the green light to go back to the hotel and 8 hours after leaving we were back. I was a bit concerned that Liam was running a low grade fever and sure enough in the middle of the night he woke up hot and dry and uncomfortable. I spent two hours awake with him trying to make him comfy with no meds. Dr. Anthony didn't want me to give anything if it wasn't necessary in order to allow the stem cells to proceed with out interruption. I used some essential oils tried to get him back to sleep.

This morning he still felt a bit warm so we took him to the pool for a couple of hours and it really cooled him off. I gave him a cool bath back in our room and I am praising God that he has been fever free the rest of the day.  But I'm still keeping essential oils on him for now.

Dr. Anthony called to check on him and will do so again his evening. We just feel so blessed and are thankful that things are going well.  There is a lot of bruising from the cath and they took extractions from both hips this year but he is healing very nicely. I really think the worst was having to take off the tape. Liam and tape are not friends.

Thank you for all the sweet texts and messages!The comfort felt knowing others have your back is indescribable. We are excited to head home tomorrow.  We have a long day with 12 hours of travel but after a week of isolation and this trip, I am looking forward to getting back to normal and moving Liam forward.