Grant's Journey

Yes it is true. Today is my birthday. The day started off a little rocky (ever left a burner on and majorly scorched a pan without knowing it was happening because you were in the basement playing with an irresistible 3 month old....then the fire alarm goes off and you realize that there are major burn areas to tend to? Yeah...that was our morning! No worries, all is well and the pot is finally scrubbing clean...phew!) With a start like that, how could it not be a great day! After that fiasco, we had to worry about changing Grant's tape that holds his feeding tube in place. We have to do this a few times a week and it is an incredibly stressful even teach time. Today, he snagged enough of the tube to leave the tape pulling away from his face. It was only a matter of hours before he got more of the tube, so we decided to try and get him sleepy to change his tegaderm (the tape that holds it on). He woke up mad that we were messing with his face and threw a fit nearly dislodging his...

We have had a lot going on as far as Grant goes, but my time to document has been very limited! Here is a little catch up: Our cardiologist called me a few days ago and updated me on Grant's pre operative testing. After talking with Dr. Day and Dr. Cowley (the cath lab experts) and Dr. Birch (Grant's heart surgeon), they have decided against doing a cath for Grant. Knowing his history, everyone agreed that it would be fairly dangerous at this point to have any central lines in his atrium without him being on the operating table so they could immediately get his heart going again. Dr. Birch said he felt like an MRI would be safer and then he would be able to do some exploration in surgery and make sure that everything was ok with his pulmonary arteries. I am ecstatic about this news! I was feeling sick to my stomach about a cath on Grant and I am taking this as my mom's instinct to know that it would not be wise for him. There are more risks for his Glenn since they will not...

A picture taken before the hurt pinky, but I thought it too cute to not post! We had a checkup today for Grant's heart post swallow study and last week's cardiac episode. We were supposed to see Dr. Williams at Primary's last week, but since Grant's episode was the day before the scheduled appointment, I decided I was too exhausted to make the trip again the next day. He had an opening in Pocatello this week and got us in. No major news really. He told us that his opinion of last week's episode indicates yet again that Grant does not have much of a reserve built up to handle tough events. He suspects (along with my own opinion) that Grant likely aspirated during the tube placement and the positive test results from his swallow study should not be trusted. He indicated that though it is likely that he did not aspirate when he was content during the test, he is simply too unpredictable and fragile to attempt bottle feedings where he could be at risk. We will keep the ...

You read that right. After a great time at home, Grant had to make an emergency trip back to our expensive hotel on the hill....the lovely Primary Children's. It started out innocently enough. My angel mom took off work to help me out this week and she was sitting with Grant in the car on Wednesday night while I ran into Walmart to get a few much needed items. He started to get really fussy (he does NOT like his car seat!) and in efforts to try and get him out to comfort him, Grant's NJ tube got snagged and pulled out. He was hysterical, my mom was a mess because she felt so awful and was so shaken, and we had to try to see what to do. I made a call to the on call pediatrician at the hospital and got him to call in orders for a replacement in the flouroscopy lab at PCMC (they can only do NJ placements there on kids this little). We ran home, packed up Grant's equipment and meds, and took off for our 2 hour drive. As we rushed out (there is major concern if Grant gets dehydr...

Grant has been busy trying to catch up. His daily routine consists of: Figuring out that he has hands and feet that do cool things! Tummy Time! Grant has not been able to have tummy time for very long since his incisions were still healing. We have been working with him a lot and he is doing pretty well at keeping his head up when on our shoulder or propped on his boppy pillow. He still nose dives frequently, but this is HUGE progress for Grant! Smiling! Our pediatrician told us most babies will smile at their parents consistently after about 6 weeks. We were sad that Grant had really not been smiling consistently at us until recently. Our pediatrician told us that he was not too worried....truly, until now, he has not had much to smile about! (sad huh.) Luckily, Grant has now mastered the smiles and gives them generously to anyone who will come talk to him and rub his feet. :) Holding in his own Binky is a new skill we are working on. Grant has come a long way and now LOVES his bin...