Wednesday, August 13, 2008

Clinic Update

Clinic went well overall today. Keegan's EKG and xray looked great according to Dr. Barnes. His labs were pretty good. His prograf levels were still good, so no change there. His WBC was at the high end of their acceptable range for the second draw in a row, so we are restarting Cellcept. Start one, and stop two though! NO MORE STERIODS!!! Yeah!! Keegan was also on a reflux medication, called Prevacid, as a preventative because the steriod can cause esophogeal erosion. So, we'll stop both of those as of today. The good thing is that he may have a height growth spurt now, but steriods also tend to increase appetite. We obviously don't want him to stop eating any more than he already has.

Ok, so the not so great news. Keegan has only gained 0.2lbs (from 7.4 to 7.5 kilos, about 16.5lbs) in the last three months. He is still nowhere near being on the weight or height charts. Now, lest I get sneered at by some of you who say "but he doesn't look skinny." Yes, I know - he's not in the "failure to thrive" category, but it's still concerning to see 3 month old babies as big as Keegan. He is eating a little bit more. He is touching and putting more foods with different textures in his mouth, but he doesn't necessarily swallow them. We probably get one good meal every three days or so, and he isn't making up those lost calories in formula. We met with the dietician at the hospital today and decided to wait one more month to take action. Most US pediatricians recommend babies being off the bottle and formula at 1 year. The dietician and doctors today agreed that Keegan may need to stay on formula a little longer and increase the concentration back up a little more. We will meet with his pediatrician in the next few days to discuss this aspect more. As my mom noted today, I am much more concerned about this than the doctors seem to be, but he is my child, my Bug, my baby. He has been through so much with flying colors. I just want him to be as normal and healthy as he can possibly be. Prayers about his eating and weight gain would be much appreciated.

In other news, he is crawling at the speed of lightning now, but it's still his little peg-leg crawl. Poor thing has a nice little bruise from dragging that knee around the place. Now that he's more mobile, we have found him in some precarious positions, such as under the coffee table, under his exerciser, under the jumperoo, and trying to crawl into the open frontloader washing machine while I was sorting laundry. Although he has let go standing a few times and has tried to stand up on his own, he seems less interested in walking now that he knows he can get there faster crawling. This new ability interupted his sleep for a few weeks, plus I think he is at the beginning of making his 2-to-1 nap transition. He's doing a bit better on the sleep end now though. It really got to me for awhile because he has been such a rock-solid sleeper, just like his dad. He is a much happier camper with proper shut-eye too!

Can you believe that Keegan is 11 months old now??! Time flies, as they say. On September 23, we will have our next clinic visit and annual biopsy. After that, we are down to clinic every three months, labs/xray at Legacy every month, and echos probably only once a year!! The biopsy will be performed in the catheritaztion lab at Children's. We are scheduled to be the first cath of the day at 7:30am. They will use a cath (tube fitted with pinscers and a camera) through an artery in Keegan's neck to take pictures of and a tiny sample of his heart. This biopsy of his heart is the only true way to test for rejection. He will have one every year for the rest of his life. He has already had one the morning he got his heart. If you remember, the doctors didn't tell us there was a heart available for Keegan until they took pictures of his lungs in the cath lab. That day his lungs were "beautiful", so we are praying for another good outcome this time. All of his other tests will be performed while he is under anesthesia for the cath. The entire process takes about 12 hours. He should be able to go home at the end of the day, unless he needs to be hospitalized for rejection or any other conditions. We saw another transplant friend of ours today, 4 year old Hannah. She had her cath yesterday, and she was doing great. She kept tickling Keegan under his chin, saying "goochie, goochie, goo!" Hannah's hysterical. It was definitely reassuring to see her doing well and up and about after cath.

OK, I think you've had just about all the Keegan news that's fit to print at this point. Have you seen the pictures of Keegan's first haircut and trip to the library yet? Sneek a peek at the Bug here! I will post some new pictures soon, but this old laptop is having difficulty recognizing the camera tonight. Please keep Keegan in your prayers as you have all been so kind to do so far, specifically for his growth at this point. Prayers that our back-up laptop stays alive until we can afford a new one would be appreciated too! ;) Wouldn't want y'all to miss out on updates or pictures! We hope each of you are doing well and surviving the heat of the summer. You are each in our prayers of gratitude every single day! Take care, and thanks for checking on us.