Wednesday, June 25, 2008

Lab Update

Keegan went in for more blood work yesterday morning since his prograf and white blood cell count were low last week. We assumed we'd go through this game for a few more weeks, changing meds and more labs each week. But NO! His prograf levels were acceptable, and his white blood cell count was on the cusp of being normal. Because we stopped one of the meds that was likely making his WBC low, the assumption is that it will be normal in a matter of days if he stays off of the medication until his July clinic visit. That means NO MORE BLOOD DRAWS UNTIL JULY 16!!! YEAH!!!

Keegan continues to amaze us every day. He is so eager to crawl and walk. He tries to crawl at least 20 times a day, and I know that he'll get it down very quickly. He can take about 6 to 8 steps if you hold his hands, and he really seems to get a kick out of it. Guess I better finish baby-proofing the house today! Keegan also picked out a baby pool for the backyard at the store yesterday, so we'll be blowin' that up today to cool off this afternoon.

SAVE THE DATE --- We've reserved October 5 for his next COTA fundraiser, a fishing tournament for kids. Keep checking back because we will need a lot of support to make it a success! Thanks so much for caring for our Bug. We hope you are all staying cool and having a great summer so far.

Wednesday, June 18, 2008

Clinic Update

Clinic went ok today. Not our best day. Keegan did not want to wake up at 6:45am to get there, so we started off on the wrong foot. When we arrived at 8am, the clinic waiting room was pretty packed already - not a good sign that things will run smoothly. His blood draw went quickly; the nurse was able to draw on the first try. Then there were some newbies in radiology. Keegan got tossed around a little, but nothing too bad. Back up to clinic we went, and luckily, we didn't have to wait long to be called back. He weighed in at 16lbs, 6oz and still measured at 26.5 inches. I think he's a little taller than that, but it's never consistent. His EKG went fine, but at the end, he was starting to get really sleepy. As soon as I went to pick him up to go into our exam room, he started screaming bloody murder. I knew he wasn't hungry, and I assumed he was just mad that I hadn't let him fall asleep. The crying kept up for close to 10 minutes until he finally fell asleep in my arms. Then, the surgeon who did his hernia repair stopped in to check him out. I laid him down on the table and noticed that the pacifier clip that had been clipped to his diaper during EKG had grabbed some skin when I picked him up. No wonder he was screaming! The surgeon said his hernia and circ looked great, and Dr. Barnes (transplant doctor) said his EKG and xrays looked great. Then, there was his labs - not so great. His prograf level was back down, so we increased his dosage even more. His white blood cell count was very, very low, so they stopped one of his immunosuppressants temporarily. His kidney function and magnesium levels were alright, but for the first time, his MCV level (average size of red blood cells) was really high, indicating a folate deficiency. So, now we are adding a folic acid supplement to his treatment schedule. None of this is necessarily dangerous or "bad"; it's just a little jarring to have more problems. We know this will be an ongoing fight with his blood and system in general, but it doesn't make it any easier to take. We'll have another blood draw next week to see if any of the levels have stabilized.

In better news, we had so much fun visiting with two of our CVICU "friends". Karis and her parents, Ashley and Chuck, came in Monday for a clinic appointment Tuesday. We were so lucky to have them spend the night with us and let Keegan and Karis spend some time together. Keegan and Karis were born the same day. She had a very rare defect and had open-heart surgery also. She is doing wonderfully and got a thumbs-up from Dr. Tia at her check-up on Tuesday. Karis can crawl and pulls up on everything. I sure hope Keegan was paying attention! Ashley got a great video of Keegan lovin' on Karis. Click on the link above to watch it and see her beautiful eyes and smile (no wonder Keegan fell in love)!

Yesterday morning before yet another massive storm blew through, Keegan and I met his friend Tucker and his mom, Mindy, at the Arboretum. Tucker was born two weeks after Keegan and came into the CVICU just after Keegan's chest was closed. Tucker went through many tests and ECMO before finally being diagnosed with Tetralogy of Fallot, just like Keegan. He had a complete repair, and although he will likely need more surgery in the future, he is doing so well now. He is a big boy with the cutest little smile and a mohawk too! (Sorry, Mindy, I think it's darling!) The boys always like being outside, but I think Mindy and I had a better time just walking and talking. I think Tucker and Keegan will be great friends one day.

Other than that, we've just been keeping busy. We finally have a free day with nothing on the calendar on Monday of next week. Whew! Keegan is pulling up on everything he can, and he'd probably do it more if we had a few more things his height in the house. He can make it onto his hands and knees but hasn't figured out how to move without landing on his tummy. He is saying a whole lot more these days, including mama! And he will take a few little steps if you hold onto his hands while standing. Keegan is figuring out how to chew with his two little teeth, but swallowing is turning out to be a bigger challenge. All in all, we're just taking it all day by day. Not much else big scheduled for the summer. We're planning his birthday/transplant anniversary bash and the fall fishing tournament. Watch for details!

Thanks so much for following Keegan and continuing to pray for him. We will post again next week after his blood draws. In the meantime, check out our new pictures! Have a wonderful week!

Thursday, June 12, 2008

9 Months Old

Can you believe Keegan is 9 months old today?!?! He had his check-up yesterday and weighed in at a little over 16 pounds and just over 26 inches. We're waiting to see how big he'll get once he's off the steroids in September. Dr. Lestz said she's just amazed at how well he's doing. He has hit all his developmental milestones. He loves to stand. He will stand for 15 minutes or longer if you let him, and he can even shuffle one or two inches side to side when he really wants something. He recently learned how to "high five", a favorite activity now. Eating-wise Keegan is doing better. We're about to make a bigger transition into big boy foods in order to be off the bottle by 1 year (only three months away! AH!). That's becoming easier since he now has TWO TEETH!! You can kinda see them in this little video from a few weeks ago; I'll get some more video and pics up soon. Still loves lima beans and yogurt; new foods include hummus, popovers (don't dare take his popover away!), tzatziki, guacamole. Pretty much everything except plain chicken and baby food carrots. He still sleeps like a champ. I have to credit Gray for passing on two great traits - eating and sleeping. I told Dr. Lestz that if Keegan continues to take after his daddy the problem will never be putting him to bed, just harder and harder to wake him up!!

Our biggest news by far is that last week we had NO MEDICATION CHANGES!! That's right, his prograf levels were 11.4!! Way to go Keegan!! That's only the second time in 9 months that's happened. Luckily, it also warranted a break from blood draws until next week when we go for clinic. Clinic should be pretty good next week because we don't have another echo until July. Both of his surgery sites healed up nicely, so back into the pool we go. He's really getting the hang of kicking his legs, and we're hoping to get some lessons in this summer.

That's all for now. We've been busy, busy, busy every single day this month so far, but sometimes it's nice to not have time to think about things. We're really looking forward to getting to see two of our CVICU friends next week - Tucker and Karis! We'll be sure to get lots of pics. That's all for now. Thank you so much as always for praying for our Bug. He wouldn't be here without all your love and support. Oh, and Keegan and I send the biggest, bestest Father's Day wishes to our wonderful Daddy on his first special day. We love you!