Sunday, May 31, 2009

How Many Doctors?

How many doctors can Keegan see in a week? Well, there were 4 last week and one tomorrow, not counting cardiology from the week before. It was a lot of doctors (no offense to our lovely doctors, but come on, 5 in 6 days?) and a lot of co-pays, but no bad news. Now, that's something to celebrate. First, we saw our adorable pediatrician. She was so happy to see Keegan at her office, since we haven't been there since his 12-month "well-child" (gotta love an oxymoron like that with Keegan). He got caught up one vaccine and received boosters of two more. If you remember, Keegan did not respond to his vaccines originally, so we're giving him some booster shots to see if he'll respond this time. When we see his immunologist at the end of June, she will rerun labs to see if he has sufficient antibodies to the diseases vaccinated against. If he has not responded well enough, he will receive immunoglobulin infusions to boost his protection. We discussed Keegan's developments and milestones at length, and while he is doing very well considering all he's been through, we decided it's time to get him into physical/occupational and speech therapy in addition to feeding therapy. Once all the appointments and evaluations are in place, Keegan will probably have 3 to 4 therapy appointments per week. His feeding therapy evaluation is scheduled for Friday, and we're still working on the rest.

Keegan also saw his hematologist, who said she cannot reduce the amount of shots he gets per week yet. He's holding steady at levels that are really impressive for Keegan, and she thinks he's not ready to be "tested" on lower amounts. We've only been home for a month, so we don't want to rock the boat, even if it means giving him an injection almost every day. We're hoping the shot that helps keep his anemia in check may be weaned by the end of the year, but our hematologist believes Keegan will be on the GCSF (for his white blood cells) for the long-term. His gasteroenterologist also made no changes this week. Keegan really needs to start his feeding therapy and be eating more by mouth to reduce his daytime tube feeds. His doctor also would like to see him have less dirty diapers (more like 2-3 than 4-5 or more) before altering his medications.

Lastly, we saw the dermatologist on Friday afternoon. She said his rash did look suspiciously like graft-vs-host disease, but in that case, she would have expected to see it in his diaper area too. However, like his GI doc and hematologist had said earlier in the week, Keegan doesn't exactly "read the book" on these things. We decided to treat it with a super high-dose of topical steriod ointment first before doing a skin biopsy. She said that if we didn't see results in 7-10 days, we'll reconsider. I am super happy to report, that Keegan responded within 24 hours to the cream! His skin is as soft as a baby's for the first time ever (yes, I realize the contradiction here in that Keegan is a baby, but he has never had skin this smooth!). Albeit, he's still got a little more hair than a normal baby thanks to the trial run of that other immunosuppressant last fall, but that's slowly getting back to normal also.

Tomorrow, Keegan sees the dentist for the first time. He'll receive antibiotics prior to going in, but we're anticipating a very brief, simple visit with some simple cleaning and tooth-counting. I hope it goes well! Then, we're doctor free until labs on the 10th. We don't even have to see his cardiologist this month. How crazy is that?!

Please pray that his feeding therapy evaluation goes well. We had to chart his food for three days, and while the chart was chock-full in the "foods offered" columns, the "amount eaten" columns all said "none", except for his water. I swear the kid must be part fish because he'd live in the water if we let him. We are very anxious to get started on the right track with his feeding therapy. If Keegan can start to eat more during the day, we can reduce and hopefully one day stop his daytime tube feeds. Perhaps y'all should pray for Gray, the therapist, and me instead...trying to get a kid to eat at this age is challenging enough, but Keegan's issues make it that much more difficult.

Other than a million doctors' visits this week, Keegan is doing wonderfully. He's happy most of the time, and he's LOVING being around Rusty. Rusty's not quite so enthusiastic about Keegan, but he tolerates it well. Keegan did throw up in the middle of the night last night, the first time in awhile. We're also getting a lot of residual fluid out of his g-tube, which he doesn't usually have. Please pray with us that this is just a fluke, and that things will continue to go well here at home.

Thank you again for continuing to follow, support, and pray for Keegan. It is very difficult to not feel like you're waiting for the bottom to fall out every day. Yet, each day we're home with manageable issues is a blessing and one more chance to believe that we'll be home for awhile longer. I know your prayers have helped immensely towards that goal, and we cannot possibly thank you enough.

Monday, May 25, 2009

Memorial Day Weekend

We had a very busy but surprisingly normal Memorial Day Weekend here. Saturday was the annual transplant picnic. It was much nicer weather this year, and it was so uplifting to see so many kids post-transplant enjoying themselves. We saw our friends Hannah, Natalie, and Shelby this year. There were quite a few new faces, as the transplant team has performed 17 miracles since last year's picnic! Keegan was a fireball of energy - climbing all over the enormous playground, running between Daddy & Big Daddy chasing a frisbee, wanting to dive head first into the cakes and Dr. G's puppy, Gigi! Keegan moved to the "Celebrating 1-5 Years" cake, and we can't wait until 2013 when he moves on up to the 5-10 year cake!

Sunday morning, we had the pleasure of meeting our friends, the LeBlancs, for breakfast while they were in town. We met them in Boston after their son, Aaron, had his second (and hopefully, last) open-heart surgery. Both boys were much happier this time around, being free of the hospital and all. Aaron is doing wonderfully. He should be medication free by the end of this week; he's gaining weight, and his oxygen saturations are 100%. Way to go, Aaron! The boys seemed to enjoy themselves too. Keegan showed Aaron what fun toys straws can be and how to thump large, silver spoons on wooden tables. Aaron was much more well behaved and modeled some great eating behavior for K! We are so sad the LeBlancs had to head back to Louisiana and couldn't stay for more good times. We can't wait to see y'all again soon.

Sunday afternoon, Keegan played and swam at BD and Mamie's house with Mama's cousins, Maya and Marley, and great uncle Tim. Where were Gray and I, you ask? Why we were having an awesome parents-only afternoon on the lake with our friends and neighbors, Kelley, Carl, Ben, and Abby. Thank you so much for hosting us, Kelley & Carl. We really enjoyed spending time on the lake, although I think Gray regretted wakeboarding quite a bit by Monday morning! Ha!

Monday, Keegan did some more swimming. We had a very relaxing, safe Memorial Day, relaxing outside and eating our weight in ribs! Keegan has a slew of appointments this week, so we'll be sure to update again this weekend when its all said and done. He goes to the pediatrician tomorrow morning, labs Thursday morning, hematologist Thursday afternoon, gasteroenterologist Friday morning, and dermatologist on Friday afternoon. Then he gets a break until his first dentist appointment next Monday morning. Whew! Because transplant patients are prone to infections in the mouth, Keegan will be going every six months for the rest of his life. Sorry, Bug. After that, we should be appointment free until closer to the end of June, when he'll have labs, immunologist, and the gasteroenterologist again. That's ok, we'll take doctors every day of the week as long as we get to go home after each one!

Be sure to check out the pictures we posted from the weekend of Keegan having fun. We'll add more soon, so keep peekin' in on him. Also, don't miss the video of Keegan that we posted earlier in the week. It'll certainly make you smile. Lastly, please continue to pray for our friends, the Akemans. Paul's surgery was successful, but he remains in a great deal of pain. Angie is caring for him and sweet, little Miss Avery, who has been a little off since her daddy's surgery. As you know, Avery battles so many problems, like our Bug, and we ask the Lord to watch over her and bring her peace and healing. Thank you so much for your prayers for this family and of course, for Keegan as always.

Tuesday, May 19, 2009

Cardiology Clinic

Clinic went well but very long yesterday for Keegan. Daddy was able to accompany us back to the hospital today, a truly special treat. Keegan was certainly back to his old rockstar status. Everyone wanted to come say hi, and by far, the most uttered phrase of the day was "He is SO big!" (Big being a relative term, however, since at 20months he's more the size of a 12month old...but big for Keegan.) And he is - his weight was down, but obviously, this is a different scale. Even with some weight loss, he's still 21 pounds. Light years away from the measly 14 pounds he weighed in November.

Keegan's chest x-ray was "beautiful" according to Dr. Barnes, and his EKG was stable. We were able to avoid an echo until July because he had one before leaving Boston. Labs were mostly stable but a little off. His liver enzymes were up a touch, no need to worry yet though. His red and white blood cell counts are being kept at good levels (at least good for Keegan) by the current 4x/wk shots we're giving him. A few other things were off, but the doctors are giving him until next Friday to redraw labs before taking action. Dr. Barnes (Keegan's cardiologist here) is not going to alter anything in "the plan" from Boston at this point. Good choice, since we probably wouldn't have agreed with changing it anyway. Keegan's kidney function was the only other topic of the day. We agreed it was time to refer him to a renal specialist to have a procedure done that will evaluate Keegan's current level of kidney function. The diuretic he's on now will be continued. We don't anticipate having to do anything special about his kidneys (or rather, one non-atrophied kidney) now. We just want to know where we stand now for comparison in the future.

Between catching up with everyone and doing all of the above, it was almost noon before we headed over to his hematologist's office to get his pentamadine (a breathing treatment to prevent pneumonia). Of course, his pentam wasn't ready, so 45 minutes past his naptime we were heading back to the main hospital for the treatment. Needless to say, Keegan had a royal meltdown in the treatment chamber and completely passed out in his stroller afterward. That allowed me to catch up with Dr. Leonard (who performed K's first open-heart surgery) and Dr. Guleserian (his transplant surgeon). By 2:20pm, a full 6.5 hours after arriving, we were in the car on the way home. WHEW! But, drum roll....next month, he only has labs and pentam...and it can be done at Legacy! He'll only have one more full-fledged cardiology appointment in July before his annual and cath/biopsy in September. I'm floored by that...a good floored!

Today I went back to the hospital for my monthly family advisor meeting. I'm hoping that my role in the hospital administration will facilitate some changes to prevent our previous experiences from happening again to Keegan or any other kid. Everyone was very anxious to hear about Keegan, and there was a collective "wow" when I announced that we have been home since May 1 - the longest we've been home consecutively since the last week of August 2008! Can you believe it? I almost don't want to put that in writing lest I jinx it. Well, we won't let it get jinxed - we are here to stay for awhile. We're still trying desperately to get Keegan's therapy schedule in place. No more appointments this week. Next week, we'll see Keegan's pediatrician, hematologist, gastroenterologist, and dermatologist. We don't see immunology again until the end of June.

Thank you so much for your prayers for our friend, Paul. His surgery was successful, and he is at home recovering. Your continued prayers would be appreciated as Angie cares for Paul and Avery in the coming weeks. She is a superwoman! As always, we are so grateful for your prayers and support for Keegan also. COTA has been such a blessing to us. We truly could not have survived the last nine months without your dedication and generosity to this cause. Your donations have helped Keegan and many other transplanted children. Due to Keegan's history, his deductibles have exceeded $10,000 per year, and he's not even 2 years old. It certainly won't get better from here. Because of COTA though, we don't have to worry about making sure Keegan gets the best medical care, regardless of holes in or insurance coverage. The Lord's work is truly being done through so many of you, and we are humbled to experience that blessing every day. Thank you, thank you, thank you.

Thursday, May 14, 2009

We're OK

Ok, remember somewhere around, I dunno, July or early August 2008 when there would be no posts for awhile? I know, it's a long time ago, but just try to think back....it was because things were alright, no big news to report. Remember "no news is good news"? Well, we're back, baby. I haven't posted in 9 DAYS because there hasn't been anything too earth-shattering to report. Unless you really want to hear about how we've been absolutely killing ourselves with unpacking, organizing, cleaning, ordering, laundering, dog-walking, appointment-making, appointment-going-to, and outright hacking off of the overgrown roses/holly/etc in our yard! We've honestly accomplished some very normal things in the last nine days, such as getting haircuts (even Rusty!), finished babyproofing since K is a walking maniac, washed too many crib sheets from leaking g-tubes, ordered some summer clothes for K, walked Rusty as a family, even went to the grocery store once. I know, it's insane, right?

Keegan's had only one appointment so far, with his GI doc, last Friday. We didn't get lab results until Monday. Some numbers were up, some down, but for the most part, everything was stable. He goes to cardiology clinic on Monday, and then the end of May is just chock-full of doctor visits - pediatrician, hematologist/oncologist, dermatologist, and back to the gastroenterologist. He's had a few nights of rough sleep, but it doesn't appear to be from pain. His belly isn't distended, although we're worried he may have lost a bit of weight. He is much more active now, though, so that could definitely be a contributing factor. We're waiting to hear back from the feeding therapist for an evaluation appointment. He still isn't eating consistently, but we put him in the highchair three times a day to at least try. That will be a very long road to get him off of the continuous daytime tube feeds.

We are looking forward to the dermatology visit at the end of the month. Keegan's skin remains his most noticeable problem, especially around his eyes. Some days, like today, it's not too bad. The rash will be mainly contained under his clothing. The bad rash days are more difficult because that's when you can look at his face and tell he's not a normal, healthy kid (if the feeding tube coming out of his stomach didn't give it away). There was talk in Boston of doing a skin biopsy to determine if the rash may be something that pulls all his symptoms together (a post-transplant issue called graft-vs-host disease, will post more about that later). But tonight at the park after dinner when he was disconnected from his feeding pump, he looked like any other little boy on the playground. That certainly makes our hearts swell with joy and gratitude for our blessings.

I could go on, but I still have quite a bit to do tonight. I worked in the yard all afternoon (thanks for your help, Mamie), and the mosquitoes were out in force! Time for some benadryl! We'll update again after cardiology clinic on Monday. In the meantime, don't worry if there are days between posts - we promise we'll let you know the important stuff. Have you seen the latest photos of Keegan? Also, please please keep Little Miss Avery's daddy, Paul, in your prayers. He is having disc herniation and fusion surgery on Monday. This is a very serious surgery, and your prayers would be much appreciated. We ask the Lord to send his angels to be with Avery's family - to carry Paul through the surgery and provide him with courage and healing, for Avery's health to stay stable as Paul recovers, and for peace, strength, and patience for Angie as she cares for her beloved family. Thank you so very much.

Tuesday, May 5, 2009

ER Trip

Lordy, Lordy. We just can't catch a break. This morning, I tried to get Keegan to eat some cereal in his highchair. He didn't want to try, and I didn't want to push him. He was struggling to get down, and his feeding line got caught on the highchair. I didn't see it, and it yanked right out of his tummy. It was a bad pull, and he was bleeding a bit. After I thoroughly freaked out (even though I had been taught what to do in this situation), my mom helped get us to the ER at Legacy, where Gray was able to meet us. That granulation tissue (kind of like scar tissue) that had started to build up bubbled into the site, and the surgical nurse practitioner had to come help get the button back in. She burned the bad tissue off with some silver nitrate. Needless to say, it was a rough morning. Keegan's still very sore and not in a great mood. He just now got out of the chair in the living room and started playing. Poor thing; he's a trooper though, so brave and strong. I feel like such a horrible mother.

We're trying to get all of Keegan's appointments lined up. We go to the GI doc for follow-up and labs on Friday, and the remaining 6 appointments follow after that. We'll update as much as we can, but the next few weeks will be pretty busy for the whole family. We are truly appreciative of your prayers and support. Thank you so much.

Sunday, May 3, 2009

Home

We arrived home safe and sound late Friday afternoon. Thanks for those of you who prayed for a safe trip. It was definitely the long way to go, but we are more comfortable with our choice as the H1N1 virus spread to Massachusetts just before we left. We enjoyed a wonderful day in our previous hometown of Nashville (where Gray & I lived after getting married), visiting our favorite places and catching up with friends.

We're slowly digging our way out of the mini-van full of stuff we brought home from Boston. We also have to get everything in order for spring, since we still have all winter clothes and whatnots about. Thank you so much to my parents who had our carpets and floors cleaned and refrigerator stocked before we arrived. We'll catch up more later with pictures and updates, but for now, we're back to organizing! Follow Keegan on Twitter for in-between info/updates.

Thank you again for your prayers. Keegan is doing about the same as when we left, but he is developing some granulation tissue around his g-button. We will see our GI doc here and have labs drawn this week, and cardiac clinic is coming up mid-month. All four of us need haircuts (Rusty too!), and Mama is way overdue for the eye doc and dentist (and hopefully a pedicure!). More later!