Wednesday, June 24, 2009

New Pics

See, we get to title this post "New Pics" because there's not a lot of news on the medical front. Insurance, medicare, and nitty-gritty who-pays-for-what/why-are-WE-paying for this matters are another story, but as far as Keegan's concerned, no news is good news. We are hoping to get our MDCP (medicare waiver program) coverage up and running in the next month. We made a huge step forward by scheduling his in-home evaluation yesterday. Now, we wait on official authorization from Austin, and scheduling the 24-hour nursing home stay that allows us to use this particular loophole. More on that when we get it scheduled. This program will allow coverage for an in-home nurse/attendant to help with Keegan's care when needed and a certain amount of the money can be used for his therpies and formula.

Yesterday, Keegan was evaluated by Early Childhood Intervention, a state-funded program for in-home therapy at discounted rates for children with developmental delays in cognitive, communication, physical, social, or adaptive skills. The team was here for 3.5 hours, and by the time they left, my house was a disaster area. I think almost every toy we own was out in their attempt to evaluate him, not to mention the mess in the kitchen. Of course, they came during Keegan's nap so that we could get the paperwork portion done without him running around. He woke up screaming, which he usually does not do. I run in his room only to discover that he had a mishap with his g-tube, and formula and tummy contents have soaked him and everything in his crib. I felt like such a pulled together mom, having my child evaluated in a diaper and Harvard tee! Oh well!

Keegan got one gold star in his ECI evaluation. His age equivalent for physical skills was at 26 months! Way to go, Bug! He was given bonus points for being able to walk backwards, scribble in horizantal lines, and walking up stairs normally, rather than bear-crawling. I know all the other children his age that we know do all these things, but I was happy that he scored so well considering he was stuck in a hospital crib for almost 9 months of the last year. The therapists rated him at 8 months for his communication skills. He only has two real words (hi and bye, and sometimes what sounds like "daddy"); he does not imitate sounds well, and he doesn't use his sign language unless prompted. At first I was angry that he was scaled so low because I know how smart he is. I've come to realize it just means that we have a lot of work to do. He has been kept away from other kids for so long and stuck in a hospital for so long that it put him at a disadvantage. I have every confidence that he'll be jabbering up a storm soon. It will just take a bit more work for all of us.

The ECI team will be back on Monday to go over their plan of treatment, and we should be able to start his sessions with them fairly quickly. We are still waiting on his plan from Baylor for feeding therapy. They may be the best at what they do in this area, but they are certainly earning no bonus points from me on coordination or communication. I've already left two messages this week. I know feeding therapy will be a very long process for us and that patience will be key. Still, we are so anxious to get started because we don't want to lose any more ground.

Next Tuesday, we draw more labs and see our immunologist here. She probably will see us briefly and have us come back after the lab results are in. Next Wednesday, I will meet with the chief medical officer of the Board of Trustees at the hospital to discuss the care coordination and communication issues that occurred with Keegan's care this past year. Keegan's case brought resolution of these type of problems which have been ongoing in the Children's family to the forefront. We are optimistic about the direction the hospital is taking on these matters and are eager to provide any insight we can to making care better for all patients. I would greatly appreciate your prayers for me as I prepare for this meeting. It is certainly an emotional topic for me, but a lot rides on my being able to communicate the issues at hand clearly and intelligently.

Lastly, we posted some new pictures in Keegan's June photo album and a new video. Please don't forget to check them out, and leave a comment or guestbook entry for Keegan. Your words and prayers mean so much to us. Can you believe we've been home for almost 8 weeks? Us either! Your prayers and encouragement have helped make it so. Thanks so much, and have a great week. Stay cool out there in the sizzling heat!

Wednesday, June 17, 2009

Little Update

Thank you for keeping Keegan in your prayers as we reran his labs yesterday. His immunosuppressant levels (amount of the drug in his system) was just a hair low, so we made no changes and will recheck on the 30th. Keegan's cardiologists in Dallas have agreed to keep him on the lower end of the spectrum, as was decided in Boston. We seem to have better blood count (red and white cells) when his immunosuppressant levels are low, and we are ok with under-suppressing him just a touch since we've had a recent heart biopsy, which showed zero rejection (praise the Lord!).

His liver numbers were better but barely so; some would call the difference too small to matter. We're really not sure what to do with this information. They're not high enough to admit him, but we don't want to "chase our numbers" either. For now, we're going to check them once a month unless they continue to creep higher and higher. The GI doc is going to run one more test on frozen tissue from Keegan's last intestinal biopsy, perhaps even ask Boston to run it on the liver tissue there. No one thinks we'll get an answer from this test, but it doesn't hurt to try.

Lastly, Keegan's magnesium was up another touch, again almost not enough to matter. The problem is that putting him back on magnesium supplementation will cause even more diarrhea than he already has, and he is averaging more dirty diapers a day than we would like at this time anyway. Again, not sure where to go from here on that aspect except to check it again next month. Keegan's scheduled for a very big lab draw on the 30th for immunology tests, so some of these numbers may be run again if we don't have to take too much blood in one stick.

We're still waiting on Keegan's therapy plans to be approved. The insurance company is dragging its feet, seems like the therapy center is dragging its feet. I know it hasn't been that long, but it sure seems like its taking forever. I spoke with the center again today, and we're hoping to have some kind of plan together by next week. The evaluation for the state program will be next week. Gray and I have decided to start playing with Keegan's tube feeds a little on our own, trying to get him some more time off the pump and backpack-free.

Other than that, we're just trying to stay cool as we approach our first official 100+ degree day here in Texas. Blah. Even more reason to give Keegan more time off his feeding pump! I've been trying to write this update all nap long, but I believe Keegan's having one of his transient intussuseptions this afternoon (see clarification on this painful episode a few posts down). No fun, so I'm praying it'll pass soon. He's no fun without a nap! Thank you again for your continued prayers for our Bug. There's not much more we can say but that today!

Thursday, June 11, 2009

Update

Well, once again I apologize for the delay in updates, but we've had such small tidbits of info that I tend to wait until we have enough info for a true update. Lately, I've been praying so hard and thinking so much of our other friends who are struggling with health issues that Keegan's little problems seem, well, so little. While it makes me sad for our friends, it is very exciting to say that Keegan's issues are little compared to everything else he's been through since last fall. Many people have asked how we are doing, and I guess that has been my answer so far...Keegan's health issues will never be a thing of the past, but at least now, they are manageable enough to allow us to be home for an amazing 5 weeks! Around January or February of this year, the thought of spending over a month in our own home seemed like such a lofty goal. We are so grateful for everything and everyone who has helped make this a reality.

First things first, we would greatly appreciate you adding some of our friends to your prayers. We know Keegan's "prayer warriors" are strong and faithful! Our friend, Carter, whose parents helped connect us with our docs in Boston, is a multivisceral transplant recipient. Shortly after his one-year anniversary, he developed a case of hemolytic anemia and has been in the ICU. He is now on the floor and hoping to go home soon. This has been very scary for his family, and we pray that the Lord continue to allow Carter to heal and be home soon. Next, a friend of ours from Boston, Stellan, has been having more heart problems lately. He is handling it ok, but it is very stressful for his parents. We pray that he will continue to benefit from the medications he is taking and allow him to grow big and strong before another surgery is needed. Lastly, please continue to pray for our friends, the Akemans. The nasty stomach bug going around hit their house too on top of everything else, but they are all hopefully on the downside of this awful roller coaster ride of the last several weeks.

Now, on to Keegan...the therapy evaluation at Baylor last Friday went pretty well. They recommended he participate first in the day-patient program, where he would go for feeding therapy and PT/OT every day for several weeks. However, the waiting list is very long, and even their outpatient (2-3 times per week) is pretty booked. Of course, our insurance only covers 20 visits per year, so we are working extra hard to push Keegan's medicare coverage through. All this to say, we don't know when he will be able to start feeding therapy, but hopefully, he'll get to start at least something soon. He will also be evaluated by ECI (a state program) in a few weeks for more physical/occupational and speech therapy at home.

Yesterday, we went in for labs again. Keegan's liver numbers have started to go back up. This is concerning, and we'll be watching those numbers closely. Keegan's immunosuppression levels are still on the low side, as well as his magnesium levels. The catch-22 is that if we put him back on magnesium supplements, it could cause even more diarrhea. He's already gone back up into the 7-8 range per day, so obviously, we don't really want to do that. We will watch all these numbers closely. The only good news in his labs was that his blood counts are holding steady with the current medications he is on, which is lovely except that it means he still has to get 4 shots a week.

Other than all that, he is acting just like his normal, goofy self. He's been especially goofy waking up from his naps this week. I've really had fun playing with him in his room during the "silly" times. He also had his first swim "lesson" with some friends from the neighborhood on Monday. I say "lesson" because it was just the moms and kids at my parents' pool trying to get them to blow bubbles and hold their breath when dunked underwater. Hopefully, they'll all get better by the end of the summer. Last night, we had an interesting bout of weather, and Keegan waited out his first tornado watch in the bathtub. Perhaps we overreacted a bit, but the weatherman was showing this thing go right over our house basically. Keegan, needless to say, was rather confused about being in the tub with his clothes on and pillows over his head. In the end, one fence and tree in the neighborhood are down, and a tree on the wooded property next to our house fell a little too close for comfort but didn't appear to cause any damage.

Next week, Keegan has his breathing treatment on Monday, and I have a feeling we may be called into the GI's office to discuss his liver and intestinal issues again. The only other appointment for the rest of the month is immunology on the 30th. We're keeping our fingers crossed for no more than those! Thank you so much for your continued support and prayers. We are overwhelmed by the prayers and COTA donations that have sustained us through such a rough ride. It's often said that having a child with chronic illness is a club that no one asked to join, but we have especially been blessed by the encouragement and strength of our brothers and sisters of this very special club. Still, it is our children that give us the most courage to get through each day. I am uplifted daily by the fact that Keegan has no idea that he is different from his friends or other children. He does not regret the "normal" things he has missed or agonize over places he cannot go and things he cannot do. What a treat to get kisses and laughs (and even tantrums) from my little fiery miracle! He makes every day in the club worthwhile and reminds me that it is through HIM, our Savior, that we welcome each obstacle with a smile. Christ didn't die to end our suffering. He experienced it then and NOW with us in the promise that this life is not all for which we are destined. The Lord works miracles in many lives through the journeys of the children in our "special club", and we could not be more thankful.

Thursday, June 4, 2009

Good & Bad

Keegan's still home and still doing really well overall. He has enjoyed lots of "cuddling" time with Rusty (the quotations are intentional; think 20 month old boy with big dog, and I think you'll understand how cuddly his time is with Rusty). His favorite pretend play right now is playing with a phone. He holds it up to his ear and babbles away. He'll hold it up to Mama's ear and babble away, and today, he held it up to Rusty's ear and said "EH!!", which I understand is baby-speak for "say something, Rusty!" He is really enjoying riding his push-trike to the park near our house after dinner when his feeding pump is off for an hour and a half. He has also had his first play-date with our friends and neighbors, Lainey, Gage, and Ainsley. Keegan and Lainey often take afternoon rides in the wagon together while their respective pups, Rusty and Reagan, take walks. But yesterday, all four kiddos (Gage & Ainsley are twins 3 months younger than Keegan) got together in Lainey's backyard. As you can see on Lainey's blog and Gage and Ainsley's blog, a good time was had by all....even if it wasn't all necessarily together. At this age, they tend to play around rather than with each other. Still, we had a great time.

In true transplant fashion, Keegan developed a runny nose and lots of sneezing today after his afternoon of fun yesterday. I know in my mind that it is the windstorm of cottonwood snowing outside our house that is causing the runny nose. Everyone in our neighborhood is feeling the effects of those beautiful but allergy-inducing trees. Our front yards have more "snow" from the cottonwoods right now than we get real snow in the winter. Still, the transplant mama in me can't help but worry that one afternoon of playing to induce some normalcy in his life didn't result in an infection. I have been trying to politely ignore God's urging to relax all day long, but it is engrained and difficult to do.

Since the last post, Keegan has busted his g-tube connections open overnight twice and thrown up once in the middle of the night. The last incident occurred during a two-day bout of not processing his feeds very well, but that seems to have resolved at the moment. Then last night, he had a transient intussusception around 11pm. An intussusception is where the intestines telescope over each other. In healthy individuals, the intestines get stuck on top of each other, and medical assistance is needed to remedy the situation. This is a very, very painful condition. Keegan, as we know, does not have healthy intestines. His are very thin, and we have literally watched him via CT scan have an intussusception and retract on his own, thus the "transient" part of it. His intestines are thin enough that they "slide" over each other and back every now and then, but it is still very painful. This is what we assume happened when he passed out on me in Boston two weeks before we were to go home. We just have to support him through it and pray that he comes out of it on his own. Still, each instance is heart-wrenching and more than a child his age should have to endure.

The dentist last week went very well considering Keegan's issues. He has 18 of his 20 baby teeth. Now we just have to work on getting him to use them to eat! No cavities, and the doctor even removed the iron stains from his bottom teeth from our misplaced efforts to raise his hemoglobin for 18 months before starting shots to help. We really liked the dentist we saw (thanks Dr. Barnes), and we'll be back every 6 months from now on. Keegan wasn't as accomodating with the new dentist as our other heart-friend, Karis, but I was very relieved at the accomodations made by the office for an immunosuppressed child who doesn't want to sit still often!

Today, I had a very productive meeting with cardiology at Children's here in Dallas to discuss the communication breakdowns that affected Keegan during the fall and winter. I have been asked to consult with the hospital to address this matter on an institutional level, and I am very hopeful and encouraged that our work will benefit many children with complex care. We'll be sure to keep you updated as this progresses.

Please continue to pray for Keegan's eating, as it is not progressing at home. Tomorrow, he will be professionally evaluated at Baylor for inclusion in their feeding therapy program. We are desperate to help Keegan progress orally and are praying for a reduction in his daytime g-tube feedings soon. Please also continue to pray for our friend, little Miss Avery and her family. Paul has endured more than his fair share of hardship since his spinal surgery almost two weeks ago, and Avery's health is as delicate as ever. Please lift this amazing family up in prayer. They remain steadfast in their faith, despite how weary they grow. Thank you so much for your support. We will be getting started on several new COTA fundraising projects soon, so stay tuned. More pictures and video soon also! Don't forget to click on Lainey and Gage & Ainsley's websites above to see recent pics of Keegan! Thanks again.