Wednesday, April 29, 2009

Update

I was intending to post a better update tonight, but the screen is wearing on my eyes. We are still about 2 hours from Nashville, and Keegan is fast asleep. He has been an absolute trooper today, although we're pretty sure his brain is mush from 4 different DVDs since about 10am this morning! We just heard on the radio that TN has its first unconfirmed case of swine flu, and it is in the county where we'll be staying south of Nashville. Arrgg. Not much we can do about a near-global pandemic, I guess. You can run, but you can't hide. Darn.

We've been mini-updating to Twitter all day today, so check it out HERE if you haven't yet. Also, just posted a few pictures, which you can see HERE! Thank you so much for your prayers today for safe travels. We're almost there! Looking forward to a day back in our old hometown, even if its going to rain on us. Double darn.

Tuesday, April 28, 2009

Very Quick Update

Quick because we are PACKING!!! That's right, Keegan got the thumbs-up (although I wish it were a bit more enthusiastically) to go home tomorrow. There were tidbits of questionable things here and there, but if we waited until all those were resolved, Keegan would be driving himself back to Texas (cred to Angie for that witty one). Although we are not looking forward to the lengthy drive, we are feeling more and more confident in our decision to drive considering the increasing spread of the swine flu. I will post an update during our drive tomorrow when I have time to write out some of the details.

Until then, please, please, please keep little Miss Avery in your prayers. Her central line is becoming problematic, and the last thing she or her family needs is a trip to the OR for a new line at this time. Please keep her loving Daddy in your prayers, as he faces medical problems of his own, and also her beautiful Mommy, as she bravely faces the very serious issues in their lives right now. Thank you, thank you.

Monday, April 27, 2009

Update

I apologize for the lack of updates. I'll make up for it here. Grab a cup of coffee, and sit for a bit! No, really...this is a long one!

We had a break in doctor visits since Thursday afternoon until tomorrow. How nice is that? Although, Keegan gave us a good scare on Friday. The weather in Boston has been absolutely gorgeous since Thursday, even a touch too warm the last two days. Yesterday, it was hotter in Boston than back home in Dallas. So, Thursday during a lapse in appointments we spent some wonderful time in the hospital garden. It has been truly amazing to see it go from barren beds to blooming beauties in the last two months. Friday, we went walking to the Public Garden, hoping to take a Swan Boat ride. The line was halfway around the park, so we just walked, enjoying the sun. It was a bit windy though, and we noticed Keegan was sneezing often and had a bit of a drippy nose. We went to lunch with my dad's business partner, who is an amazing doctor and was in town for a medical conference. By the time we got back to the apartment, Keegan's temperature was starting to climb. The skin around his eyes was extremely puffy and red; his rash was awful. We gave him some benadryl and waited for his temperature to reach the magic number where we'd have to call the transplant team. It stopped at 100.4, one tenth below the magic number. He's still a bit drippy when we're outside, but he seems to have rebounded.

In other medical news, Keegan's diapers are coming back to his range of normal (4-5 per day). We were starting to get excited that maybe the new 1-2 dirty diapers a day was going to be the new normal, which would be even closer to a healthy kid on formula. We knew that wasn't to be though because his belly was getting more and more distended, and of course, we knew it was too much of a big swing from what happened post-biopsy. At any rate, we're just happy to see him back in his own range and not so distended for now. We had his g-button replaced last Thursday with one that fits a bit tighter to his skin. We're still having some issues though, so hopefully, the doctors will have some insight on that tomorrow. Keegan's skin is one of our bigger worries right now. As we've said before, the rash is ever-present, ranging from raised blotchiness to pin-dot redness. His skin is always dry despite lathering him in Aquaphor multiple times a day, and now it seems to be raised and rough over most of his body, feeling quite like sandpaper or leather. The skin around his eyes is the most disturbing when it is angry though. For these reasons, our team here would like us to see a dermatologist. We wish we had been able to do it here, but considering how long we've been here, they are ok with us going home to see one. Keegan will probably have a skin biopsy (really easy to do) soon to help us put the skin issues in perspective with the big picture of Keegan's illnesses. As we discussed in the previous post, there could possibly be an overarching immune system dysfunction at play here that we have yet to figure out. Perhaps the rash is the last piece of the puzzle.

Saturday, we had a lovely visit from Larry & Tricia Beach, close friends of Gray's family since growing up in San Antonio. They live in the Berkshires now, and we were really wanting to go spend a weekend with them out there. However, with Keegan's little scare Friday, they decided to come see us in Boston Saturday, and we were so grateful. We had a lovely lunch at a restaurant in the North End, followed by yummy gelato. Then, we went to Charlestown and walked around and UP the Bunker Hill monument (not Keegan, just Gray, Larry, and me; funny story - there's a sign at the bottom saying not to attempt the climb if you have problems with your heart, and when I turned to Keegan saying that he was thus not allowed to go up, the jaws of the three women behind us hit the floor). 294 stairs...in a tiny, spiraling, enclosed granite staircase. Beautiful views at the top, but all I could think about was that Keegan has been hospitalized much, much too long, resulting in Mama & Daddy being much, much, much too out-of-shape. We are STILL sore from the climb! Thank you, thank you to the Beaches for a wonderful afternoon. We truly enjoyed it.

Yesterday, we started our plans for going home with the faith that the thumbs-up will be given tomorrow at our final doctors' appointments. We planned out who would take what bags (Gray and I were going to be flying on separate airlines, don't ask) and what would need to be mailed. We are supposed to be going back on commercial flights, but the CDC increased the precautions in regards to the swine flu outbreak yesterday. Boston and Dallas are major international hubs, and Dallas has a lot of traffic from Mexico. So, this morning we were in touch with Keegan's team here, who had already contacted their infectious disease colleagues about it. They think it's reasonable to be worried at this point. If they are worried, so are we; this is the same set of doctors that told us we were being silly to not want to fly commercial before this. Our new plan is now to go buy a second car seat and rent an SUV to drive home. It will be a three-day trip, stopping for a day in Nashville to rest. (Gray will just have to convince me to actually leave Nashville again...hard thing to do.)

We spent a lovely afternoon yesterday walking down Commonwealth Ave and playing barefoot in the cool grass of the Public Garden. We had dinner and sangria in a sidewalk cafe on Newbury Street once a cool, ocean breeze came in, which made us feel like we were back in Barcelona for the night. This morning is more planning, and we hope to actually get on a Swan Boat this afternoon. Just wish I had some shorts and sandals with me!

Tomorrow, we will be at the hospital most of the day. Keegan has a full set of labs in the morning, and the cardiology clinic is going to be super-busy. Then, we'll have a very thorough team meeting with transplant and GI, possibly visits from hematology and immunology too. Tomorrow afternoon, we are praying will be filled with packing, packing, and more packing. We will update again tomorrow with more information after our appointments.

We've posted a few new pictures. Be sure to check them out, and leave a comment of encouragement for Keegan going home! Also, have you checked out Keegan updates on Twitter yet? We'll probably only be updating from Twitter on our trip home. You do not have to have a Twitter account to see our updates. We apologize for having multiple websites to keep up with Keegan. Once we hit our $50,000 fundraising goal, we can have a regular blog where all this will be in one place. That's good motivation, huh? I'm planning a post about COTA fundraising soon, so keep an eye out for that. Since this is the longest post in history, I'll end by saying that we simply cannot express the immense amount of gratitude we have for your prayers during this ordeal. We are so blessed to have wonderful support for our Bug, and we pray that this is the end of our hospitalizations for some time to come. Thank you!

Thursday, April 23, 2009

Update

This has been a little bit of a difficult week to coordinate biopsy results because our cardiologist in Boston is out of town for a conference while our gastroenterologist is on service (the doctor for GI patients in the hospital). Keegan's liver enzymes in his blood are coming back down, although other numbers are still off, typical Keegan. This afternoon, the biopsy stains came back negative for EBV, the virus that causes mono. This was a concern because EBV exposure can be a precursor to the main type of lymphoma affecting transplant patients. There is a notable population of lymphocytes in Keegan's liver tissue, but I believe the current interpretation is that Keegan had some type of acute liver infection (meaning already come and gone). I say that, but the last email and phone call from Dr. Kamin suggested there may actually be an autoimmune problem afterall. This is going to get confusing fast, but the basic idea is that Keegan's immune system might be confused from being on drugs to suppress his immune system from a very young age, i.e. birth. Basically, Keegan's immune system could be attacking other organs, like his liver, gut, blood, skin, etc, but the reaction is kept in check somewhat by the fact that he is already on drugs to suppress immune responses. We will meet with our full team at the beginning of next week for further labs, evaluations, and discussions. There are a few things that may require follow-up over the weekend, but I'm not sure of that tonight.

I've posted a few new pictures to yesterday's album from the garden at Children's Hospital when were waiting on things today. We're looking forward to a lovely, warm weekend here in Boston, so hopefully, we'll have a few more pictures soon.

Also, we've set up Twitter accounts to help update about Keegan in between the times we make acutal journal entries. Most of the time, we have small tidbits of information to update, but we don't want to post a journal entry and send an email about it. Hopefully, using Twitter will let us update those day-to-day tidbits. Mama (Maddie) will mainly update on Keegan; follow Maddie on Twitter HERE. Daddy (Gray) also set up a Twitter account but won't be update as often; follow Gray on Twitter HERE. You can join and create your own Twitter account, or you can just check my Twitter updates via the previous link. There is also a link on the Welcome page.

That's all for now. Hopefully tomorrow will be more fun stuff than an afternoon at the hospital. Thank you so much for your prayers and concern regarding Keegan's liver biopsy and our attempts to get home. You are appreciated so very much!

Wednesday, April 22, 2009

Update

We weren't able to get in to see Dr. Kamin until 4:30pm today, and we didn't get labs drawn until after that. In fact, we didn't get "home" until almost 7pm from the hospital. Luckily, we spent the very nice morning touring Boston in a Duck Boat. Anyway, just wanted to update to let y'all know that we really don't have anything to update. Labs won't be back until tomorrow. The additional stains done on Keegan's liver won't be done until tomorrow, and then they have to decide what to do with the information from the additional labs and stains. There is definitely something going on with Keegan's liver, and the possibilities range from the completely benign to the not-so-benign (like that? optimism, people, optimism). At any rate, I'll be posting again tomorrow with (hopefully) more information. Other tidbits from today's appointment, we'll be shaving some time off of Keegan's feeds. This will require more volume overnight and a higher caloric density to his formula. Both of these things have been problematic for Keegan before, and we no longer have the anti-vomiting medication on board to ease the transition. Please pray that this will go smoothly because Keegan desperately needs more time off that heavy backpack. Also, we'll be weaning Keegan a bit from his oral antibiotic that only works in his GI system. This is the drug that has been the most effective in neonate transplants with GI issues like Keegan. The weaning process is very slow. This is our first big step down, so we would love for you to also pray that Keegan doesn't revert to old problems with less of this med on board.

Today, we asked the doctors if we could work on going home by next Wednesday since that's when our apartment lease is up...after being extended already for a week. They said it sounds pretty reasonable. Yeah! We will be going back in to the hospital tomorrow for a short procedure to put a different g-button in Keegan's tummy. The surgeon put one in that's a bit too long, and even with Keegan's current stomach distension (he's gaining on being as big as he ever has; please pray, if you don't mind, that his bowel settles down to his normal rate soon), the one he has in right now is gaping a bit. A g-button that's too big can cause leaking (our current problem) and irritation. This will be done easily, we pray, by the nurse practitioner in the GI clinic at some point tomorrow.

In the meantime, check out the new pictures we posted from just plain ol' being silly to our tour this morning. Until tomorrow...

Maddie

p.s. Please keep my grandfather, Poppy, in your prayers. He had an accident with a chainsaw this afternoon and needed some stitching up. Not as scary as it sounds, but still prayers are welcomed. Thank you, Lord, for having angels standing guard over him today.

Tuesday, April 21, 2009

Update

Keegan's follow-up appointment was pushed to tomorrow. Monday was a state holiday (Patriot's Day, running of the Boston Marathon), so the hospital was actually closed. Preliminary reports from Keegan's liver biopsy came back this afternoon, but we don't know much about them. Our doctor said there were some things to recheck and follow up on, so we'll learn the full deal tomorrow afternoon at our appointment. Additional testing should be back tomorrow. We won't be able to see our doctor until about 4pm EST because he is actually the inpatient attending this week. We'll have labs tomorrow also. We'll be sure to post when we have more information.

Keegan seems to be feeling better, but he's still struggling with some abnormal stooling. We are praying that he gets back to his version of normal soon. Today was a rainy, muggy mess of a day, so we just chilled inside. Daddy and Keegan are sporting their matching Red Sox gear today - will post a pic of that soon! Tomorrow I think we're going to take a Duck Tour of Boston before our clinic appointment. The remaining days of the week are supposed to be beautiful, so we are hoping to check off the remaining siteseeing items on our list while Daddy is here. It looks like the earliest we could make it home is the beginning of next week, or at least, we hope it is the latest we could be home because our apartment lease is up next Wednesday!

To wrap up this post, I thought I'd post an essay I first ran across courtesy of our congenital heart defect support group back home. I have seen it several times lately, and it is such a good expression of life as the parents of a medically-special (yes, I made that up, but it fits, no?) child. Keegan is such a blessing, and I try to make that my focus on the days that his "special" aspects seem so trying. I don't know that anyone with a normal, healthy child can ever truly understand this, but we truly appreciate you trying and praying.

HOLLAND

When you're going to have a baby, it's like planning a fabulous vacation trip- to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around...and you begin to notice that Holland has windmills...and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very, very significant loss.

But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.

By Emily Perl Kingsley, 1987.

Sunday, April 19, 2009

Green Light

UPDATE 4pm - We just arrived at the apartment. Keegan seems to be doing ok so far. We will be going in Tuesday for clinic and labs, so we'll update again then. Thank you again.
Keegan got the green light for discharge this morning. His attitude and energy are vastly improved, and his diapers are trending back in the right direction. His skin still looks pretty bad, but that has been stumping the doctors for awhile. We are anticipating liver biopsy results on Tuesday and hoping that we can be on our way home to Texas by the end of this week. We will have several rounds of labs and clinic visits this week as we deal with the biopsy results and preparing to sign off to our doctors back home.

With Daddy back in town, we are hoping to round out the last of our Boston adventures. We'll be sure to take plenty of pictures for y'all. Thank you so much for your continued love and support. I've said it a million and one times, but there truly is no way to express our gratitude for your prayers for our family.

Saturday, April 18, 2009

Update

We met with the doctor a little while ago. They don't know why Keegan's not bouncing back like he usually does after a procedure. He has been on pedialyte only all night because we got to our room after the formula lab had closed. He's been on his formula now for about 45minutes, so we'll see if that makes a difference. Our doctor will be back late this afternoon to see how Keegan's doing. We want to see him acting more like himself and see if his stools improve before they discharge us. We are hoping that the recent diapers have been the result of yesterday's events and not the start of Keegan going back into his old patterns. Keegan has been continuously asleep or up and fussy since this morning. He hasn't been awake for more than about 45minutes since he first woke up. It's still pretty early in the day, but it is not looking good for discharge today. The doctors said that liver biopsies in and of themselves don't normally cause problems such as these, but as Gray said, Keegan did have a giant needle stab him in the liver yesterday, not to mention a tube yanked out of his stomach. For now, we wait, we hope, and we pray that this is a brief visit with more answers than questions. Thank you for joining us in prayer for our awesome Bug. We love him so much, and we're so amazed at the love all of our friends and family have shown him too.

Maddie

p.s. HAPPY BIRTHDAY, LITTLE MISS AVERY!! Avery turns 4 years old today. She is such a fighter, and we are so blessed to be friends with her family. Please continue to keep her in your prayers, as her parents are currently facing some very difficult treatment decisions for her.

p.p.s. We added a few pictures of Keegan post-procedure to his latest photo album on the picture site.

Friday, April 17, 2009

Out of Biopsy

UPDATE 4/18/09: Keegan slept ok after some benadryl to ease the itch. Thank God we cut his fingernails yesterday morning because he was ripping at his skin. He continues to be unusually fussy this morning and has had several bouts of really bad diarrhea. We've already had to give him more lasix and tylenol. We haven't seen the doctor yet this morning, so we'll update again when we know more. Thank you so much.
Keegan did well during the liver biopsy and change-out of his g-tube. They were able to get a good amount of tissue to run all the needed tests, and his new g-button looks good. He had a little dependency on oxygen for an hour or two in the recovery area, but he's off it now. Keegan's having a bit of a rough night so far, and we're not sure if it's the anesthesia or what. He's a little far post-anesthesia to be having these problems (vomiting, elevated temperature, seems to be in some kind of pain, itching, etc). We had to give him an extra dose of diuretic because he hadn''t urinated since before the procedure, but it seemed to do the trick. They're keeping him on just pedialyte feeds for tonight and will redraw his labs in the morning to make sure he doesn't need blood or anything.

We are 99% sure that we won't have results on the biopsied tissue until at least Monday. Please pray that tonight's issues were just a fluke and that Keegan will be discharged back to our Boston apartment tomorrow. Thanks so much for keeping him lifted up in prayer today. We are so grateful.

Thursday, April 16, 2009

Liver Biopsy Tomorrow

Keegan's labs were redrawn this morning, and he is scheduled for a liver biopsy and changing of his g-tube tomorrow at 1pm. Both of these procedures will be done in Interventional Radiology and will require general anesthesia and an overnight admittance for observation. His liver function numbers were a little better today but still very abnormal. The doctors conferenced with us this afternoon, and they felt that it was best to proceed with the liver biopsy considering Keegan's history, his post-transplant status, and some of the clinical presentations. We fully agree with the doctors on this point. We understand that we may come away from this not knowing much more than when we went in, but the entire point of coming up here was to "cross the t's and dot the i's". Additionally, everything in the "transplant world" is done more proactively than with otherwise healthy kids. Transplant kids can present with crazy symptoms for wierd infections and autoimmune processes, and what the doctors have learned through experience is that if you don't follow through with appropriate testing, it can be too late by the time the "normal" symptoms appear. We certainly don't want to put Keegan in any greater risk of rejecting his heart or going into other organ failures. Lastly, we feel that the previous liver biopsy done at home was not analyzed completely, and the doctors think that there was a legitimate reason to look into metabolic issues as a possible cause of his problems. This liver biopsy should give us enough tissue to evaluate with electron microscopy and freeze some for future testing if needed.

The procedure is scheduled for 1pm. We have to be at the hospital at 11:30am, and we should be in his room by around 3pm. We are anticipating being back on 9South for this admittance. I didn't get a chance to ask today if they thought there would be any preliminary results back over the weekend, but I doubt it. Assuming Keegan is doing ok on Saturday morning, we should be discharged by lunchtime. Please, please pray that this is the case and that Keegan doesn't overstay his welcome this time! He continues to have a rash on his torso that won't go away, and the red bags around his eyes are back. Yesterday, he threw up after waking from his nap and seemed to be in a good amount of pain for awhile. He eventually got back to his normal self after two hours, so the doctors didn't make me bring him in. Let's hope it was just a random incident and not a precursor to something more. Please pray for that also!

Mamie made it back home safely last night, and Gray got here before bedtime. Keegan was ecstatic to see his Daddy and was doing his little happy dance for him (I have to get a video of this for y'all to see!). This morning after labs, we went down the street from the hospital to a really nice playground and enjoyed the sunshine. Keegan thinks he's much more stable than he is on his feet and took a header on the playset, gonna have a pretty good knot from that one. We posted a few PICTURES from our last day with Mamie at the Boston Common Tadpole playground and Make Way for Ducklings statue in the Public Garden. Be sure to check them out!

Thank you all for your response to our previous posts. It is nice to hear from y'all and know that you are still praying hard for Keegan. Some days are worse than others, but 99% of the time, seeing that little boy's smile is the only thing in the world that matters. We are so blessed to be able to share him with each of you and touched beyond words that you feel the same way. We'll update again tomorrow after his procedure. Thank you, thank you, thank you for your support and love.

Maddie

p.s. I keep forgetting to post this. Keegan was featured in the press release for Children's Medical Center's opening of the Legacy campus across the street from our house in Plano. Check out the article HERE. (The photo is a different kid, obviously.)

Monday, April 13, 2009

Update

Well, it doesn't look like we'll be coming home for at least another week at least. We spent 3 1/2 hours in pre-op this morning only to be told that Keegan's liver biopsy will need to be pushed to Friday. The pre-op nurses forgot to remind me when they called last Friday to hold Keegan's daily aspirin dose over the weekend. Aspirin is a blood thinner, which can increase the likelihood of post-op bleeding. Additionally, liver biopsies have an inherently high risk of bleeding, so the two are not a good combination. I don't know where my head is lately because I'm usually the one that reminds the doctors to hold his aspirin.

The other problem is that Keegan's most important labs from today, his liver function and immunosuppressant levels, didn't get drawn. Again, I don't know why I didn't ask today because I always do. I guess I was a litle stressed, in that we waited forever with an antsy 19-month-old with a ton of other germy kids around. Keegan has also now finally reached the point that he will get upset when they call his name, especially for bloodwork. And he is very strong, so with a screaming boy and seeing the two big syringes to fill, I assumed (there's my mistake) all the labs were being properly drawn. Of course, we didn't learn of these problems (aspirin and labs) until we were back at the apartment.

I'm waiting on a call back from the doctor this evening to clarify some of these things. The scheduling people called this afternoon and said there's some availability on Wednesday, so we'll be pressuring the doctors to allow the procedure then. If we do wait until Friday, Keegan will likely need two more sets of labs this week, not to mention blood draws after the fact. The other kicker to a Friday procedure is that we likely won't get any results, yet alone electron microscope results, until next week. We have already been here six weeks. I'm sure you don't need me to tell you that we're none too happy about today's events. Although, this is the first time we've really been disappointed with the care here, and it was, fortunately, not the direct fault of our primary doctors.

We will update again if the plan changes or if we get more information. Gray will be here on Wednesday. We are thankful that he will be here for this procedure and thankful for Mamie's help since she's been here. Please keep both Gray and my mom in your prayers on Wednesday for safe travels on their flights. We posted some pictures and videos of Keegan's Easter weekend. We love to read your comments there and on our guestbook here. Also, just a reminder that April is National Organ Donation Awareness Month. Learn more info on organ donation HERE. Of course, you can always email us with any questions you have, but please, please consider your preferences regarding organ and tissue donation. Let your family know your wishes...you can save lives with this one decision. Keegan is the best proof of that!

And now to go a little off subject, but I hope you will bear with me. It has been heavy on my heart this week, and perhaps something you need to hear also. This Easter was particularly difficult for me and not just because we were not at home with our family. As a Christian, I want to rejoice in the resurrection of our Savior, Jesus Christ. I want to celebrate his overcoming of death and sin and pain. I want to exult in the promise of everlasting life with the Lord. As a human, I want to despair in the medical trials my only son has to bear, every single day of his short life. I want to grieve over the loss of normalcy in his life. I want to blame God for not healing Keegan and making his burdens disappear. It would be so easy to think that believing in HIM means that we no longer have to suffer. On the contrary, it is because of our belief, because of our love for Him, that we choose to pick up and go on every day through this journey. Because every day we choose to pick up our crosses and walk with Him, knowing that He is truly the one carrying them for us...because He loves us enough to endure the nails of His Cross for us. Please pray with us for the courage and strength to continue to walk this journey together and focus on His love, not our own trials, every day.

Saturday, April 11, 2009

Update

Keegan has been cleared from a cardiology stand-point for anesthesia on Tuesday. His echo looked fine Thursday, as we expected. Monday, we will go in early in the morning for more labs and pre-op stuff. If his liver numbers spontaneously come back to normal by then, we can always cancel the biopsy for Tuesday. If not, we'll go in Tuesday morning for the biopsy and be admitted overnight for observation. We think Keegan will be back on the floor where he was before, so it will be nice to see his nurses again. The doctor said that we should expect preliminarly results from the biopsy by Wednesday, and then it will be several days to a week for the more detailed analysis by electron microscope. We've just been trying to keep busy this week in anticipation of going back inpatient next week. It had been chilly and rainy most of the week, so we didn't do a whole lot to tell you the truth. We had to go out to find some clothes to wear for Easter tomorrow, since I hadn't really anticipated being here that long originally.

Yesterday, Keegan and I took Mamie out to the North End for a good Italian lunch. It was a much nicer day than the first time we headed to that part of town. This time, we were able to walk more of the Freedom Trail. Lots of people were out and about due to nice weather and being Good Friday and all. We saw the Copp's Hill Burial ground, where the British camped out to rain artillery on Charlestown during the Revolutionary War. Robert Newman, the man who hung the lanterns in Christ Church (Old North Church) to signal how the British were coming to Paul Revere, is buried there, along with many who fought in the War. It is on a beautiful hill overlooking the Harbor and Charles River. We stopped in Old North Church, where one of the lanterns still remains with an eternal candle burning. We ate some yummy pasta and even better gelato (Keegan even sampled some)! We continued along the Trail to see the Granary Burying Ground; Paul Revere, John Hancock, Samuel Adams, and Benjamin Franklin's parents are there. We walked by the Old State House and Old South Church, where the meeting that led to the Boston Tea Party was held and Ben Franklin was baptized. Wow, it's tiring just to type it all out. Keegan was a trooper though and made it the entire day without a pacifier, which Mama accidently forgot, oops! As long as he was allowed to get out and push the stroller every now and then, he was pretty darn happy with himself.

That's about all the news fit to print right now. We're hoping Keegan will make it through Mass and a quick brunch tomorrow. Then, it's just getting ready for next week. Mamie will be going home Wednesday, and Gray will hopefully be able to get a flight up by Wednesday night. It will nice to have Daddy back with us, especially during a stressful week of tests. We just wish he could bring Rusty with him!

I still wish I had something more insightful to say at this point, but I guess I'm just stuck in survival mode. I can't help but feel that we just can't get ahead. For all the moments that feel so normal, there are worries that each move Keegan makes is an indicator of an infection or liver failure, fixing beeping pump alarms, answering phone calls from the hospital five times a day, etc. I have tried to get "used to" this being our life, being our "normal", but sometimes it's honestly just a little tiring and disappointing, frankly. I sometimes wonder if people even remember that Keegan's just a child, who shouldn't have spent the last seven months in the hospital or have to take medication every day to keep his heart and intestines from revolting. Sorry to have a pity party today, but I guess it's worse around holidays, especially ones where you're not home with your family.

And yet, we wish you all a very joyous Easter...and we hope it's warmer where you are than here! We are thankful for the love of our Lord and Jesus's sacrifice so that He could rise again to provide us with the gift of everlasting life. The promise that our trials on this earth will be forgiven in our eternal life with Him.

Maddie

p.s. Don't miss a few new pictures of Keegan from this week. We'll post some more later with our mini-egg hunt and Easter Sunday later, so keep checking!

Tuesday, April 7, 2009

Update

Sorry for the delay in posting. I hope y'all know by now that we would have updated had we had any real news. Now we do...the good and the not-so-good. Here goes...

GOOD NEWS: Keegan has been off the anti-vomiting medication since Thursday and has been tolerating his feeds wonderfully! No vomiting, no increase in the residuals in his tube, and no increase in his diarrhea. YEAH! He's taking off with the sippy cup of water, and we've even been allowed to let him "sample" a few things. So far, he's not been too keen on eating, but he enjoys chewing/spitting out and of course, smushing in his fingers. I'll put in this category that he has not lost any more weight. However, he hasn't gained any weight either. This morning at clinic, he weighed exactly the same as last week. We're going to try going up to 28kcal formula tomorrow, so please pray that he handles the additional calories well. If we can get him to start gaining just a little on a consistent basis, we can reduce the hours on his feeds (right now they run 22 hours a day). We'd love to see him able to walk around without that heavy pump backpack more often.

NOT-SO-GOOD NEWS: Keegan's liver function is getting worse. His liver is slightly enlarged, but not any more so than it was at the end of last week. As we said before, the type of liver problems Keegan has (hepatic liver disease or hepatitis; this is a different type of liver problem than when the skin turns yellow, a cholestasis) are usually caused by either alcohol abuse, drug reaction, or infection. Obviously he's not an alcoholic, and we stopped his remaining drug that may have affected his liver (the anti-vomiting med). So, we're left to looking for an infection or the remaining rarer causes. Honestly, we thought the rarer causes were being looked for after the last liver biopsy, but if you remember, that didn't happen after waiting an entire week inpatient for the results.

We have scheduled Keegan for another liver biopsy to be performed here in Boston next Tuesday. It will be done in the Interventional Radiology area, not the standard OR. This time, they will stick a big needle in through the skin while guided by an ultrasound. He will not be cut open again this time, although it will be done under general anesthesia. We are anticipating being admitted overnight after the procedure for observation only. He will have an echo done on Thursday of this week to clear his heart for anesthesia. Then, Monday we will go for the remaining pre-op labs and procedures. If his liver numbers spontaneously improve, we can always cancel. This time, our fabulous GI doc here is conferencing with pathology ahead of time to see exactly what tests will need to be run, prepare for electron microscope evaluation ahead of time, etc. We should have preliminary results by next Wednesday, with a full report finished within a week or so. The nice thing is that the docs should be able to replace Keegan's g-tube with his "button" while he's under anesthesia. His tube's gotten so stretched out!

OTHER: Keegan has what is very likely just a little sore on the corner of his mouth, but we cultured it this morning to be sure. We'll let you know if it pans out to be anything.

It is still possible that we could be home by the end of next week, but it is also entirely possible that we won't. We have decided as a family that this is something we would like to evaluate here in Boston for now. Keegan's liver problems need to be addressed quickly, and we feel that this is the best place to do that at this time. We would be loathe to return to Dallas and end up right back inpatient because we let it slide.

Needless to say, this was a very difficult decision, as we are more than ready to be home. We miss all three of us being together as a family, being able to see our family, friends, and neighbors, our house, our Rusty, Mexican food....had to throw that in there somewhere. I wish I could share something deeper than that today, but I'm pretty much incapable of intelligence other than talk of livers, bloodwork, and OR times. We are much more grateful than you know for your continued prayers for Keegan and our entire family. I feel as if it has become so expected to hear problems with Keegan's health, and we appreciate you continuing to support us through this. Thank you so very much.

We posted a few new pictures of recent Boston adventures we've had with Mamie over the weekend. Enjoy!

Friday, April 3, 2009

Update

Yesterday morning, I took Keegan in bright and early for weight, labs, and his pentamadine treatment. His weight was the same, but it was on a different scale. We're going to see what he weighs back on the cardiology scale on Tuesday. Lab-wise, not so good. His liver function is getting worse again, and these are the highest numbers we've ever seen. The only way to rule out a medication reaction now is to stop his anti-vomiting medication. We stopped it last night, and so far so good (with 2 doses being held so far). Please pray that Keegan is able to handle his feeds without this medication on board. If he does and that is the answer to his liver problems, then we'll be okay to go home as planned. The doctors are ordering a slew of more lab tests on Tuesday to be sure. The other problem is that Keegan has developed a rash that covers his torso, neck, and arms. Yesterday, he also had red bags under his eyes, but those have gone away today. The doctor thought it could possibly be related to his liver, especially if it's a virus affecting his liver also. We've begun treating it with hydrocortisone and are hoping for it to stop soon. It has made his poor skin even drier than ever. No fevers so far - so some good news!

Wednesday, we braved the foggy cold and walked around the North End. It is also called Little Italy because it was the area of town where Italian immigrants settled. As Dr. G said, you can toss a coin on any street and hit an amazing Italian restaurant. We visited Paul Revere's house. Built in 1680, it's the oldest remaining home in Boston. He lived there during his famous ride to warn troops in Lexington that British troops were marching toward Lexington from Boston. We walked part of the Freedom Trail along original cobblestone streets (a little rough for a stroller), and then warmed up at the oldest Italian restaurant in the North End. We were the only ones in the entire restaurant, so Gray and I had our first nice meal out together while Keegan napped in his stroller. After that, the sky had started to clear, so we headed back to the Prudential Tower to see Boston (and our apartment blinds fluttering where we had left the window open!) from the 50th floor.

Gray left yesterday morning for Dallas, and my mom just arrived to help out until Easter. Hopefully, things will start to calm down with Keegan, and we will be home by the end of the week after Easter. The weather is rainy and cold here today, but hopefully, we'll have a nice weekend and be able to walk around with Mamie. Hope y'all's weekends get off to a good start! We've posted a few new siteseeing pictures, too. Don't forget to leave a message for Keegan. We can't tell you how much it means to us to know that y'all are praying and following Keegan so faithfully. Thank you, thank you.

Wednesday, April 1, 2009

Update

Keegan had a much better report at clinic yesterday morning. His liver function was improving, his electrolyte levels were stable, his red and white counts looked great (for him), and one specific type of white cell that he has never, I repeat never, had normal levels of were NORMAL! The doctors think his improving blood counts are directly related to decreasing his immunosuppression levels, and I have to say, that is very difficult to argue with at this point. His hydration seems fine, considering the number of big ol' crocodile tears he shed during the blood draw, which was ironically I think the fastest blood draw he'd ever had. The phlebotomist felt his vein once, stuck the needle in, got what she needed (2 full syringes), and got out in the blink of an eye. Gray and I looked at her and said, "what's your name again?" We WILL be having her as our personal phlebotomist the rest of our time here!

Unfortunately, Keegan's weight was down yet again. He has his breathing treatment scheduled for 7:30am on Thursday, and we will get a weight and more labs then. If his weight continues to go down, the doctors would like to try increasing the calories of his formula once more. He continues to have on average 5 or more stools a day, but they look so much better than before (what you wanted to know, I'm sure). Anyway, we're encouraged that his bloodwork is stable and he appears to be properly hydrated. By the looks of it, he should be gaining weight based on his output, labs, and the amount of calories he is currently getting. We're definitely for trying to increase his formula before TPN though. The doctors do not want to add any additional volume, as he is already pretty much maxed out where he is now. In fact, we may be able to start taking hours off of his feeds (meaning more time disconnected from his tube/pump) if he starts maintaining his weight or tolerates increased calories.

The best news of all at clinic was that if all goes well through next week and a last echo at the beginning of the following week, we should be able to go home!! That would be just about 3 weeks outpatient! YEAH FOR KEEGAN!! So obviously, this is our prayer request for now. We would love to have a relaxing rest of our time here with good reports, more improvement, and be home before the end of April....for GOOD.

Don't forget to check out his picture and video site! There's a video with an exciting development and more siteseeing pictures. We went to the New England Aquarium on Monday. Gray and I enjoyed it, but I think Keegan needs a few more months to really get it. Still, he is becoming more interested and less scared of other kids. In fact, most of the time was spent diverting him from touching other babies! We also visited Fanueil Hall in the pouring rain. That might have been more interesting had it not been so nasty outside. Yesterday afternoon, we chilled inside after spending most of the day at the hospital. Keegan really enjoyed sitting on the couch with Mama and Daddy watching Bolt! (Thanks, Denise!) We have to say that we enjoyed it too. If the rain stays away, we're headed to the North End and Little Italy today.

Thank you so much for your continued prayers for Keegan. Once again, please keep little Miss Avery in your prayers too. She was admitted for blood transfusions again and really needs your prayers for her improved health. Thanks.