Sunday, March 29, 2009

Update

Keegan is still thankfully outpatient. The labs drawn Friday afternoon that were back by the evening didn't look much different, but as our doctors said, it is difficult to admit him based solely on labs. Thank God for that! I know that it is due to your prayers that he has NOT thrown up again since Friday night! We measured his belly tonight, and it is back to his normal range. That makes us all happier, for sure. Our GI doc here called this afternoon and left the ball in our court whether or not to keep Keegan's current clinic appointment for Tuesday or to come in tomorrow. Keegan hasn't had any fever, and other than some transient pain (which isn't unusual for him to have his "pain episodes") and some extra fatigue, he hasn't had any fevers or been too "off". So, we are still scheduled for a full cardiology+GI clinic visit which will take most of Tuesday morning (labs, chest/abdominal xrays, EKG, doctor visits).

We are very thankful to have stuck to our family outings this weekend. Saturday, we went out to the JFK Presidential Library in the morning. It was a beautiful but cold morning on the Harbor. We came back for a late nap and cooked our first dinner in our apartment. Today was cut short by rain, but this afternoon, we were able to get out to the Church of Christ, Scientist across the street from our apartment. We missed the actual church because Keegan (luckily) took a long nap, but we were able to see the Mapparium in the Mary Eddy Baker Library. The Mapparium is a complete map of the world done in stained glass and completely spherical. You actually walk through the world. It's absolutely amazing, but we weren't allowed to take pictures. Click HERE for some more info on this amazing globe. Because it's glass, sound bounces off the walls of the mapparium. Two people standing on the opposite ends can whisper and hear each other as if they were standing right next to each other. If you stand in the middle, you can hear yourself in surround sound. The other beautiful aspect of the Mary Eddy Baker Library was the Hall of Ideas. It's so amazing that I can't even put it into words. Click HERE to read about it, and click on Keegan's video link below to see a video we took of the "Ideas" evolving.

This evening, we walked around the mall at the base of the Prudential Building, but we didn't go to the top due to the inclement weather. We went to Mass at a chapel run by the Oblates of the Virgin Mary that was in the mall!! It was actually very nice and was so well attended that people were standing in the aisles. Thank you to Father Collins for cluing us in to that one. It was actually the first time we'd all been to Mass together as a family since last spring. We are really trying to get Keegan out more on the advice of our transplant cardiologist, including going out to dinner at Legal Sea Foods tonight. Awesome crab cakes! Even though the doctors said to take him out, doesn't make it much easier to relax though!

Tomorrow we're headed to the Aquarium and Fanueil Hall, one of the first places the Declaration of Independence was read to the public. In true American consumerist style, it's now a "marketplace" (read tourist trap). Oh well, I guess we'll see! Thank you so much for your prayers for Keegan to help us keep him outpatient. If we can make it through next weekend, we will break his record of being outpatient since August 2008 (11 days)! For now, check out the pictures and video from our recent excursions! Have a wonderful weekend, and thank you, thank you, thank you!

Friday, March 27, 2009

Update

Keegan definitely needs your prayers now. We did end up going in for a lab draw this morning. He had handled his overnight feeds fine and woke up in a good mood. He handled his lab draw pretty well, and we noticed the sun coming out from the clouds. We decided it was the perfect time to take Keegan to Fenway. We took the very abbreviated tour (basically a video in a luxury box because there was so much construction happening before opening day next weekend). Keegan fell asleep during the tour, so we grabbed a quick bite at the beer brewing company next door during his little nap . We then enjoyed another great, early-spring-in-Boston walk around the Emerald Necklace park back to our apartment.

We arrived back at the apartment for a bit, during which we received a call from our GI doc here. Keegan's liver function was really poor in his labs today. They asked us to come back to the hospital to check some things. Keegan's liver didn't seem any more enlarged than before. His belly has become majorly distended again though. Since he didn't have a fever or "act sick", they decided to redraw some labs and let us go. Evidently, the type of liver problems Keegan has are usually triggered by an infection or drug reaction. Until now, we had attributed it to TPN because we couldn't pinpoint an infection. He's been off TPN now for a week, and before his discharge, his liver numbers were close to normal. The only medication he's on now that has ever been shown to cause liver problems (and we're talking only 1 case ever) is, of course, his anti-vomiting medication. Now, he's been on it long enough that it should have been problematic before, but we did just increase his dose recently. As you can probably guess, stopping this medication to help his liver will likely bring the vomiting back big time, which will likely necessitate being readmitted in order to prevent dehydration. Keegan's heart is extremely sensitive to dehydration or fluid overload, and the doctors would have to monitor him closely.

So, after this nerve-wrecking meeting with his GI doctor and transplant cardiologist, we grabbed a cab back to the apartment. We had just gotten out of the cab when Keegan started throwing up again. At least he didn't throw up IN the cab! From the scene on the street and the amount we vented out of his g-tube, it was obvious Keegan hadn't processed much of anything since around lunch. The doctor said to stop his feeds again until tonight. We should hear back about his afternoon set of labs before 9pm tonight about what the plan will be regarding his anti-vomiting medication. Our GI doc did say that if Keegan throws up even once more the "plan will have to be reevaluated".

Needless to say, we would really appreciate your prayers for Keegan's health tonight. He also had a scary little episode after the vomiting incident where he was shaking pretty good. We don't think it was anything serious, but until we're sure, please continue to pray. We were already planning our weekend excursions and would really like to be able to spend this time exploring Boston as a family. Thanks again for your prayers. We'll update with some more pictures of the Green Monster soon!

Thursday, March 26, 2009

Update

Ok, so Keegan technically made it 27 days without vomiting. We had a really great morning, exploring Boston Common, the Public Garden, and Newbury street (that's LOTS of walking, y'all) before the rain set in this afternoon. We made it back to the apartment for Keegan's nap. He started retching and coughing every now and then after his nap. We had a nice visit from Judy Maggard, a friend from Baylor, who brought him a great bear and Baylor hoodie. Not 20 minutes after she left, the onslaught ensued. And it was big. Although he seemed to feel much better after it was over and his feeds had been stopped.

We emailed our GI doc here, who (again, I am in such awe of this man...Chelle, you are so right about him) emailed me back in 10 seconds flat. What would the world be like without Blackberry? Anywho, we may go back in for labs tomorrow. Evidently there was a miscommunication, and our cardiologist wanted labs today. Oops. We'll restart his overnight feeds and see what happens. We may have to go back up on his oral antibiotic that was reduced upon discharge. Still no fever. That's good because I hadn't posted that when the PICC line was pulled, there was some bright green discharge around the site. We thought it was going to be cultured, but we haven't heard about that yet. Since the PICC was the last thing done as we were walking out the door, we basically said "call us if there's a problem" and walked out. No fever, no problem...yet. So, please pray that the green stuff doesn't come back to haunt us tonight.

We've posted a few new pictures of Keegan's last day at Children's Hospital Boston, our temporary apartment here, and our first day of sightseeing. Thank you SO much for your prayers. Lest you wonder if they truly work ... Sweet Aaron was discharged yesterday! Miss Avery's parents are on the road to recovery, and she has not shown symptoms of getting the virus yet! (Please continue to pray for her though, as her labs are problematic at this time.) Little Summer is fighting hard and hopefully will be on her way home soon! Thank you, thank you for your prayers for these dear children and their families.

Tuesday, March 24, 2009

Outta There

Exactly 20 days at Children's Hospital Boston. That's all it took to get Keegan on full feeds and no TPN, mainly a simple switch in formula and an oral antibiotic. And we couldn't be happier!

We arrived at our apartment just before 5pm, and we quickly grabbed a cab to Target for some supplies. We still have some unpacking and organizing to do, but we're so happy to be in a place to call our own for awhile. I'm looking forward to cooking again ... although I'm probably pretty rusty after a 7 month break. We're hoping to get back to our own little version of "normal" soon, but most of all, a night of no nurses or vitals or IV pumps! Yeah!

We'll post more tomorrow and some pics of our new digs. A few non-Keegan prayer requests tonight, if you please. We are praying for our sweet friend, Aaron, to respond well to his diuretics tonight and show NO fluid in his chest tomorrow, so that he can make his way home from Children's Boston too. Also, please continue to pray for little Summer, who is still fighting her first post-bone marrow transplant virus, a very scary time for her family. Lastly, please keep Miss Avery's family in your prayers. She is feeling better, but her parents are now ill. Avery's body cannot handle any more right now, so please pray that the whole family will be safe soon. Thank you so much for keeping all of these little fighters in your prayers.

Tonight, in appreciation of our nurses and docs in Boston (and all our dedicated nurses and docs that are still following us from home), I leave you with the verse that has given me such joy today. Good night!

"Then the King will say to those on His right, 'Come you who are blessed by my Father; take your inheritance, the kingdom prepared for you since the creation of the world ... For I was a stranger, and you took me in ... I was sick and you looked after me ... I tell you the TRUTH, whatever you did for the least of my brothers, you did for ME." Matthew 25:34-40

Monday, March 23, 2009

Update

I'm going to make the update about Keegan short today because there is something important to include at the end. First of all, it's apparent we don't have many cool friends because only a handful of y'all have posted comments to his pics and guestbook! What are ya waiting for? As cousin Brittany & her hubby Clint said, you don't want to miss out on be one of the COOL people!

Keegan's been TPN-free for three nights now. He seems to outwardly be handling the feeds well enough (no vomiting or massive increase in diarrhea), still he has lost weight consistently for the last few days. We're not going to freak out yet, just give him a little bit more time to see how he does. We are busy getting things in order to be discharged TOMORROW!! Yeah!! We secured a short-term, furnished apartment about 1 mile from the hospital that is absolutely beautiful...AND cheaper than a hotel! The few cheaper, hospital-run places we looked into were all shared facility places (i.e. you get your own bedroom but have to share bathrooms, kitches, tv areas, etc). Fine if it were just Gray and me but totally not acceptable for an immunosuppressed, neutropenic kid. The apartment we were able to get is certainly nicer than any apartment and most hotels where I've ever stayed. The only other odd thing with Keegan is that he doesn't seem to be responding to his GCSF again with his ANC dropping way into the severe range in between doses. Again, we'll just wait and see.

Now, for the important part of this update. The Congenital Heart Futures Act was introduced in both houses of Congress last week. If you get email updates from Keegan, you will get this twice. (If you don't yet get email updates from Keegan, email him at keeganharrison@yahoo.com to be put on the update list.) The Act guarantees more research funding for congenital heart defects. The letter below explains more. Please take a few minutes to write your representatives in support of this Act. You can cut and paste the below information into emails to spread the word and to write your Congressmen. Keegan thanks you from the bottom of his spankin'-new-no-rejection heart! ;)

*********************************************************************************************************

Thanks to all your letters, emails, and visits, and the efforts of the National Congenital Heart Coalition and at the American College of Cardiology, last week the Congenital Heart Futures Act was introduced in both houses of Congress! In the Senate, Senator Dick Durbin of Illinois led the charge joined by Senator Thad Cochran of Mississippi. In the House, the bill's lead co-sponsors were Representative Zach Space of Ohio and Representative Gus Bilirakis of Florida. We are thrilled that this groundbreaking piece of legislation has already received bipartisan support.

To learn more about the bill visit: http://durbin.senate.gov/showRelease.cfm?releaseId=309944

However, we still need your help. Like any piece of legislation, the Congenital Heart Futures Act has to get majority support in both the House and Senate in order to be passed. Please email your Senators and Congressman today to ask them to become a co-sponsor of this legislation, which is bill S. 621 in the Senate and H.R. 1570 in the House.

It just takes a minute - here's how you do it:

1) Go to http://www.senate.gov and http://www.house.gov/ to look up your representatives and their email addresses. (In Texas the Senators are Kay Bailey Hutchison and John Cornyn.)

2) Draft your email - (Templates included below)

3) Make your letter personal to you. The template has a place to add two or three sentences about why this legislation matters to you personally, and offers some samples to help get you started.

**NOTE FROM THE HARRISONS: We have included a paragraph about Keegan if you would like to include it in your letter.
4) Send your email. Be sure to include your full mailing address as well as your email address. Don't use US mail, since thanks to the anthrax scare it now takes many weeks for mail to arrive in Congress.

That's all there is to it! Please forward this email to friends and family to request their participation.

TEMPLATE:

Dear [Lawmaker name here]

I am writing to ask for your help in making a brighter future for all those born with heart defects. Recently, the Congenital Heart Futures Act, legislation calling for research, surveillance, and education in congenital heart disease, was introduced in the Senate by Senators Durbin and Cochran and in the House by Representatives Bilirakis and Space. I am writing to ask you to co-sponsor these bills (S. 621 and H.R. 1570)and help all those born with heart defects live longer, healthier lives.

Congenital heart disease is this country's number one birth defect and kills twice as many children as childhood cancer. Although many children now undergo successful heart repair, most will require special life-long care and face high risks of developing additional heart problems. However up until now, there has been virtually no federal investment to address the research and education needs of the 1.8 million Americans now living with congenital heart disease.

-----

[Insert 2-3 sentences saying why you care - your own story or here's one about Keegan:]

My friend (grandson, neighbor, great-grandson, nephew, cousin, etc), Keegan, was born with a severe congenital heart defect and underwent 10 hours of corrective surgery the day after he was born. Still, he had to be placed on an extensive form of life support for nearly a week and ultimately needed a heart transplant to survive. He is currently the smallest and youngest heart transplant recipient in Texas. I want to be hopeful for his future, but right now I know there is a severe lack of research, awareness, and resources available to enable him to thrive as he gets older. Please help me help my friend to survive and become a healthy, productive American.

-----

To sign on as a co-sponsor of the bill, House Members should contact Dan Farmer with Rep. Space at (202) 225-6265 to discuss support of H.R. 1570. Senators should contact Sara Singleton with Senator Durbin at (202) 224-2152 re: S. 621.

Thanks in advance for your help in securing a future for all those living with congenital heart disease.

Sincerely,

[name]

[full mailing address]

[email]

Saturday, March 21, 2009

Update

Just a quick update. Keegan's been handling the feeds SO well. We are just amazed. I told our admitting doctor that I was almost embarrassed at how well it went, considering we'd been so insistent on the fact that he could never handle the calories before now. Again, he reassured me that they were well aware they came in on the tail end of things and that they truly believe the oral antibiotic is the ticket in this neonate heart transplant patients that develop intestinal problems. Also, he thinks Keegan will continue to do better with the Elecare formula, as it is so much easier to digest. He is now at his full volume and calorie goals of formula g-tube feeds, even with up to 30ml/hr overnight! He hasn't thrown up in almost a month! Floored, I'm just floored.

All that being said, tonight he will not be getting his TPN for the first time intentionally since October. We will stop the TPN for the foreseeable future and see how he does. I'm concerned about this because even with his TPN, he hasn't been steadily gaining weight. In fact, he's not gained any weight other than slight daily fluctuations since the beginning of March. We'll see how he does over the weekend, and if he maintains his weight, we'll likely pull his PICC line out after his last dose of IV antibiotics on Monday. We could foreseeably be discharged on Tuesday to our "Bostonian home" for about a month. Again, if he struggles in the least bit with his weight, hydration, or nutrient levels, we'll discuss the next step to take, whether it's putting a port back in for TPN or changing his tube to be fed directly into his intestines.

Please continue to pray that Keegan does well over the next few days without TPN and that our stay in Boston ends in a nice little vacation before coming home for good. Gray arrived back in Boston this afternoon, and Keegan was so happy to see him. My sister, Alex, left late Thursday afternoon, and we had a great time with her also. It was so nice to have my family here while Keegan had several anesthetized procedures and while we were stuck in a hospital room far away from home. Thanks so much, Alex!

Check out the few new pics we posted today, sorry there aren't more. There's also a new video of Aunt Alex and Keegan having fun at the hospital! I'll steal a line from a friend of ours (her daughter is also inpatient now, so please keep little Summer in your prayers; she is a bone marrow transplant survivor and is fighting her first virus post-transplant)...all of the COOL people will check out Keegan's pictures and leave him fun comments there or on this guestbook to read later! ;) Have a great rest of your weekend!

Thursday, March 19, 2009

A Little Clarification

Ok, so after a few questions from some of Keegan's devoted fans, I realized that I needed to make some clarifications to the post about the plan. The question I was asked most was, "obviously, we've been trying to increase Keegan's feeds and get him off of TPN for awhile now, so what's so different now?" A few things actually, so here goes:

1. We switched formulas to one that has medium-chain triglycerides. Fat takes the longest for our intestines to digest; in order to properly absorb fats, they must slow down and "sit" in your intestines for a bit. When Keegan eats regular fats or even long-chain triglycerides (like his previous formula), his intestines can't handle them and basically flush them out as fast as possible, resulting in diarrhea. We don't know why he does this, but by switching to the new formula with fats that don't have to "sit" so long in order to be digested, we have lessened the diarrhea...and hopefully increased his absorption of nutrients through his gut, not IV nutrition.

2. We altered his anti-vomiting medication to be smaller amounts more often during his feeds. One of the effects of the medication is that it "stretches" the stomach and allows it to accomodate more volume. This means more volume and less vomiting, especially overnight.

3. We added the oral vancomycin (antibiotic). When we started this med, I was skeptical that it would do anything because we were never able to identify any infection or unusual bacteria in his gut. However, the doctors here have treated several other heart transplant patients that developed intestinal problems, and all of them responded to the oral antibiotic. Usually this would be a 14-day course, but with these transplant kids, they've kept them on it for much longer at a lower dose and very, very slowly weaned it off as the gut adapted and healed. They honestly have no idea why it worked, but it did and really that's all we need to know.

4. Lastly, Keegan might not be able to follow the plan as we've devised it. It's very possible that we stop his TPN, and he can't maintain his weight, hydration, or nutrient balance. In that case, we will put a permanent line, like the port he had before, back in for long-term TPN. We may also change the type of feeding tube he has to feed directly into his intestines or do more motility studies. We've simply agreed that the best way to try all this is by discharging him from the hospital but staying in Boston while he's followed closely for awhile longer.

Hopefully that makes things make a little bit more sense. So far, he's doing much better than ever before simply with his volume and calories. Today, we increased the caloric value of his formula to 26kcal, and he's tolerated it just fine so far. He hasn't been able to do that ever before! Yeah for Keegan! The day isn't over yet though so please continue to pray that he will tolerate the feeds. If all goes well, we might be able to be discharged by the middle or end of next week. We're working getting a place to stay and all the supplies we'll need in line for our stay in Boston.

Thank you for your words of encouragement so far. It has been easy to "talk the talk" about putting our trust in the Lord that He would pull Keegan through this long and tedious illness, but there have been times where our faith has lagged. That's when we are so grateful for your love and support. It lifts us up and reminds us that we were never promised an easy road, simply the grace and love of our Lord as we traveled upon it. Thanks again!

Wednesday, March 18, 2009

Could it be a...PLAN??

Well, I think we actually have a plan for Keegan's teatment for the first time in the last 143 days we've been inpatient since September! Yes, you read that right. We had a very productive meeting with Keegan's team this afternoon, and while it is a bit ambitious, I think it is feasible. Here's a quick summary:

1. Increase g-tube feeds of Elecare formula - Originally, their numbers called for 24 hours of feeds, 12 hours of higher volume during the day, 12 of less volume at night, at least 26kcal formula. He can probably handle the daytime volume fairly well, and he's pretty close to his goal per hour already. The night feeds are standing in our way. Maybe he'll make it to the 35ml/hr goal fine with the anti-vomiting medication he now takes, but it seems unfathomable to me. We'll see how he does. If he handles a 5ml/hr jump in his overnight volume tonight, then tomorrow we'll try the 26kcal. This is what we are most nervous about feeding-wise, so please pray that Keegan can tolerate it this time.

2. Decrease and stop TPN - Tonight, we are cutting Keegan's TPN to only 8 hours. BIG step down from 14, and it's half the previous volume. Ultimately, the doctors would like to see Keegan reach their feeding goal by sometime next week, stop his TPN altogether (yes, you read that right!), and take out his picc-line before he is discharged hopefully within the next week to 10 days. Which brings us to....

3. Follow-up care - Obviously, we want Keegan out of the very germy, infection-risky hospital, and we want him off TPN. The doctors are hopeful we can get both of these accomplished within the next week or two. What they're not sure of is how he will handle being on just tube feeds without TPN support at home. SO, that means they are requesting we stay in Boston for up to a month after our discharge to be followed on an outpatient basis by GI, cardiology, and hematology. We weren't wholly surprised by this request, but it's still a little disappointing. However, we absolutely don't want to go home to Dallas prematurely and end up right back in the hospital. If spending spring in Boston means we get to go home FOR GOOD this time, then hello opening day at Fenway! We will likely have two to three clinic visits a week while here to watch Keegan's bloodwork and weight very closely. If he struggles at all with his weight, hydration, and/or nutrients and blood counts, then we'll go back to the OR for a new port and go home to work on feeds with TPN support.

The last noteworthy point from the meeting is that Keegan's heart is in good shape, but he'll be on a small daily dose of diuretics to keep it pumping strong for the foreseeable future. If we can resolve his GI issues to cardiology's satisfaction, we'll drop his immunosuppression further in an attempt to help his white blood cell count stay up. Today, he was back in the severe neutropenic range, but the rest of the week should be better with his GCSF altered just a touch. His red counts are holding thanks to the blood from last week.

That's the plan for now. Gray and I are very nervous about the next month or so, to say the least. This is very ambitious for Keegan, and this timeline is considering he takes off like a rocket with no set-backs in the process. Please pray with us that the setbacks are few and that we are home in Dallas to stay in the not so distant future. We couldn't have made it this far without the love, support, and prayers of our awesome family and friends, and we are so grateful and humbled that you would continue on this long journey with us.

Maddie

p.s. Thanks for your help this week, Mama! Keegan's going to miss his Mamie for sure!

Tuesday, March 17, 2009

Update

Keegan has a PICC line now, but we're not too happy with it. This is really, really hard to explain to people who have never seen or dealt with one. It kinda looks like a massive IV line coming out of the crook of his right elbow. It starts right there at his elbow, and the lumen (ends where IV lines are connected) literally end right just past his little hand, making it the perfect length to grab and swing. We tried turning the lines and threading them up his shirt sleeve (it is still in the 40s here in Boston), but the lines got kinked or occluded. It is so big that there's a nice-sized hole in his skin where it enters. They've tried to secure it with a little device, some clear dressing cover, and tape, but it still eeks in and out just enough to irritate that area. Maybe we'll get used to it, but I am just despising this thing right now. I can tell Keegan doesn't like it when it's hooked up either. He's been asleep for almost an hour now, and I've already unwound his line from around him twice and cleared four alarms for kinked lines. Not fun.

The placement of the line went ok overall. The first problem was that his last remaining IV blew at about 5am while he was sound asleep and hadn't moved a muscle in over an hour. Who knows. Because of his vomiting issues and vein problems, he had to have general anesthesia yet again and be re-intubated. This time, they were able to use a softer intubation tube, so at least his throat wasn't so scratchy. It took about 40 minutes longer than the time the radiology team said would be their longest estimate. They had a bit of trouble threading it all the way through his vein to a main artery, but they said it's in there. Then, his oxygen saturations dropped again coming out of anesthesia. This time, he just needed an oxygen mask to come back, no cannula. Thank you, Lord. Right as we were getting ready to come back to the room from the recovery area, his blood pressure started dropping, but it just gave us a good scare and came back up. No other intervention necessary. What a day!

Tomorrow, we have a big meeting scheduled with all of the specialists on Keegan's case here at 3pm EST. Gray will hopefully be able to join the discussion by conference calling. This is a big day for us, trying to figure out the plan from here. With no truly permanent access point, I am feeling like we are back at square one yet again. Keegan has tolerated 45ml/hr for a few hours the last two days, and he's tolerated some much lower volume feeds overnight without vomiting. However, his diarrhea is unchanged, and the next step is to increase the caloric value of his formula, where we often see the biggest problems. Our discussions tomorrow will focus on how we help that aspect because adding more volume to his feeds does very little if he is not absorbing the proper nutrients from the formula. Obviously, he will need TPN support as we work this out, hence the PICC-vs-port debate. I calculated out this evening that to simply maintain his current weight without TPN at the current caloric value of his formula, he would have to take at least 41 ounces a day! I don't even know how much he would have to take to start consistently gaining weight. Nor do we want him connected to an IV pole 24 hours a day at this point in his development.

Please pray for wisdom, clarity, and open discussion at our meeting tomorrow. Thank you, as always, for your continued prayers for Keegan. We are still very happy and feel very lucky to be here at Children's Hospital for Keegan's treatment. However, we can't help but feel anxious and wary of how to proceed. We have been fighting this battle for so long, that it is easy to lose our focus and our hope that this will ever be behind us. We just can't thank you enough for lifting our family, especially Keegan, up in prayer during these trying times. More tomorrow after the meeting.

Happy St. Patrick's Day!

Maddie

Monday, March 16, 2009

Update

The port removal itself actually went well today, despite the fact that we were rushed off to it unexpectedly this morning. All night long, I would ask the nurse if she had heard a time from the OR with no luck. At 5am, the surgeon came in to talk to me, but Keegan stirred and was uncomfortable, needing his g-tube vented. The surgeon's specific wording was "I'll come back in an hour or two" and walked out the door. Silly me, I took this to mean I could close my eyes for a bit longer. Then at 6:45am, the nurse throws the door open and declares that the OR is ready for us now. Geez. At least she let me have five minutes to brush my teeth and change out of the sweats I had been sleeping in.

Keegan did just fine with the anesthesia, but as we expected and feared, they had difficulty getting the IVs. The OR nurse said they started having problems with the lines as soon as they placed them. One was in the crook of his left wrist, and the other is half-way between his right wrist and elbow. Both are extremely positional and finicky. Keegan has been pretty low-key all day, a lot like after his cath/biopsy. We've propped him up on his pillows and let him spend the day watching Elmo and Madagascar. That was working until he hit a little pain episode, threw the IV sleeve on is left wrist completely across the crib, ripped the IV out, and proceeded to wail as he bled all over himself. Down to one IV. So the nurse tried to flush the one on the right, just to reassure us all it was there and working. No such luck. We paged the IV team, and the nurse who came in was able to save the remaining line...for now. Needless to say, Keegan is back on the OR schedule to have a PICC line placed tomorrow.

We really needed two days of IV access to make sure the infection was completely clear. Evidently, when you pull an infected line, some of the latent bacteria can be released back into the bloodstream. As I explained before, the bacteria had formed a film on the plastic of his port. It will attack new plastic in Keegan's body, so we were trying to make sure the bacteria was gone before placing a more permanent line. So, we'll proceed with the PICC tomorrow. A PICC can actually last quite some time in people who understand how to be careful about it being in their arm. Keegan doesn't know not to run around on his lines, roll over in his crib, throw toys around the room, pull on foreign objects coming out of his skin, and/or wave his hands in the air like he just don't care. We would love to be able to keep a PICC for awhile, but after today, I'm just not seeing it. I don't think our admitting GI doc thinks he'll keep the PICC either, since he walked in on the bloodbath this afternoon.

Please pray that the PICC placement goes well tomorrow, and more specifically, that Keegan does well with yet another dose of general anesthesia. We're running the second dose of post-port-removal-big-gun-antibiotics right now, and two was the minimum we needed to feel somewhat satisfied of clearing the infection. Unfortunately, Keegan's temp started climbing as I have typed this, so please also pray that it stops dead in its tracks. We can't get a PICC with a fever. Thank you so much for your prayers today. We are just so grateful for each and every one.

Sunday, March 15, 2009

Update

Just a quick update tonight to let y'all know that we still don't have an OR time for tomorrow. Since removing his line should be fairly quick, he will likely be squeezed in between procedures tomorrow, and our time could change anyway. He had a pretty good day today. We increased his calories to 24kcal/hr around 4pm, so he got about 4 hours of it. He didn't increase his frequency too much today, but he took a downturn in his processing (a bit waterier than before). We can't decide if he's bored or tired half the time, probably a combo of both. I think we are all feeling that way.

I had a very nice conversation with our admitting GI doctor, who...GET THIS...called me from home at 9am on a Sunday!!! Can you believe that? Just to see how Keegan had tolerated the formula changes so far! Such an amazing man. Anyway, I digress. I told him how we felt some of the team were thinking Keegan would just take off with the feeds and be TPN-free by the end of the week. As much as we want to be optimistic, I told him that Gray and I just didn't see how that was possible, given everything he has been through and shown us in the last 7 months. His response was very reassuring. He said that no one truly thought Keegan would be able to go without a permanent central line, but (1) it never hurts to stay positive, and (2) they have to try the least invasive methods first, i.e. peripheral IVs and a PICC line. He assured me that they would not let Keegan lose too much weight, get dehydrated, or be in pain. Definitely what I needed to hear as we head into a very uncertain week.

We will let you know how tomorrow's procedure goes. Please pray that Keegan handles the anesthesia as well as he usually does and that they are able to place two IVs in good veins. For the rest of the week, we would ask that you join us in praying to clear Keegan's infection and for strength and comfort for us all as we decide what is the next step for our Bug. Lastly, we would really appreciate it if you would keep our little friend, Aaron, and his parents in your prayers this week. He had his second (and hopefully last) heart repair this week here in Boston, and he is experiencing some bumps in the road. Please pray that the uncertainties of this weekend will come to light soon, for clarity in his treatment, and that he gets to board that plane home as soon as possible! Thanks so much.

Don't miss the new pictures we posted of Keegan's first week in Boston. Also, scroll down the page to see a video from a few weeks ago that we just posted. It will definitely make you laugh!

Saturday, March 14, 2009

Update

We have had a pretty quiet few days, as expected. Keegan has tolerated an increase in the volume of formula to 45ml/hr during the day, and last night, we ran 20ml/hr overnight ... with NO vomiting! Yeah!! Today, we increased the calories in his formula from 20kcal per ounce to 22kcal. Since all this began, we have not been able to get past 24kcal. Tomorrow, we'll progress to 24kcal if he does well overnight. Then, he'll once again stop his feeds in anticipation of surgery on Monday morning to remove his infected port. The surgeons came by this morning and confirmed that the surgery is still on for Monday as long as now fevers crop up.

So, for now the immediate plan is to have his current port removed, and the surgeons will put two regular IVs in his hands/arms before he comes out of the OR. The hope is that he can keep these IVs to use for half-strength TPN for at least a few days. Unfortunately, Keegan can blow an IV just by breathing wrong, so no one anticipates these will last very long. If we do lose the regular IVs, the next step is to put in a PICC line. You may remember, we tried this with Keegan back in October before he got his port. A PICC line can be used for full-strength TPN, but they are just like a really long IV line. The last time Keegan had one, it became dislodged within 24 hours. The hope is that Keegan will start tolerating enough formula in the next week to not need TPN anymore. Most of you who have followed our story for the last several months will understand that the likelihood of Keegan being able to go from 14 hours of TPN to none in a few days is highly unlikely. Especially because in order for him to gain weight on formula, he would have to tolerate much more volume at a much higher caloric density than he currently does.

We would absolutely love that this would happen so quickly and easily. Realistically, no one thinks it will. We would much rather start turning the TPN down more and more as he takes more and more formula/food. That would be the safe, reliable way to do it. Unfortunately, we don't have that luxury. Keegan will have to go "cold turkey" for at least two days to make sure this infection is completely cleared. The doctors are completely prepared for this trial run not to work, and we're already planning another care conference for the middle of next week to discuss the next steps. We will try to push Keegan as much as possible to take his feeds without TPN, but we are extremely nervous about making sure he is not uncomfortable, in pain, or most importantly, losing all the weight he worked so hard to put on since November.

That's about it for now. Thanks to my mom being here, I was able to go get my hair cut this morning (LONG overdue). Big thanks to the brother and sister-in-law of one of my childhood friends who brought us some good ol' Tex-Mex for dinner tonight. It's supposed to be in the mid-fifties tomorrow and sunny, so we're hoping to get Keegan out in the fresh air. My sister will come up Monday, and Gray should be back in town by the end of next week. We are looking at least another two weeks here, and as much as we love our docs and nurses here, we sure hope it's not too much longer than that!! Thank you, thank you for your prayers. I'll post a short update tomorrow when we have details fro Monday's surgery. Hope you're having a wonderful weekend, wherever you may be!

Wednesday, March 11, 2009

Update

Keegan had a very rough night between the blood, diuretics, "clean out" formula for the scopes, and two enemas. He tolerated the blood well and needed it for the scopes. They took a LOT of tissue to biopsy, and he bled for a bit afterward. The doctors didn't see anything remarkable in his GI tract during the scopes, but we didn't expect they would. What we are really curious and anxious about are the biopsies. The doctors will be preparing the tissue this weekend to evaluate under the electron microscope (no, for real this time!) and hopefully will learn something from looking at the cellular structure of Keegan's intestinal tract. Those results should start coming back next week. Today, the doctors received the slides from Keegan's previous scopes and liver biopsy to use as a comparison also.

The biggest news of the day though by far is that Keegan had ZERO rejection in his heart biopsy!!! YIPPEE!! That's actually better than last September. The cardiologist still thinks he needs a few more days of diuretics to help his heart a bit. Some of the immunology labs are starting to come back too. The immunologist said that alot of those numbers are abnormal but unfortunately not in a way that indicates what's wrong. They will continue to run some additional testing and said even if they don't figure it out, they could continue researching it for months.

The other good news is that the next four days should be fairly quiet with no procedures scheduled until Monday. We will continue to work on increasing his feeds and resting up for surgery Monday to remove his infected port. Unfortunately, we have to start back over at the beginning since he hasn't had any formula through his tube since Monday. We just can't say thank you enough for lifting Keegan up in prayer the last few days. They have been hard on all of us. We're so grateful for our wonderful family and friends who have been so generous on our journey. We'll update again tomorrow. Looking forward to a slower night tonight!

Tuesday, March 10, 2009

Update

It's been a very busy day, and we still have a long night ahead of us. Gray left early this morning to go back home for work. Keegan did well during the cath. They decided to do general anesthesia rather than sedation because of (1) his vomiting/reflux problems and (2) how his oxygen levels dropped last week with sedation. He came out of anesthesia just fine, if only a little ornery. His red counts were low going in, and they dropped drastically while in the cath lab. Needless to say, he's getting tanked up on blood as we speak. We are waiting on his biopsy results still, but we should have them by tomorrow. His coronary arteries and pulmonary veins looked perfect. However, his heart has not taken well to the extra volume of TPN we've been giving him lately to help his kidneys (or one good kidney, as it were). The heart generally likes to be a little "dry", while the kidneys like to be "wet." It's a delicate balance we've been fighting with Keegan since day one. Since his heart has been dealing with extra fluid, it is acting "stiff". Therefore, his blood output was a little low. It all should resolve if we go back to a lower volume of fluids, and we'll jump-start helping his heart by starting him back on lasix (diuretics).

We are still scheduled to repeat his upper endoscopy and colonoscopy tomorrow. There are quite a few extra tests they are planning to run off of the biopsied intestinal tissue that have not done before now. We've started him on a "clean-'em-out" formula until 3am to clear the way for the scope.

Keegan was a trooper as always today. He's quite lethargic and tired for now, but we've got him all propped up on some pillows and watching the "Best of Elmo". Thanks for your prayers today. I need to get back to Keegan now, as it's just me for the rest of the night. Mamie (my mom) is coming tomorrow, and my sister will come up the beginning of next week. Then at some point probably late next week, Gray will return to Boston. Tomorrow, I should have time during his procedures to write up some more info about where our plan is going after this. We were quite nervous about the cath and biopsy today, so we truly appreciate you lifting us all up in prayer today. Have a good night, and we'll update again tomorrow. If it's not too much to ask, please pray for our sweet friend, Miss Avery. She is once again battling a virus, and it is a very hard battle for her little body. She had a bad experience with a viral infection last year, so we ask that you also remember her parents in your prayers tonight for them to be strong and comforted in Him tonight. Thanks again.

Monday, March 9, 2009

Change of Plans

We had a slight change of plans today. Keegan was scheduled as the third cath of the day, and the transplant cardiologist insisted on Kegan being transfered to the transplant or cardiology floor post-cath. Well, the bed she had reserved for Keegan somehow was given to another patient. Needless to say, we didn't get his cath and biopsy today. We've rescheduled him for the first case tomorrow, and he will spend most of the day in the cath recovery suite. Then he can come "home" to the GI floor, so the book on "will he or won't he be transferred to a different floor" is now officially closed. We will let you know about the cath/biopsy results as soon as we know something. The best case scenario is that he continues to have very little rejection, and we might be able to reduce his level of immunosuppression.

Also, most of the interventional radiology team is at a conference this week, and we need them to be available when we pull Keegan's infected central line. So, we're now waiting to schedule that for next Monday. This means Keegan could possible redevelop his infection at any point until the dirty line is out. Please pray that he remains stable as we wait for next week's surgery. The line removal presents us with many other problems that we will explain as we go through this process. At least for now, it's a problem for next week. Just pray he stays fever and sepsis free for the next week.

Wednesday, we will repeat Keegan's upper endoscopy and colonoscopy. This time the tissue will be looked at under the electron microscope and a bunch of other analyses that haven't been done before now. We are still working on increasing his feeds. No increased problems so far with the Elecare, but no real improvement either. He didn't throw up with his overnight trial last night, but we vented about 4 hours worth of feeds out after it was over. That means he didn't really process anything while he was asleep, but at least he didn't throw it up either.

Immunology came by to consult today. They are digging through the tests that have already been done and will probably order a few more. All of Keegan's immunoglobulin levels are still elevated. His white counts were way low again today, after only two days off of his GCSF. We started it back up again today and will try to go back on a 3x/week schedule. Lastly, we should be getting a visit from the motility specialists this week to discuss his reflux, dumping, and delayed emptying.

Thank you for your prayers thus far. We are still very encouraged by the doctors and treatment here. We also had a visit today from Father Ross, a friend of Fr. Postell's, who really lifted our spirits and united us in prayer tonight. Please, please, please pray with us that his cath and biopsy go well tomorrow and that he stays fever-free for the next week until we can get his infected line out. Thank you so much. We hope you each had a great start to your week.

Sunday, March 8, 2009

Update

We've had a pretty quiet weekend, gearing up for a very busy week ahead. So far, Keegan has tolerated the Elecare formula well - no vomiting or increased diarrhea. In fact, he went 24 hours without a stool at all, which scared me to death. Lots of kids with GI problems vary between chronic diarrhea and chronic constipation. I don't like Keegan's diarrhea, but I really don't want to start dealing with constipation. It also scared me because Keegan's belly distention had gone away while he was off all of his feeds from Tuesday night until Friday night. It hurts me to see his tummy so big, and it was SO nice to see it normal again. His belly has swollen up just a bit with the Elecare feeds but nowhere near where it was last week when he was on his old Neocate formula. We had initially agreed to allow one trial of overnight feeds to see if he would tolerate them better on the new anti-vomiting medicine. The trial was supposed to be tonight, but Keegan is going to have an anesthetized procedure tomorrow (more info on that in a sec). That will require stopping his fomula g-tube feeds at midnight. It still should be enough to gauge the vomiting, as it continued before with as little as 45 minutes of feeds after he fell asleep.

The only other change we made this weekend was to start an oral form of the "big gun" antibiotic (vancomycin) he is getting for the central line infection. Now he gets the antibiotic in three forms - intravenously through his port for the line infection, an "antibiotic lock" of his line (a mix of vancomycin and heparin to lock his line when his infusion is done; this is in an attempt to kill the film of bacteria that has likely colonized on the plastic catheter of his port), and an oral form that goes through his g-tube. The oral form only works in his GI system, doesn't make it to his blood stream. Evidently, the IV form only works in the bloodstream, not his GI tract. The theory behind giving him the oral form is that there could, on some remote planet, be an infection in his GI tract causing the diarrhea that (1) we haven't seen from his prior scopes, (2) hasn't caused any visible intestinal inflammation, and (3) hasn't been caught by the 10 million stool and blood cultures we've drawn. It is extremely unlikely, but there are very, very few side effects to the oral form and might as well cover all our bases at this point. The only effect we've seen so far has been that he gets very quiet and lies down in his crib with his paci and puppy for about 20 minutes after each dose. Nothing terrible, just pretty unlike our fiery Keegan.

Now the plan for the week:

1. Monday - heart catheterization and biopsy. This is to absolutely rule out rejection or infection in the heart as a cause of the GI symptoms. If he gets a big thumbs up on the biopsy, we can discuss lowering his Prograf levels to perhaps help raise his white counts.

2. Mid-week - Surgery to remove infected port/central line, place temporary line for use until infection is officially clear, and repeat upper endoscopy and colonoscopy.

3. Sometime during the week - Immunology consult, GI motility consult (there is an entire group of docs here that just deal with motility problems - this could include a full neurological work up and more testing), discuss necessity of changing Keegan's g-tube to a g-j tube. We'll explain more about this if it happens, but basically we'd bypass his tummy and his feeds would go straight into his small bowel.

Lastly, the decision was made today to leave Keegan on the GI floor. The nurses and docs on the floor have had a conference with the cardiac transplant team and discussed how to deal with possible heart problems that may crop up. The agreement was made to leave him here unless the biopsy shows something important, and he will be moved immediately to cardiac should any questionable heart issues arise. That's fine by us - we really like the attending on this week, and the GI doc we came to see is truly being the "quarterback" of Keegan's care that we have been needing. I guess a co-quarterback because the transplant cardiologist here is just as involved.

That's about all the news fit to print at this point. We were able to get a room at a place for out-of-town families run by the hospital called the Devon Nicole House. It's kind of like a hostel with a small room for a bed and nightstand and shared bathrooms. It's cheap though, and only one of us goes back at night since the other stays with Keegan. When Gray goes back home for work, we'll lose our spot, but there are plenty of options like it around here. Today we actually had quite un-Boston like weather with sunny skies and highs in the upper 50s. We went out to the garden, even though nothing is blooming quite yet. It was nice to get some fresh air, and let us all stretch our legs, especially since the snow is supposed to return tomorrow.

Thank you so much to each and every one of you for your unwavering support and inspiring faith. We are so eternally grateful for the love you've shown our little family. Today was the celebration of the Transfiguration of Christ. The first reading was Abraham being asked to sacrifice his Isaac on the mountain. Abraham trusted the Lord so much that he was willing to follow through with the sacrifice of his only child if asked, and Isaac trusted his father so much that he was willing to lay down on the altar even knowing the consequences. The Transfiguration or appearance of the Risen Christ to the apostles revealed the promise that our trust in our Father is not misplaced. He offered Jesus, His Only Son, for us, and Jesus so trusted his Father that He was willing to suffer on the cross for us. We hope and pray that we can so fully trust in Him and His great love for us that we are willing to place Keegan, our only son, in His healing and comforting hands. Thank you for praying with us tonight.

Maddie

CONTACT INFO AT CHILDREN'S HOSPITAL OF BOSTON:

Keegan Harrison

Main Building, 9 South, Rm 9116

Children's Hospital of Boston

300 Longwood Ave

Boston, MA 02115

Room Phone - 617-355-3950

Friday, March 6, 2009

Update

Keegan had a very long day today. He slept pretty well overnight - just the usual diaper changes, vital checks, and venting his g-tube to ease his discomfort. He seems to be quite fond of the super-soft mattress in his crib here. We woke him up early because he was supposed to be taken down to the cardiac floor for a sedated echo around 9:30am. We didn't want him waking up at 8:30am just to be sedated an hour later. That was to no avail because as is the want of every hospital everywhere, we didn't get down to the echo lab until almost 10:30am. To answer your question, yes, he did have an echo Monday before leaving Dallas, but they wanted another one with their own people and machines as a baseline. No big deal. Keegan's heart function still looks good, and they still didn't see any evidence of his infection reaching his heart. He fell asleep with the sedation medication right away, and he slept right through the echo. Here, they allow the kids to sleep off the meds in their own time, whereas at home we have to wake him up as soon as the echo is over. He wasn't as much of a "mean drunk" when he woke up because of it. However, he scared the daylights out of us when his oxygen saturations plummeted after the echo was over. We tried an oxygen mask to no avail and ultimately had to put nasal cannula back on him at a pretty good rate to get his sats up. SCARY! That's the first time he'd needed oxygen since he was a month old. Seems he was just in a really deep sleep though, and he was absolutely fine when he woke up. And much happier than other times coming out of sedation.

Then, we went to have the gastric emptying scan we couldn't get in Dallas. To no one's suprise, the test showed that Keegan does not empty food out of his stomach at a normal rate. However, the medication we started him on a few weeks ago to help with the vomiting has also helped speed up his tummy's processing because it wasn't nearly as long as when he did the upper GI series the other week. The test was very helpful because it shows us that the vomiting medication is worth keeping but that we still have motility issues to work out.

We had a visit from hematology. The daily GCSF treatments finally worked their magic today to bring his white blood cell count and ANC up, so he'll get a break from the daily shots until Sunday. Interestingly enough, the hematologist here said that recent studies and even several cases here at this hospital have shown that Keegan's immunosuppressant, Prograf, actually CAUSES neutropenia (low numbers of baby white blood cells) in some patients. That was a true "duh!!!" moment today. She said that if we can ever switch Keegan off Prograf, his neutropenia should improve. However, the only other drugs available for Keegan haven't been researched enough to have them be his only immunosuppression. Maybe in a few years that research will come along, and his blood issues will be a thing of the past. This hematologist also thinks Keegan's anemia is due to his intestinal problems - solve that, and he may not need as many transfusions. We've thought that for a long time, just a little easier said than done.

Keegan's transplant cardiologist here wants Keegan to be on either the cardiac floor or the transplant floor, rather than the GI floor where we are now. So, another room change is probably going to happen over the weekend. They have assured us that things are different here and that this is actually a good thing. It means the GI doc we came here to see can actually follow us every day instead of the continuous cycle of GI docs here, and his transplant cardiologist is also VERY hands-on in treating non-cardiac problems in transplant patients. That just makes my heart jump for joy! She and our GI doc here have even worked together before to treat a little girl with very, very similar issues to Keegan. Ironically, that little girl was the last patient our transplant surgeon back at home, Dr. G, transplanted before she left Boston years ago! Small world, huh?

Our plan for the weekend is to start Keegan on a new formula that is often given to kids with short bowel syndrome, called elecare. No one is expecting miracles, but it is worth trying. We've agreed to let them feed him over night at least one night, just so they can see what happens. Next week will be equally as busy, and since this post is already extremely long, I'll explain more of "the plan" tomorrow. In the meantime, check out the pictures and video we posted of Keegan's trip to Boston! Have a great weekend, and we'll update again tomorrow. THANK YOU, THANK YOU for your prayers ... I can just feel them working!

Thursday, March 5, 2009

Keegan Update: Live from Boston!

Hello All…

This blog update will cap off a very good but long day. Keegan slept well for the most part last night. He woke up a few times with some air that needed venting but there was no vomiting. He woke up this morning around his normal time ready to watch Elmo just like he was home or at CMC of Dallas.



We started the day with lots of visits from the doctors. The GI attending and fellow came by first thing to tell us that they had heard from the hospital in Dallas that the cultures from his port taken on the 3rd had grown back positive. We thought this was kind of strange since we had been over 48 hours before we left with negative cultures. They have continued with his “vanc” (high big gun antibiotic) in the meantime. They also stopped by to let us know that we were having a meeting between the cardiology and GI department attendings today around 1pm. This was going to be their first chance to sit with us and go over what they had reviewed from their records. We also got a visit this morning from the infectious disease fellow. They als wanted to speak to us about his port infection.

We will write more about the specifics of what we have seen about the hospital later but before we walked into our meeting I saw the wildest thing. Right outside our room there was a woman playing the harp (yes… a harp, Disney songs in fact…) as we walking into our meeting. Apparently that happens quite frequently. It was very relaxing but a little strange. Believe me… I can get used to nice live music, but it caught me by surprise.

Another nice note before the meeting... Our nurse told us that the attending and fellow on the GI side had been in the conference room all morning doing nothing but preparing for our meeting by pouring though Keegan’s records. She said they have done nothing else pt fill up two large white boards and toss around ideas about his care. Maddie and I were impressed and glad to see they were jumping into things so quickly.

The talk with the doctors went well today. Maddie is so much better than I am abut keeping up with the specifics and the history of what Keegan has been through. I try but I really don’t compare. I really think that meeting gave the Doctors a sense of just how much research she has done on Keegan and his case. We spoke a lot about his infection. It sounds like the short term goal is to put an antibiotic lock on the central line when it is not in use while continuing the “vanc.” They have had some success with that. While we are waiting and watching on that end they wanted to discuss looking for an alternate site for his central line incase it would need to be replaced. They haven’t made that call yet but since it was so tough to find a spot last time they figured they would need to start that early.

We discussed the diarrhea next… they have decided to start Keegan tomorrow on a different elemental formula that we haven’t tried before. It is called Elecare (I think). The hope is that they might see some change over the weekend. If they don’t then they may look at replacing his g tube with a g/j tube. They would use the same hole he already has but the tube would actually be in two parts. One would go to his stomach and the other to the entrance of his intestines. They hope to see an improvement with his motility issues. We discussed a few other things in the meeting but pretty much what I have told you holds true for the short term goals.




We finished the day with the sonogram looking for the new central line sites. That went well, and Keegan fell asleep. Tomorrow he have another echo in the morning, and we are planning to start the elecare formula after that. In the meantime it is getting late so I am going to wrap this up. Maddie promises to post pictures from the trip and the hospital soon. We have some great videos too.




Thank you so much for the prayers… Little man continues to hang in there. Busy making new girlfriends in Boston!




Goodnight,

Gray

Wednesday, March 4, 2009

Safe & Sound

We all made it to Boston safe and sound on one of the coldest days of the year. I got here before the boys did and started the long process of getting the team here updated. Gray and Keegan made it to the hopsital just before 5pm. According to the transport team, Keegan was the best little traveler. It will still be a few days before the doctors can get their feet under them and figure out where we need to go from here. Keegan came with a lot of medical records, and they will have to really do their research in order to know what hasn't been done and what we should try. Things are going well so far. The people we've met so far are very nice. The hospital is quite busy but clean and neat.

We'll post more tomorrow once we get our bearings. Just wanted to let everyone know we are here and hopefully on the right road now. Gray took a ton of pictures that we'll try to post tomorrow. Our picture site is blocked by the hospital wifi network, but we'll hopefully be able to access it through a wireless card. We can't thank everyone enough for your well wishes, prayers, and support. More tomorrow...Good night!

Tuesday, March 3, 2009

Beantown

It seems if you hand people all the work they should have done on a silver platter, all cut up in easy bite-size pieces, miracles do happen. One of the administrative directors of the hospital who works with me on a hospital committee came by yesterday. She kept saying how all the work I did to get Keegan to Boston was their responsibility, and I shouldn't have had to do it. Well, if you have known me for any length of time, you know I don't sit on my hands and wait for you to get things done. It's why I never felt comfortable having a secretary or asking my court clerks to do something I could do myself. I guess it's why I don't wait for a nurse to come fix Keegan's IV pumps or change his line dressing. If you want something done right (and not 6 months down the road!), you have to take matters into your own hands.

That being said, KEEGAN LEAVES FOR CHILDREN'S HOSPITAL OF BOSTON TOMORROW MORNING AT 7:30AM!! He and Gray will have medical air transport on the Children's jet. The team will pick them up bright and early, and then I will hop on a commercial flight to meet them there with all our stuff. It's getting late, and we have a terribly early, long day ahead of us. I will certainly update when we are there, and we are planning to take plenty of pictures along the way. We'll be sure to post them when we're up an running tomorrow.

Big thank yous to Chelle, Dr. Barnes, Susan D, Sandra M, and Dr. G for your help in putting me in touch with the right people. We couldn't have done it without you. Big thank yous to my friends Angie and Laura T...without your support, I might not have stayed sane enough to get through this. And BIG thank yous to each and every one of you, especially our family, who have supported us and prayed with us through this process. We understand we may not get any more answers in Boston as we have had here, but we have to try. We appreciate your prayers for safe travel and comfort on the journey.

Next post from Children's Hospital of Boston!

Maddie

Gray's grandmother provided the perfect verse for today:

Trust in the Lord with ALL your heart and lean not on your own understanding; in ALL your ways acknowledge Him, and He will make your paths straight. Proverbs 3: 5-6

Monday, March 2, 2009

Update

Wow, talk about crazy. I apologize in advance for not updating yesterday, but when the "stuff" hits the fan, it's messy and not easy to put into words...at least not on a family-oriented journal! Although I know there are those of you who are interested in and concerned about the mismanaged nightmare we've been experiencing lately, suffice it to say that we've let everyone know where we stand now. Strings we didn't want to have to pull have been pulled, and we are finally getting the cooperation we have been needing.

First, important health info. I was wrong about his line infection. Keegan's peripheral blood draw (from a vein, not his central line) also grew back positive for staph. Again, it is a common staph found on our skin and a constant battle for people with central lines, especially the immunosuppressed. It is not generally one that results in sepsis or severe illness, but it unfortunately has a tendency to build a film on plastic, i.e. Keegan's port. You can treat the infection in the blood, but there's not much you can do to get rid of the colonization on the line itself. Hem/onc generally treats through these types of infections and lives with them. However, Keegan has now met the magic number of three infections, and we will have to discuss soon the possibility of needing to pull his port and place a new one. You may remembr that this is a difficult decision for us. Although Keegan has only had two lines before this, his prior surgeries, cannulizations, catheterizations, and life support measures limit the number of access points we have. We're not to that point yet, but it is something that has made our ability to have Keegan transferred a little more dificult. That's about the only change medically for now. His bloodwork is still all over the map, spleen's still enlarged, and still not responding the way they would like to his GCSF. Of course, he still has all his ongoing GI issues also.

I hope not to jinx it by putting it in writing, but we should be on our way to Children's Hospital of Boston on Wednesday. We personally did a lot of work on getting it all taken care of over the weekend and lit some fires today to get the rest of it worked out. We are meeting with the transport team tomorrow to discuss details of the flight. Keegan had an echo today to make sure his heart was ok before we flew out, and it looks beautiful. We cannot thank God enough for protecting the most important part of our Bug! Ok, more info tomorrow. Got a little boy drunk on sedation from his echo to take care of now. Thank you so much for your prayers.

Maddie

p.s. HAPPY BIRTHDAY, BIG DADDY!! We love you!