Thursday, January 29, 2009

Update

Keegan has finally turned a corner early this evening. He had 5 morphine boluses and 4 loratab doses, but after his thrid nap today, he woke up feeling so much better. His incision seems to have stopped bleeding, and we clamped his g-tube and have finally heard his bowel starting to move again. We may try some pedialyte through his tube tonight. One nice side effect of the surgery, is that it caused a temporary paralysis of sorts in his GI system, giving his bum a much needed break from the diarrhea. He started sitting up this afternoon, and when Gray came up tonight, Keegan stood up for the first time. It's really nice to see him with his clean cheeks - a full smile for the first time since October!

We have a little bit of news from yesterday's procedures. We should have a final report by the beginning of next week. First of all, the surgeon noted that Keegan's intestinal wall was quite thin. This surgeon has done about half of Keegan's surgeries. He has seen Keegan's intestines during surgery when he was much younger, and he has done countless abdominal surgeries on kids. (Interesting note - Keegan has had 9 surgeries, 2 of which involved heart-lung bypass; 7 additional surgical procedures involving general anesthesia, and 6 more involving sedation.) We don't know what to think of this finding just yet. We don't know if it's a contributing cause to his symptoms or a result of his other GI issues. The surgeon thought it may be related to his steroid therapy and immunosuppression, but the GI docs don't think so. We'll see.

As for the liver, we are waiting final results from the pathologist. We learned that his liver (not quite ready to use the word "failure" yet; let's say "compromised liver function") is NOT related to his TPN, injury from ECMO, or a virus. The preliminary findings indicate that his liver may give an answer that encompasses many of his symptoms. The pathologist needs to do some further testing and staining over the weekend. Once we get the final report and learn more about it, we'll let you know.

We know that's a terrible cliffhanger, but we appreciate you trusting the doctors and us in sharing what we know. Thank you so much for walking this road with us. We really appreciate your prayers, especially this weekend as we wait in hope that we finally have an answer to help Keegan.

As many of you who have followed Keegan's journey in this journal know, my favorite prayer for Keegan is in Psalm 138, the Hymn of a Grateful Heart...and for good reason. The last week has been very difficult for me, as I allowed myself to despair about continued bad labwork, unhelpful scope results, and Keegan's increasing discomfort. I once again turned to Psalm 138, finding comfort in the words I've said so often for Keegan. Catholic scholars interpret the Book of Psalms (the Psalter) as a form of essential, innate, meditative prayer. Pray them over and over again, and the Lord reveals Himself in a reassuring, comforting way. For the first time last night, I kept reading past 138 (usually I stop, consumed with my thoughts of Keegan, medical reports, and our trials) and prayed into Psalm 139. It reassured me in many ways, and perhaps you will benefit in the same way I did. I wish I could thank you all enough for praying for Keegan - and all of us.


PSALM 139: 1-18 - THE ALL-KNOWING AND EVER-PRESENT GOD

Lord, you have probed me, you know me: you know when I sit and stand; you understand my thoughts. My travels and my rest you mark; with all my ways you are familiar. Even before a word is on my tongue, Lord, you know it all. Behind and before you encircle me and rest your hand upon me. Such knowledge is beyond me, far too lofty for me to reach.

Where can I hide from your spirit? from your presence, where can I flee? If I ascend to the heavens, you are there; if I lie down in Sheol, you are there too. If I fly with the wings of dawn and alight beyond the sea, even there your hand will guide me, your right hand hold me fast. If I say, "surely darkness shall hide me, and night shall be my light" - Darkness is not dark for you, and night shines as teh day. Darkness and light are but one.

You formed my inmost being, you knit me in my mother's womb. I praise you, so wonderfully you made me; wonderful are your works! My very self you knew; my bones were not hidden from you. When I was being made in secret, fashioned as in the depths of the earth, Your eyes foresaw my actions; in your book all are written down; my days were shaped before one came to be.

How precious to me are your designs, O God; how vast the sum of them! Were I to count, they would outnumber the sands; to finish, I would need eternity.

Wednesday, January 28, 2009

Update

UPDATE - 5:20pm: Had to give more pain medicine. We asked to avoid morphine again if at all possible, so we tried something a little less potent. Keegan developed a high tolerance for many pain meds in his first month, so we try to avoid them when possible. He's been in pain or asleep since we got back to the room. We're praying he'll be doing better when he's ready to wake up. There's some blood draining into the collection vial connected to his tube, but they don't seem worried yet. We've also had to give him a medication to help his blood clot better since his liver isn't doing a very good job of that right now. We will continue to check his levels throughout the evening to ensure he's not had further damage to his liver from the biopsy. Thank you for your prayers.
UPDATE - 12:45pm: Keegan is back in his room. He seems to be having a harder time with coming out of sedation this time and is quite uncomfortable. We're hoping he will be able to "sleep it off" without more morphine. The surgery went well, no complications. It will be a few days before we have biopsy results, and the doctors need to consider some of the surgeon's findings regarding the state of Keegan's intestines. We will update again later. Thank you for lifting Keegan up in prayer during his procedure. We are again grateful for a successful, complication-free surgery.

Keegan is in the OR. They will put in a g-tube, do a liver biopsy, and an exploratory inspection of his intestine and abdominal cavity. We do not know how long the surgery will take, but we'll be sure to update when he's back in the room. Thank you for your prayers during this time.

Tuesday, January 27, 2009

Update

UPDATE 9:45pm - Still no time for Keegan's surgery. While Keegan is our surgeon's only scheduled case tomorrow, he is on call for emergencies. We're hoping it will be early in the morning, but Keegan could be bumped by an emergency. We'll let you know when he's in the OR. Thanks.
Keegan will be put on the surgery schedule for his G-tube and liver biopsy tomorrow. We did not get the answers we were hoping for from the capsule endoscopy and bone marrow biopsy. We do not have a time for the surgery yet tomorrow, but we'll let you know when we do. Thank you for continuing to pray for Keegan's procedures and comfort. We are running out of ideas at this point, but we are trying to remain hopeful that we will find out what is wrong soon.

Sunday, January 25, 2009

Update

Keegan has had a pretty quiet weekend. He passed the capsule camera yesterday, so we don't have to worry about having to surgically remove it next week. Again, we may get results on Monday afternoon but probably not until Tuesday. We should have the bone marrow results on Monday though. Once we do have the capsule results, we will schedule Keegan's next surgery for the g-tube placement, liver biopsy, and any follow-ups indicated by the scope. Other than that, Keegan's battling a pretty terrible diaper rash due to all the diarrhea. He continues to throw up at least once a night. There doesn't seem to be a consensus on why the relief bag is no longer working for Keegan, but we're hoping that getting the g-tube directly into his stomach this week will alleviate some of the vomitting. For now, we've stalled in increasing his feeds at 9ml/hr, and we've reduced his overnight feeds to 3ml/hr.

That's about it for now. I just wanted to put up a quick post to let you know Keegan's still fighting. Please, please continue to pray that this capsule endoscopy will provide much needed answers for Keegan. All the doctors are firmly on the same page that Keegan's symptoms are an inflammatory reaction of some type. We are hoping this capsule scope will help us find the source of that inflammation. We ask our gracious and everloving God to guide Keegan's care, extend His healing hand, and provide comfort for our precious boy. Thank you so much for loving Keegan and keeping him lifted up in prayer.

Friday, January 23, 2009

Update

Keegan did well during the procedures today. The GI doctors were able to drop the capsule without much bleeding. They did not notice any changes in his esophogas or stomach from the last scope. Keegan has huge leads attached to his stomach and back which connect to a large computer box. We are using a heart monitor bag so he can move around a little more freely with the box. The box will be removed tonight around 10pm, and Dr. Barth will download and examine almost 1000 pictures of Keegan's small and large intestine on Monday. We anticipate Keegan will pass the capsule soon, but if it becomes lodged, they can remove it next week when he goes back to the OR for his g-button and liver biopsy. On a different note (one very exciting to his doctors), Keegan has yet another record to his name. The GI fellow confirmed today that Keegan is the youngest and smallest baby in the United States to have a capsule endoscopy. Doctors in Boston did a baby that was just a little older and only half a kilo more, but Keegan takes the cake. We told the doctors that we'd rather have results than records, but it made them happy for the day.

The bone marrow biopsy went well. Because Keegan is a bit bigger than he was in November, they were finally able to get a sample of the bone, and they think the marrow sample was better this time too. By the time the procedure was over, it was after lunch, so we won't get those results until Monday afternoon either.

Keegan's not feeling great tonight, but he's such a little trooper. Thank you for lifting Keegan up during today's sedation. We greatly appreciate you continuing to pray that today's procedures will provide the answers we so desperately want for Keegan. Have a wonderful weekend.

Capsule Endoscopy & Bone Marrow Tomorrow

Keegan was supposedly on the schedule for his capsule endoscopy at 9:30am, but "Children's Time" is in full swing. Here it is at 10:15am, and no clues as to when we might be going down. Also, hem/onc decided they'd rather do his bone marrow aspirate and biopsy today, rather than next week. The biggest plus is that we should have some reports on that by Monday. We will let you know when Keegan is out of the procedures.

Keegan tolerated the blood well last night, and his bone marrow was very happy with it. His red counts are beautiful this morning, perfect for anesthesia. And drum roll please.....Keegan's white count and ANC are the highest they've ever been (except the first few days post-transplant)!!!! I just love posting good news. The GCSF finally started to kick into gear, and the blood transfusion also helps stimulate the bone marrow to kick out new white cells. The combination was exactly what Keegan needed. We're going to forge ahead to the next step of our "GCSF goal", every other day injections at half strength. Ultimately, we'd like him to be on every third day injections, and Gray and I would like to see him go back to IV form, rather than shots. One step at a time. His liver function is not good at all today, but we are going to look into that next week.

We appreciate your prayers for Keegan during today's procedures. We ask Keegan's angels to guard him closely and guide his doctors in their work. As always, we pray that our Lord sees fit to reveal some of Keegan's secrets through these tests. Thank you so much. More later.

Thursday, January 22, 2009

Update

The care conference went pretty well today. We don't have any more answers, but we have a better plan. Keegan will have a capsule endoscopy tomorrow. If he were an adult, he would swallow a capsule with a tiny camera in it that will travel all the way through his GI system, taking pictures along the way. Since he can't swallow a pill, he will be placed under general anesthesia, and the GI doctor will drop the capsule past his stomach using the endoscope. Keegan should pass the capsule in about 4 hours, and then it will take a day or two to interpret the results. We are mainly looking for a source of the chronic inflammation Keegan seems to be having. I'll explain more once we have the results. The next step will be a surgical procedure early next week. Keegan will go to the OR to have a G-button (feeding tube directly into his stomach) put in, a liver biopsy, and a second bone marrow aspirate and biopsy. The G-button is a fairly simple procedure and the liver biopsy will be done laparoscopically. We do not have an actual day for this procedure yet. We have to get the results of capsule endoscopy before we do the surgery. We continue to await follow-up immunology bloodwork and repeats of some of the other GI bloodwork that cannot be done until tomorrow.

Keegan will be getting a very large amount of blood this evening. His counts have dropped into the transfusion levels, and he will need to be "tanked up" before anesthesia. It's not the most he's ever had, but we'll be running it over a shorter time to avoid shorting him on any of his TPN. Please pray that Keegan handles the volume well. The GCSF has finally kicked in to the point that we have reduced his dosage back to what he used to get, but we will remain on daily injections for at least a few weeks to see how he responds. Also, we were wrong about the 7-day course of antibiotics. Hem/onc asked for it to be extended for 14 days considering Keegan's low defenses, the severity of the infection, and the fact that he has had 2 in the last two months.

For now, please continue to pray for guidance for Keegan's doctors, answers from the upcoming tests, and strength for Keegan as he faces these battles. I so wish that I could put into words how much your support and prayers mean to us. I have heard many stories lately of Keegan's story touching lives way beyond what we thought was possible, and it truly is a reminder that God's work is not merely in our own individual lives but in weaving together the souls of many to magnify His name. While I pray for answers, comfort, and healing for Keegan, I can also offer up my burdens knowing that He has a plan for each us that extends beyond our simple lives on this earth. God may have given us free will, but He guides us together in a magnificent way back to His Son. We are blessed to know how our Lord is using Keegan is making a difference in the lives of others.

Wednesday, January 21, 2009

Update

Just a short post today. We have some of the immunology labs back, and they're not exactly what we were hoping to see. There are a few other labs GI has run also that came back with questionable results. We have scheduled a care conference with his docs (GI, cardiac transplant, immunology, hem/onc) and his surgeons (general and cardiac) for tomorrow afternoon at 1:30pm. We will discuss all of these labs, talk out some of the theories, and schedule Keegan for some sedated procedures for next week. I'm sorry I can't be more clear than that, but (1) I don't have a clear enough understanding of what's going on yet; (2) we don't know what it all means (or doesn't mean) until we get all the "heads" together, and (3) I'm not really in a place yet that I can share all of this. Please keep Keegan, his doctors, and our family in your prayers as we face try to understand the clues that God is giving us for Keegan's care. I promise we will let you know when we know something and are ready to put it out there. We just need your faith and prayers now as we continue on in this journey.

Keegan is about the same. He soldiers on day by day. You can tell he is tired, even when he is playing his best. He's quite pale and puffy and seems to be looking more "sick" than before. Maybe I'm the only one that sees it, but I guess a mother knows. Perhaps he's just starting to show how tired he is of this battle. Our 3rd attempt at starting his feeds back up ended in several bouts of throwing up throughout the night and morning. We let him rest for a few hours, but we're trying again. This time at 5ml/hr and only increasing by 2ml every 24 hours. We may try a new drug that will help Keegan's stomach empty because it seems that instead of backing up into his relief bag, he now is throwing up when his stomach stops processing. Wait and see.

Like Keegan, we are becoming tired in our journey, both in body and faith. We know without doubt that our Lord knows the secrets Keegan's body holds, and we have faith He will lead us in the right direction to provide comfort, peace, and a better quality of life for Keegan. Thank you for walking this journey with us. What more can we say. Thank you.

Maddie

p.s. The rest of the family is starting to feel better. Thank you for your prayers for us too.

p.p.s. Posted a little video of Keegan enjoying his ride-on during his TPN "down-time". So much fun not being connected to an IV pole!

Monday, January 19, 2009

Update

Keegan's hanging in there. We stopped his feeds in the middle of the night on Saturday because he continued to throw up. That stopped when we stopped his feeds. We'll try again today, and we'll only increase just 1 to 2ml every 12 hours. Not much else has changed. He continues to have the same amount of mucousy diarrhea both on and off the feeds. He will finish his antibiotics on Wednesday, and we'll draw another culture to be sure the infection is gone. This morning, his white counts and ANC had just come up into the normal range after an entire week on the upper limits of GCSF doses. We'll probably stop the GCSF tomorrow or Wednesday because transplant will object to his white count being too high. This afternoon, we'll draw the blood for the immunology tests, and we're anticipating needing blood tonight. His red counts are too low today to accomodate that amount of blood. The first round of immunology tests should be back by the end of the week, and they will tell us where to go from here.

In other fun news, the entire rest of our family is sick. Gray started feeling bad on Saturday, and by Sunday, he needed IV fluids at the urgent care doctor. He is still running a fever and has a stomach bug of some type. It seems he's passed it on to the rest of us too. Both my parents are sick, and I'm not feeling too hot. I've been able to keep the worst of it away luckily. It feels like we're back in the days just after transplant, spending the entire day in gloves and a mask. We think Keegan must have had a bug on top of everything else because his defenses were too low to not have picked up what we have. More than likely, it was something picked up here. In a kid with constant diarrhea and vomitting, it's hard to tell if there's a difference. You can't exactly ask him!

I actually have some specific prayer requests for you today. Thank you so much for caring about our family.

1. Please keep us all in your prayers, that this illness passes quickly and that it doesn't affect Keegan any more than it already has.

2. Please also pray that Keegan will tolerate his feeds this time. We need him to use his stomach if at all possible. We want him to be able to eat normally when we can get him through this.

3. Please pray, yet again, that this next round of testing provides an answer for Keegan. The immunologist today said that they don't have a particular dysfunction/disregulation in mind at this point, but they think the evidence is there that Keegan's immune system is not functioning properly. We know our Lord holds all these answers and Keegan close to His heart. Please pray for wisdom and guidance towards these answers for Keegan's doctors.

4. Lastly, another little girl is getting her miracle today. Please pray for 7-year-old Emily who went into the ER for her new heart at 7am this morning. She has been waiting since April for this miracle. Pray for improved health and a smooth recovery for little Emily and for strength for her family through this process.

We'll update again tomorrow. Thanks so much.

Maddie

This quote was in the Jesuit Prayer Network's recent email for Keegan, and I think it fits perfectly. Thanks, Karen.

"This is my hope, my one comfort, that in all my troubles I can turn to you, trust you, call upon you from the depths of my being, and in patience wait for you to comfort me." Thomas A Kempis

Saturday, January 17, 2009

UPdate

Keegan's had kind of a rough time of it since we started his feeds back up. We got him up to 15ml an hour, but when we pushed it to 20ml, he began throwing up. We backed down a bit, but he has continued to throw up. We're giving him a two-hour break, and then we'll start back over again at 5ml. This time, we'll go much slower, only 1 to 2 ml increases every 4 to 8 hours. Don't have the official plan from the doctor yet on that. Of course, his diarrhea has not benefitted from being back on the feeds, but we have to do what we can to keep his tummy "alive". His blood culture from Wednesday has remained negative, so we've stopped running daily cultures. Our 7-day antibiotic count-down began Wednesday with the first negative culture. Hopefully, the antibiotics have helped Keegan kick this infection. He doesn't have a lot of energy right now. As I'm writing, he's laying on his side in bed, pushing a car back and forth. We didn't run counts today, but I'm guessing his ANC hasn't come up much. We'll run another set on Monday, trying to preserve his levels until the big blood draw on Monday. No other news to report. Every doctor we've talked to lately has been pretty excited about the prospects of the autoimmune testing. We are certainly hopeful, too. It may not help us treat Keegan's symptoms, but as his hematologist said, having a name and a diagnosis keeps us from just trying different things in hopes they'll work. It makes our haystack much smaller, I suppose.

We hope you're having a wonderful weekend. We continue to be unable to express how much your prayers and concern mean to us. Thank you also for your prayers for our little friend, Avery. Her family is hopeful she will be able to go to the "h-word" by Monday. Thanks again.

Friday, January 16, 2009

Update

Keegan is being a very, very strong little boy. Yesterday, he had even more diarrhea than before on his fifth day of being on gut rest. We have not been able to get a good sample for the last remaining stool studies, but we are going to go ahead with putting him back on his feeds. He has been without anything in his tummy long enough for them to know and see what they need. Also, his neutropenia remains very severe and unresponsive to the GCSF. It went down again today to the lowest we've ever measured - 32. That is critically low, and hem/onc has increased his dose of GCSF a little more in hopes to see it start coming back tomorrow. Unfortunately, GCSF is the only known treatment for this type of neutropenia.

We did have a good meeting with the immunologist this morning. She seemed to have some good ideas and thought there was strong evidence of an autoimmune disorder or dysfunction. She has written for a lot of blood work to be done on Monday (send-outs generally aren't done on a Friday). Some of them will take quite a bit of time to come back. His hem/onc doctor told us this afternoon that Keegan will almost certainly need a transfusion Monday evening because the amount of blood they will need to take from him is so great. The epo has bought him 6 whole weeks without a transfusion, and for that, we are glad. If we need one more to get an answer, then that's fine. Keegan's blood culture from yesterday has not grown back positive yet. We're hoping it won't and that we can start kicking this infection.

We've had lots of visitors from the 8th floor, and after his nap, Child Life is going to take him back up there for play time and see his nurse girlfriends. Thank you so much for your prayers. Hope everyone's staying warm out there!

Thursday, January 15, 2009

Update

Again, no true news to report today, but a few changes. First of all, we are no longer on our beloved cardiac floor. It was a truly difficult decision to make to transfer Keegan to the GI service and therefore, the GI floor. The 8th floor (cardiac) is Keegan's second home (maybe even his first considering we've only been home for 50 days since August 23rd). That is both unfortunate in that no child should consider the hospital home and fortunate in that Keegan feels so comfortable with his nurses and doctors there. You could literally see his body relax when we got to the floor Sunday after being in the ER. Gray and I are also comfortable and at home there because we have become such good friends with almost everyone on the cardiac floor. We trust them implicitly, and they trust us without doubt. It makes all of our lives easier. Of course, it doesn't help at all that the GI floor is in the old Parkland part of the hospital that, apart from some computers and a TV, hasn't been updated since it was built in the 1960s. It is disgusting down here. Thank God the nurses are nice! Still, we decided to make the move because our primary GI doctor assured us that Keegan's problems could be resolved much easier here with their entire team surrounding Keegan. And as expected, Keegan's already making girlfriends down here too! We have been in close contact with his primary GI, although he is mainly at the Legacy campus now. The attending on the floor for the next two weeks is very motivated to help Keegan and is also keeping in close contact with Keegan's primary.

In other health news, Keegan's second port culture grew positive for an infection, but we're not sure yet if it's the same staph. We will continue to draw cultures daily until they are negative and will continue the antibiotics for seven days after the first negative culture. Keegan had a sedated echo this morning to check that none of this infection has gone to his heart, but we haven't heard anything yet. His neutropenia is not responding to the GCSF yet. In fact, it was worse today. Hem/onc has decided to increase his dose to see if we can't get him to respond faster. Still no fever, so that's a positive! His red counts are still hovering over the transfusion level thanks to the epogen therapy, despite the large amount of blood being drawn daily. All of his stool cultures have been negative for every virus and bacteria in the book. We are four days into "gut rest" (nothing by mouth/tube except meds and water), and Keegan continues to have the same amount of diarrhea as always. We still need to run some more stool tests to help limit the range of things that could be causing this diarrhea, so we'll hopefully get those done soon. Lastly, he has his monthly pentamadine (breathing) treamtent this afternoon.

So, I'm sure you're wondering what the doctors are thinking is causing all this. I wish I had an answer for you. We have some fresh eyes and brains on the case, and we're hoping for a good result. We are asking for an immunology consult because there is strong evidence that the inflammation in Keegan's system is an autoimmune disorder. We are also looking for an endocrinology consult to make sure he doesn't have a hormonal imbalance that's causing his system to work harder than necessary. If all else fails, we're discussing having the GI service refer/transfer him to another facility for a second opinion. There are still lots of diagnostic tests we can run and more stones to turn over before we reach that point. No one here is giving up on Keegan yet.

Keegan's spirits remain high. You would have been shocked to learn otherwise, right? As I write this, he has just woken up from a nap and is thrilled with the new toys Child Life brought for him to play with. He can't stop putting the shapes from one bucket into the next. Ahh, don't you wish you could be so simply amused? =)

Thank you for your prayers, love, and support. I can't imagine our life without each of you. You give us hope and strength when we feel we can't take any more of this. We look to our Lord, our family, and our friends when our burdens become too great. We have faith that He is with us and has sent His angels to watch over us. We can see that most clearly when Keegan smiles despite the pain, discomfort, and tediousness of hospital life. This may not be the life we had envisioned for our family and our son, but we know it is one carefully planned and accounted for by Him. We embrace it despite our heartache and frustrations. Thank you for helping bolster our faith and spirits with your prayers and love.

Maddie

p.s. Please, please keep our dear friend, little Miss Avery in your prayers. She was admitted at Legacy for a fever last night. Like Keegan, even the smallest infection can be life-threatening for her. Your prayers for her health and comfort are needed and appreciated for her. Thanks.

Tuesday, January 13, 2009

Update

Unfortunately, I don't have a lot of news to report at this time. Keegan has not had what we'll call a "pain episode", for lack of a better term, since last night. He seems in much better spirits today, albeit still rather tired and puffy. His fever seems to be gone for now. He is back on GCSF, but his marrow hasn't responded yet. His neutropenia is more severe today than before, although it should begin to get better with continued GCSF treatment. Keegan's red counts are again staying stable just above transplant's threshold for blood. And lastly in the "good news" department, GI approved putting him back on his old immunosuppressant! Our Bug will hopefully start looking like himself again soon.

Onto the rest of the news...Keegan's first blood culture grew back for another staph infection in his port. We don't know what type yet, and we drew another culture yesterday to try to determine if the first one was contaminated. He's being treated with antibiotics anyway. We spent most of the morning having a test in radiology called an "upper GI with small bowel follow-through", basically a series of xrays to see how dye travels through the small intestine. We were looking for scar tissue from the different tubes and surgeries when he was an infant, but everything looked fairly normal. They have drawn lots of blood and are trying to get lots of stool samples. For now, we are treating his liver problems and diarrhea as two separate issues. More liver labs were sent out today, and the doctors have him on "gut rest" (basically nothing in his tummy but meds and water). He has not had any feeds since 3pm on Sunday, and he continues to have about 10 bouts of diarrhea each day. Beginning tonight, he will go back on 20 hours of TPN a day to compensate for not having formula going in his ng tube. We has tested negative three times now for the c-diff infection, so at least we are off contact precautions for now.

All that being said, we will likely be transferred onto the GI service in the next few days, since those are his main issues. Again, we will continue to keep you updated as we know more. This is looking like it will be at least a couple of weeks of inpatient treatment at this point. We can never, ever express how much your support and prayers mean to us. A friend of ours today said that we know our Lord has all the answers for Keegan, and we pray He will continue to lead Keegan's team of doctors and medical staff in the right direction to give him healing and peace. More soon.

Monday, January 12, 2009

Back at Children's

Keegan was admitted at Children's downtown again last night. He spiked a very high fever around 3pm, and the transplant team sent us to the downtown ER to be admitted by hem/onc. We spent way too long in the ER but finally got to the floor late last night. Keegan continues to have a high fever this morning. He's riding the tylenol wave of spiking back up about an hour before he can have the next dose. He cannot have ibuprofen due to interactions with his immunosuppressants, so we simply have to help him be comfortable in between spikes. He's been off his tube feeds since 4pm yesterday and continues to have diarrhea and a distended stomach. His labs in the ER were worse for his liver function, but his neutropenia was not too severe (246, not 70 like before; remember normal is over 1500). We haven't seen the hem/onc attending to discuss anything other than tylenol and his usual IV antibiotics yet today. We don't know if they'll put him back on GCSF or not.

We spoke with Keegan's new GI doctor this morning. He called us to go over some of his thoughts and what additional tests needed to be run, and he was quite surprised to hear Keegan had been admitted with a high fever. We had been anticipating a scheduled admittance sometime this week for gut rest anyway, but the fever threw us into it earlier. Keegan was in quite a bit of pain yesterday, and he is generally uncomfortable and fatigued from the fever. His liver issues and diarrhea desperately need to be addressed. Needless to say, we're hoping this time's the charm, so to speak. We'll update again soon with whatever information we have. We appreciate you continuing to lift Keegan up in prayer. Please pray for comfort for Keegan and clarity and wisdom for his doctors. Thank you so very much.

Friday, January 9, 2009

Update

We didn't want our friends and family to worry for lack of posting. We had a very encouraging visit with GI yesterday. We truly feel this new doctor is looking at Keegan's case with fresh eyes. He has some good ideas, but it also requires him to take the time to thoroughly read and become familiar with all of Keegan's prior testing/labs/history. He will be in contact with us again hopefully over the weekend but at least by Monday with a plan of action for Keegan. We will be sure to let you know when we know something.

Keegan continues to struggle with terrible diarrhea, bleeding, and stomach cramping. Luckily, his TPN gives him enough energy to play and be happy when he is awake. Napping and sleeping are rough; the cramping and pain from his diaper area irritation is quite uncomfortable. He continues to smile through it all, and we are so grateful. Thank you to everyone who has visited and helped us out lately. We could not be more appreciative. Thank you so much for your unfailing prayers and support. It gets us through the day. We'll update as soon as we have the new plan. Have a great weekend.

Wednesday, January 7, 2009

Update

I just wanted to post a quick update to ask for your prayers for Keegan. He is struggling with his stools, and his diaper area is terribly irritated because of it. His liver function was very concerning in today's labs, and his GI doctor has asked to have Keegan come into clinic at 7am tomorrow morning. We were not scheduled to have Keegan's first meeting with him until next week. Please pray for wisdom for Keegan's doctors and comfort for Keegan. We'll update more when we know. Thank you so much.

Sunday, January 4, 2009

Update

I'm so sorry for the lack in posts. To say we have been crazy busy just trying to get our feet on the ground here would be the understatement of the week! We've had so much help from friends and family watching Keegan here so we can concentrate on a working order. You know who you are, and we appreciate you more than you'll ever know. As for Keegan, he is slowly becoming more comfortable at home. The car seat is still not his favorite, but he has woken from a few naps and one morning without screaming in fear of not knowing where he is. We've had quite a few mishaps with lines, falling IV poles, pulling ng tubes out, and continued diarrhea. Keegan has even gotten used to knowing when his lines are too tight, and he will stop and whine until you untangle him. His labs weren't great on Wednesday. He's moderately neutropenic again, and his liver and kidneys didn't look too hot. The epogen is helping keep his red counts just in the ok range, and his vitamin/electrolyte levels were wonderful. He was such a champ at hem/onc clinic Wednesday with his port reaccess and labs. He just barely hit 19 pounds on their scale, but then, he proceeded to have 7 dirty diapers throughout the day. Should be interesting to see what he weighs next week. Also, we finally were able to bring all 120 books that were donated for Keegan's birthday to the Children's Legacy campus on Wednesday. The librarian was just ecstatic. I have a picture of that to post, and a few other fun pics and a video. I'll try to get that up soon. That's about all the time I have for now - sounds like Keegan needs a cat-nap badly at the moment. Thank you as always for your prayers and encouragement. We couldn't get through these days without them. Happy New Year!