Wednesday, November 26, 2008

Update

Keegan started his enzymes last night. It will take 4 to 7 days for them to begin to work. We've taken him off the antispasmodic to see exactly how he does with the enzymes. The biopsies from his recent scopes were normal, including the irritations in his colon. They are likely just from his GI inflammation and should heal well. We've already seen less blood in his diapers. The doctors are unsure why Keegan's pancreas isn't working correctly, but if he responds to the enzymes, then we won't do any more testing to find out why. GI also thinks the immunosuppressant Keegan was taking, Prograf, was irritating his system in a completely different way, so we'll leave him on the new one, neoral, for now. We still don't have an update from hem/onc, but their tests won't be back until next week probably.

We're gearing up for a quiet holiday weekend. We'll draw labs to check Keegan's blood levels tomorrow, and then we'll probably leave him be until Monday. We are so thankful for each of you and for your love and support. Have a great Thanksgiving. We'll update again tomorrow.

Monday, November 24, 2008

Update

Keegan had a pretty good weekend. The blood he got on Friday really helped give him some more energy. It also brought his heartrate and blood pressure down some. The antispasmodic drug that GI started him on reduced the frequency of his stools into the normal range, but they are still loose. That won't change until we can get him to absorb more of his food. The TPN has kept him gaining little bits of weight though, so he's up to 16.5 lbs now.

Saturday, he accidently disconnected one of the fittings on his central line, and he lost some of the nice new blood he got on Friday. It looked like a crime scene in a movie on his bed, but all in all, we don't think he actually lost as much as it appeared he had. I guess looks can be deceiving when it comes to blood. I had to throw out his white socks because they were completely soaked. If there was a positive from having to reaccess his port, it was that he had his first bath in 6 weeks! He really enjoyed it. Bathtime used to be one of his favorite times of the day - still is I guess. Sunday, he tugged on another fitting, so we've now started taping them all together to avoid any more disasters.

The pancreatic enzyme levels are back, but GI is having a team conference tomorrow with all of the GI attending doctors and fellows to discuss how best to treat Keegan. I've only heard that some of the levels were low, some were not, and some were indicative that the enzymes he's creating aren't working the way they should. I don't know what any of it means yet, but we'll be sure to update when we do know. Really, all we know now is that they are discussing them and will let us know tomorrow what they plan to do about it. If he begins to process and absorb more of the nutrients from his food, then we will be able to leave his TPN on for less time each day, reducing the risk of him playing with the line again. The great thing about the levels at least being back is that we can work on starting treatment with Keegan this week and maybe go home next week. We were so worried the labs would get caught up in the holiday and not be back until next week, giving us yet another week in the hospital figuring out what to do about them. Hem/onc was still processing their labs, and Dr. Rodgers said they can't tell us much more until they have their "complete picture." Right now they are concentrating on his red blood cell production and trying to find out how to increase the length of time between transfusions.

THANK YOU so much for your prayers!! Tomorrow will be six weeks since Keegan was admitted, and we are finally on the right track. It is so encouraging to see him in a good mood and with great energy. Today, he was such a fireball that I mentioned something about him being hyperactive to Dr. Fixler. He looked at me and said, "that's how normal babies are supposed to act." We've given him blood and good nutrition with his TPN, and boy howdy, is he a handful! That's what we get for naming him "little fiery one"!! I'm almost scared to see how active he'll be when he's actually eating and digesting his food!! We are hanging in there and getting ready for the next step thanks to your support. We just can't thank you enough. Please continue to keep Keegan in your prayers as we find the best course of treatment for him.

Friday, November 21, 2008

Update

Just a quick note with what we've learned since yesterday's procedures. Keegan's hematologist/oncologist, Dr. Rodgers, said there is no evidence of post-transplant lymphoma in his bone marrow, which is great. We will still wait for his scope biopsies before completely ruling it out, but we're pretty confident since the marrow is clear. They have sent a lot of marrow out for testing, which will take until next week or the week after. The other thing they could see was that Keegan has developed antibodies to his own white blood cells, which is why he has no mature white blood cells. We don't know why yet, and Dr. Rodgers said we probably won't treat it unless he starts getting infections from being immune deficient. GI has decided to wait on starting enzyme replacement therapy until the official labs get back, but it looks like that's where we're heading. I found out today that the pancreatic stimulation test was supposed to take about 1 hour, but Keegan stopped producing bile at the 20 minute mark, thus stopping the test. Again, we won't have any more information until labs come back.

Keegan's blood counts were even lower today, so the transplant team decided to give him a little over two units of blood today. He just finished that, and it seemed to perk him up again. It's bedtime now and Dad's night, so we'll let you know more as we know it. We're hoping for a quiet weekend. No one is expecting Keegan to go home before Thanksgiving. We told them we were fine with that if they get us home before Christmas! Thanks so much for continuing to keep Keegan in your prayers. Have a great weekend.

Thursday, November 20, 2008

Update

Keegan did well throughout his procedures today, and we may have a glimmer of hope for an answer finally! First, they repeated his upper endoscopy. They noted some flattening of the villa in the stomach that help digest the food, which can be helped as he starts tolerating a greater volume of food. During the endoscopy, they did a pancreatic stimulation test. When we eat, the brain releases a hormone called CCK to stimulate bile production in the pancreas. In the stimulation test, they give a dose of CCK that should keep the pancreas producing bile for about 30 minutes; then they take samples of the bile after 10 minutes and 20 minutes for testing enzymatic levels. At 10 minutes, Keegan only produced a small amount of bile. At 20 minutes, there was no bile at all. The doctor said they can't say anything definitively until the lab comes back with numbers on his levels, but he was fairly confident Keegan's pancreas is not working sufficiently. This would explain a lot of his GI issues. Next, we have to find out why his pancreas doesn't work, but he could still start enzyme replacement therapy in the meantime. Then, they did the colonoscopy and found several lesions in his rectal cavity which are probably the source of Keegan's bleeding. These were biopsied and cultured to see if they are just irritations or something else. Lastly, they did the bone marrow aspiration. They were not able to take enough bone marrow to run all the tests, but they got enough to run the more important ones. They were afraid to take too much with his counts being rather low. They were not able to get an sample of the actual bone because he was too small. We should have a preliminary read on the bone marrow tomorrow. Keegan's in a good mood, but his stomach is cramping terribly right now. He's been doing on his hands and knees for almost two hours now. The nurse said you can here his stomach cramping when you listen to it with a stethoscope. They are going to start Keegan on an antispasmodic drug that will help keep him from cramping up too much. The transplant team is watching Keegan's heart carefully. His heart rate has been elevated for awhile, and his blood pressure has remained high or in the upper range of normal. His transplant doctor said they will not do anything unless it stays high without coming back to normal every now and then. We Thank you very much for your prayers throughout this time. We are so thankful for even the small possibility of an answer today. We've said it time and again, but we know that God has sent his strongest angels to watch over Keegan and help him get through these times. We still have quite a way to go to get Keegan well again, but we are hopeful that he will come through this even stronger than before. Thank you again for your love, support, and prayers. We can never thank you enough.

Tuesday, November 18, 2008

Update

We had a care conference this morning with Keegan's transplant team, GI doctors, and hematologists. We have scheduled him for another upper endoscopy/colonoscopy on Thursday at 7:30am. Keegan has had blood in every dirty diaper since Friday, and GI believes it's coming from his lower colon. They will look into the cause of the blood, take more biopsies in case there were any sampling errors from his last ones, and also do a more reliable test for pancreatic insufficiency. While he is sedated, hematology will do the bone marrow biopsy and aspiration. Together, the two procedures with anesthesia will take about two to three hours. Additionally, we are scheduling a CT scan of Keegan's entire torso and neck. I won't get into what we are looking for at this point, but we are very comforted that Keegan's team of doctors is far from giving up on him. There have been times we've felt like things haven't been moving as quickly as we'd like. We felt after today's conference that everyone is just as frustrated as we are. Once again, Keegan has thrown the book out and challenged his doctors to figure out what's wrong. Still, he continues to be in a good mood most of the time, which is definitely encouraging. They put him back on contact precautions for about 12 hours to test once again for c-diff. He hates contact because of the gowns and gloves the nurses and doctors must wear. That test came back negative once again, so we are thankfully off contact again. We have increased the calories in his TPN to be 4x that of what a normal baby his age is getting. He weighed in at just over 16 pounds today, so that is working. He continues to have lowering blood counts, about 14 stools each day, and blood in his stool.


PLEASE pray that the remaining tests we have scheduled for this week provide an answer for Keegan. His doctors are all now firmly on the same page, and we definitely feel the communication has gotten better. Now, we just need to know how we can help our Bug get back to normal. Thank you so very much for your prayers thus far. We appreciate all your thoughts, prayers, support, and we know we couldn't have made it this far without it. Thank you so much.

Sunday, November 16, 2008

Update

We've had a mostly quiet weekend for Keegan, again in the "two steps forward, one step back" fashion of recent weeks. He is still having on average 14 dirty diapers a day, and most of them have had blood in them for the last 48 hours. He has had several large clots, but mostly smaller streaks. We ran one test of his blood counts yesterday. He had dropped again. We'll get a more complete set of labs tomorrow, but I would anticipate he'll need another blood transfusion in the next few days if the trend continues. No fevers still. He lost weight for two days, but he was up a bit today. Still, he remains in good spirits and has been entertaining the nurses daily. He had a blast with Aunt Alex today while Gray and I met with Keegan's transplant surgeon, Dr. Guleserian, this afternoon. We are scheduling another care conference with Keegan's transplant team, GI doctors, and hem/onc doctor for the beginning of the week. The transplant team and GI would like to go ahead with the bone marrow biopsy early this week. GI is also requesting a CT scan of Keegan's entire torso, not just his abdomen. We'll keep you updated on news as we get it. We hope you all had a good weekend, and we appreciate you keeping up with Keegan. Thanks so much.

Friday, November 14, 2008

Update

Keegan has had quite a few ups and downs the last few days. His fever has broken; he's gained a touch of weight, and he has had a good attitude most of the time. The cystic fibrosis bloodwork came back negative, and his blood counts aren't dropping as dramatically as we first thought. He's been hanging out right above the transfusion levels since Tuesday. We know he's not sufficiently making red blood cells right now, so we're watching his counts carefully. However, he's still having multiple, mucousy stools a day (15 yesterday, 17 the day before). Of course, that makes his bottom hurt, and he gets very crampy when they are the most frequent. GI has made a few changes to his orders. The transplant team had been wanting to increase his feeds by 5ml each day; his stomach reacted violently to that, so he's back down to 15ml/hour and won't start increasing again for a few days, then at only 1 or 2ml each day. That being said, Keegan is only made the small amount of weight gain he has due to the TPN going directly into his blood through his port. TPN is pure nutrition, and all your organs have to work harder to process it than if all your nutrition is from food. Usually, kids can go several weeks to months without too much trouble, but Keegan's liver is already showing some problems. We will have to start cycling his TPN off for several hours a day to give his system a break. Obviously, that doesn't help in the weight gain area, and it makes getting him to take more formula a day more urgent. We've also added some fiber to his formula in hopes of helping his system absorp more calories. They stopped the preventative antibiotics they started during his latest fever, and GI started him back on flagyl, which was what he took to kick the c-diff infection. They said it can help even out the bacteria in his GI system. I don't remember if we posted that, but the biopsies and stool studies showed Keegan has very little "good bacteria" left in his stomach to help digest his food.

Yesterday was dressing change day for his port, which means taking the dressing off, taking the needle out, and reaccessing his port. Fun, right? Remember that the week before, he ended up with the needle out of place and TPN pouring into his skin. So, yesterday it looked like everything went ok with the reaccessing, but Keegan was very agitated afterward, pulling at the skin and plastic protector over the port. He usually doesn't do that, but his skin was pulled pretty taught under the new dressing. His stomach was hurting him quite a bit, so we just thought he was overall not feeling well. This morning, however, the dressing and his pjs were wet with TPN (you can tell because it's yellowish and smells a bit like vinegar). That meant we had to take it all apart and put Humpty back together again. This time we called the access team in to help, and this one looks pretty good. Through all that, he was still having stomach cramps and several dirty diapers. Now, what would a stressful morning of crying, straining, and poking be without your ng tube flying right out of your nose? Add insult to injury, right? So, I was able to really get him cleaned up, a new tube in, and cover him in pink baby lotiony goodness and some new pjs before he crashed for a much needed nap. What a way to start the day...and Friday to boot.

So, you're probably wondering where we go from here. The last genetic test is still pending, could be as late as Tuesday before it comes in. Hem/onc (hematology/oncology) initially wanted to wait until that came back to schedule Keegan for a bone marrow biopsy, but GI and the transplant team asked this morning if we couldn't at least get him on the schedule for next week now, so as to not waste time next week fitting him in. I haven't seen Dr. Scott, Keegan's hem/onc doctor, since the beginning of the week, so I don't know what the decision is on that yet. GI is going to reevaluate his biopsied tissue and bloodwork for some other transplant-related problems, and they may request another scope to take tissue from different areas in case they happened to miss something. Unless his fever comes back over the weekend (it seems to be about once a week, but you never know), they will likely not draw labs again until Monday. If we get more information, we'll surely post to let y'all know.

We are so appreciative of your prayers and thoughts for Keegan. He is just the strongest kid I have ever known. It hurts me so much to see the struggles he faces daily with a smile. I know that most any adult would be beaten down by this point - but not Keegan. I pray that he never loses that faith and good attitude because I know that this is just the beginning of many more hospital stays, illnesses, and challenges for him. We also appreciate your prayers for me and Gray. We feel so lost some days, and I think the word frustrated doesn't even come close to describing how we feel. We have grown pretty tired of fighting a beast we can't see and can't name. Dr. Fixler said yesterday that we "don't want" this illness to be the bone marrow failure disorder that we've sent the last bit of genetic testing off for. Well, we didn't want Keegan to have a heart transplant or be immune-suppressed either, but we learned to accept it. Just knowing what Keegan's fighting (good, bad, or in between) will be a relief. We can learn to adapt; we can learn to cope. We can fight and manage and treat what we know. It's the unknown that is such a giant risk to Keegan's heart and system, and I know that none of us will give in until we figure this out. We ask for your prayers for Keegan, our family, and every doctor and specialist in this search - that we all maintain the strength, patience and fervor needed to search and fight until an answer is found. Thank you so much, and we'll keep updating as much as we can. Don't forget to keep checking his pictures and videos because we're not always sure when we'll get more posted on that site. Thanks!

Tuesday, November 11, 2008

Update

Good news first - Keegan had fewer number of dirty diapers and a bit of weight gain between the last two days. The dirty diapers aren't any less scary unfortunately, but we are happy for any bit of good news. The bad news is that Keegan has been running over a 100 degree temp since last night, and it's been as high as 101.8. So, more blood cultures from his port and a vein in his foot. As you probably remember, that buys you at least a 48 hour visit. No other news to report. Keegan has his moments, but for the most part, he is still playing and showing some good energy. We increased his feeds to 15ml/hour late this afternoon, and tonight we'll be increasing the calories in his TPN to try to help the weight gain issue. I really hope the remaining genetic testing we've sent out doesn't take a full two weeks, but we'll just have to wait and see. Thank you for continuing to pray for Keegan and also for me and Gray. We are getting extremely anxious and feeling completely helpless in understanding what's going on with our Bug. We greatly appreciate your support. More tomorrow.

Monday, November 10, 2008

Update

Well, what did I say about not saying the "h" word until we were actually on our way there? Keegan lost a bit of weight over the weekend. Not enough to be terribly concerned, but it's not positive weight gain either. The doctors would like to see several days of less than 30cc of stool per kilo of body weight a day, and Keegan hasn't had one yet. His blood counts had continued to go down over the weekend, so we're not going to pull any more until Wednesday. GI wants to leave him at the current 10ml/hour of Neocate for another day or so and see if the probiotics start to help his tummy even back out. That's about it for now. Keegan continues to be in a good mood most of the time he's awake, and he still loves to flirt as much as possible. We'll see how he does this week, and we're hoping to be home for Thanksgiving. The genetic bloodwork for the bone marrow disorders is still pending. It could take up to two weeks, and we just sent it out last Tuesday. Thank you as always for your support and encouragement. It keeps us going every day. We never want Keegan to stay in the hospital one minute more than he needs to, but we know that he is in good hands and being lifted up in prayer every day. Thank you so much.

Saturday, November 8, 2008

Update

This weekend is an official "Leave Keegan Alone" weekend. No poking, no labs, just see how he does over the weekend. Mainly, we'd like to see him gain some more weight, lessen his diarrhea, and at least have stable blood counts on Monday. I think if his tummy doesn't do worse and if he has no major fever spikes, then we can start the going home process on Monday. His counts were starting to go down again on Thursday, less than a week after getting two units of blood. If Monday they haven't gone down any more with no blood being drawn since Thursday night, then home is a better option than staying in a germy hospital. It wouldn't surprise me though if he needs blood before we leave. That requires at least 24 hours of observation afterwards. It will take a few days to get everything in order to go home though. We have to secure the TPN delivered to our house everyday. We'll need a home healthcare nurse to come to the house daily since we'll be using his port for TPN and lipids, which of course requires a battle with our insurance company. We'll have to get new prescriptions filled. You get the idea. I hesitate to even write the word "home" here because I've probably just doomed us for actually getting there. Oh well. We're still waiting on the genetic bloodwork we've sent out to come back before we schedule more testing.

Keegan had another celebrity moment this morning. Blake Shelton and Miranda Lambert (country singers) were at the hospital today because they're supposed to perform at the Texas Stampede tonight at the American Airlines Center. Child Life came and asked if Keegan would like to meet them, and of course, we said yes! They were both very sweet, even if a little intimated by the amount of lines coming out of him. Keegan was the only one in the playroom with an IV pole, and he has a double pole with 3 different lines, plus he had to wear his mask. Blake Shelton had just finished saying how kids always clam up around him when Keegan put both arms out and lunged at him to be held. It was pretty funny. We took some pictures, but we're still having trouble posting at the hospital. Gray will try to put them up tonight. Just keep checking.

Please pray that Keegan has a good enough weekend to go home next week. Gray and I were hoping to not go home until we had answers and were sure we wouldn't be right back here again in a week. However, we don't want to wait another week here for bloodwork if he's ok at home with a nurse at the house. Thank you as always for your love, support, and prayers. We truly wouldn't be able to get through this without it.

Thursday, November 6, 2008

Update

Keegan is still in good spirits. He even went to the playroom with Mamie this morning while I was at work to make paper turkeys and play with the clowns. He continues to have a low-grade fever, diarrhea, stomach cramping, and plenty of funky stuff going on with his blood (very medically accurate, I know). We’ve sent even more bloodwork out for testing, and we’ve asked for a consult from Infectious Disease. It sounds like there might be two things at work here – some type of bone marrow issue and an unknown infection of some sort. Keegan is still being followed by the transplant team, GI, hem/onc, and now ID until this is figured out. His blood counts are already starting to go down, less than 7 days after getting two units of blood. Of course, it’s not helping his anemia that we’re drawing so much blood for testing. Tomorrow, we don’t have much planned as far as I know. Just waiting for test results, watching Keegan’s GI system, blood pressure, fever, etc.

We had to sink his ng tube again today and reaccess his port (has to be done every 7 days). That just means we took the needle out of the port, clean it up, and put a new one and new dressing in. He did really well during the process, but another problem cropped up in true Keegan style. Luckily, I left him in just a diaper after the port change for about 30 minutes until I tried to put a new ng tube in. While Gray and I were eating our dinner during that break, Keegan’s chest under the port began to swell up with fluid. It would have been really bad if we had not caught it when we did. I rarely leave him in just a diaper, so God was definitely watching over Keegan tonight. Basically, the nurse that tried to reaccess it missed the port, so the TPN was just pumping into his skin and the area underneath it. If you looked at him from the side, you couldn’t see his neck due to the swelling. We called the charge nurse from the oncology floor to come take a look. She pulled the needle out, and fluid just oozed out. They pushed as much out as possible, numbed the area with lidocaine, and let him rest and drain for about 10 minutes. The oncology nurse and the charge nurse from our floor are amazing. They could feel the port underneath and with a little bit of maneuvering were able to get it going again. We had to at least get a needle in there to lock it with heparin. The swelling has come down a bit, but now we have to watch him closely overnight for what’s called “calcium burn”. The skin doesn’t like contact with calcium (one mineral in his TPN), and it can cause necrosis of the skin if left untreated. There is no danger of the fluid moving to his lungs or heart. It will all be absorbed eventually by his skin.

Keegan is the strongest, most awe-inspiring individual I have ever known. I know I’m a bit biased, but I know that any of us would have crumbled in broken spirits after all he has been through lately. He cries just like any baby would, and then he moves on as if it never happened. Accessing his port tonight while he was swollen was so much worse than an IV attempt, but he still gave the nurses hi-fives and bye-bye waves when they were done. I wonder how much one little body can take. Still, he proves me wrong every day with his endless smiles. I know he is nowhere near teaching us all he can about strength, grace, love, hope, and God’s mercy. I thank Him every day for the honor of calling Keegan my son. Thank you as always for your prayers. We promise to keep you as updated as possible as we learn more.

Tuesday, November 4, 2008

Update

Today was more of elimination of possibilities again than answers. Keegan was again in a pretty good mood today with lots of smiles and monkey faces. His white blood cell count was up a bit, and he is up to 15 pounds again. He had an echo today to check his heart function, and it is still good. He had a sweat test this morning to rule out cystic fibrosis. I tested negative as a carrier in my first trimester, but those screens can be misleading sometimes. The biopsy of his throat turned out to be just an ulcer, so now we have to figure out how to get it to heal.

His biopsies from the scopes came back as fairly normal, so we are now operating under the assumption that we are dealing with a blood or bone marrow disorder. We met with the hematologist/oncologist, Dr. Scott, today. He is a very intuitive and thorough man. He has ordered some genetic testing, bloodwork, and of course, more stool studies, to lead us through this maze. He has some good ideas, and we’ll let you know what we find out. The bloodwork will take a few days, and even if it comes back with an answer, we will have to start treatment and gain some weight back to go home. It’s looking like at least another week or two here.

In more interesting news, Keegan finally took some steps behind a walker completely on his own! We were in the playroom and couldn’t get Keegan to crawl or stand much, despite cruising all over his crib. One of the child life specialists grabbed a walker like the one he got for his birthday, and I’ll be darned if he didn’t take off like lightning! Well, maybe not so much lightning, but he took about 8 or 10 steps before he sat down. Keep checking his picture/video website, and we’ll try to get a video posted of the walking soon (hard to do with the laptop at the hospital).

I know I’m sounding like a broken record here, but we truly are appreciative of your prayers and thoughts as we’ve battled the unknown in the last three weeks. Of course, we are so grateful for the meals, visits, gifts for Keegan, and more, but your prayers lift our spirits when the doubts and frustration become overwhelming. I thought I’d share with you the first reading from Wisdom 3:6-9 from Mass last Sunday (it seems my mom and I have become the official readers at the hospital Mass lately!). It again talks about faith during trials and was exactly what I needed to hear. Maybe it will be what you need to hear today. Thanks again.



In the time of their visitation they shall shine, and shall dart about as sparks through stubble. They shall judge nations and rule over peoples, and the LORD shall be their King forever. Those who trust in Him shall understand truth, and the faithful shall abide with Him in love: Because grace and mercy are with His holy ones, and His care is with the elect. (Wisdom 3:6-9)

Monday, November 3, 2008

Update

Yesterday was a day of rest and no poking for Keegan. The blood and TPN helped restore his energy, and he was in a very good mood yesterday and today. Late last night, we started giving him an extremely elemental nutritional mix called Tolerex through his tube at only 5ml/hour. It is completely fat-free but has carbs and protein for calories. We're still giving him max-calorie TPN and lipids to add to his caloric intake. Stil, he continues to have diarrhea, and he now weighs less than 15 pounds.

The biopsies are still not back yet, hopefully tomorrow. We met with Dr. Semrin from Children's GI. He spent almost an hour going over Keegan's history. Of course, he said we have to wait for the biopsy results. He's also going to get the slides from Keegan's scope that was done at Medical City to see if there's any changes. He ordered some more blood and stool tests (yeah), and he's asked for a hematology consult to come in. Keegan's low white blood cell count, anemia, and high inflammatory counts could indicate something going on with his bone marrow.

We'll let you know what we find out, when we find it out. Please continue to keep Keegan in your prayers. We appreciate it so much more than you know. Thanks.

Saturday, November 1, 2008

Update

Well, just as we feared, the scopes came back as pretty normal. Biopsies and cultures were sent once again, and they will take until probably Monday or Tuesday for results. We haven't had a visit from GI to follow-up. Dr. Barth will probably come by tomorrow, but really we'll have to wait for the biopsy results to come back before we proceed on to the next step. Thank you for checking in on Keegan. He's doing ok today. Just tired from anesthesia and not feeling well. We'll let you know tomorrow what we find out. Have a great weekend, and thanks for your prayers.

Update

Sorry for not posting yesterday. Halloween was a busy day around here. Keegan's blood counts were extremely low again yesterday, and he was very lethargic. He was asleep most of the day, even most of the time we were at the Halloween carnival. We were finally able to get him two units of blood and put him back on TPN yesterday evening. That really helped perk him up today.

We had our care conference yesterday morning, and Gray and I feel like it went very well. Don't know how everyone else felt. Ultimately, we just wanted everyone on the same page about what kind of communication we expect from their end and what type of participation they should expect from us. I think it helped the transplant team to sit down with representatives from radiology, MRI, and diagnostics also. They were able to learn how to better communicate with each other when things aren't going as planned.

Children's GI finally came to meet with us and evaluate Keegan yesterday afternoon. They scheduled him for an immediate colonoscopy, which he is actually in right now as I'm typing. There are so many things that could be going on with his system, and the colonoscopy and a repeat of the upper endoscopy are just the beginning of this continuous elimination process. We'll post again this afternoon with results, and we are fervently praying that we are able to end the day with at least a bit more information than "everything looked fine."

Keegan was the cutest Itsy Bitsy Spider ever yesterday. He was able to go to the carnival for a bit. Then, we went to visit his friends in clinic and the CVICU. Last night, we put his costume on one last time and did some "reverse trick-or-treating." Mamie and Big Daddy brought some candy up, and we walked the floor handing out candy to nurses, doctors, staff, and any other kids whose parents said it was ok. Mamie and BD also brought the Huffman family tradition of chili and ghost cake up to the hospital, so that we didn't have to miss out on that either. We're trying to post new pictures of yesterday's events. If they're not up right away, we'll get them up soon, so keep checking.

Please pray that this colonoscopy and upper endoscopy are able to provide an answer for Keegan that he so desperately needs now. We'll update again soon. Thank you!