Home...Again

We just made it home a little while ago. Keegan had just enough energy to play while I set up his home pumps and then crashed for another nap. He still has not gotten used to his car seat or crib again, but he's getting better. The transplant team prescribed another round of lasix for Keegan before he was discharged because he is still quite swollen, and he may need another dose or two to get back to normal. Keegan will have more labs and be reaccessed in the hem/onc clinic at Legacy on Wednesday. We are still absolutely up to our ears in medical equipment and Christmas presents, and anyone who knows me understands that chaos and I are not friends. LOTS of work to do to get back to functioning well around here. We promise to try to get new pictures up soon, and we'll be sure to update after Wednesday's labs. Have a wonderful week.

Update

Keegan slept pretty well overnight. His fever is still gone, but he continues to throw up and have bad diapers. The diapers are the most frustrating for us because they look exactly like they did before we started getting results with the enzymes and questran. It's too soon to tell, but we're hoping it's just a side-effect of the virus and antibiotics. His white counts were up a bit this morning, and he is just barely in the normal neutrophil range. That's great because it only took 2 doses of GCSF this time, instead of 5. Hem/onc came in just awhile ago and said that they're comfortable sending him home without GCSF for now. He'll have more labs on Wednesday, so he'll be watched closely. We're packing up and getting ready, but we probably won't be home until late this afternoon. In addition to normal discharge matters, the doctors have to rewrite his TPN orders and get that to the home healthcare company.

Thank you so much for your prayers throughout this time. We're praying for a better run at home this time! We'll update from home next time hopefully!

Update

Keegan had an ok day yesterday. He spent most of the day asleep, catching up from the last few nights. He hadn't thrown up since the night before in the ER, but he was having some pretty bad diarrhea again. When he woke up from his nap, his face was quite swollen, and I told the resident that I thought he might need some lasix to get rid of the excess fluid. He told Gray and I to watch him for now, and let them know if it got any worse. It didn't really change much, but we didn't say anything else considering it hadn't gotten worse. Keegan perked up for the first time when his Aunt Alex came to visit and had a nice evening playing with family. Gray said he slept ok last night, but by 5am, his admitting hem/onc doctor had decided to go ahead with the lasix to help his kidneys process a little better. Gray said it worked well this morning, but we think he'll need another dose or two to get back to normal.

This morning was not so hot. Gray gave Keegan his medications down his ng tube and was clearing his nose with the suction a bit when Keegan started vomitting again. He was still trying to clean everything up when I came in with the coffee. Keegan had been so sick to his stomach that he coughed up his ng tube again. On the plus side, his fever hasn't come back, and his diapers look a little better. His hem/onc doctor said this morning that if the blood cultures come back negative by the 48 hour mark later tonight, he'll send Keegan home Monday with the GCSF injections even though he's still severely neutropenic. This time of year, the risks of being in the hospital tend to outweigh the benefits - hence the stomach virus Keegan likely picked up here before we left. He'll have his weekly labs on Wednesday, so he'll be watched closely enough.

We're so humbled by your prayers and outpouring of support for our entire family. We would be lost without your love and the grace and mercy of our Lord that carries us every single moment of the day. Thank you, and we'll update again tomorrow.

Back at Children's

So, here we are back at Children's. We had been meaning to update again, but we've been pretty busy with Christmas and trying to get organized at home. Keegan has been throwing up at least twice a day since we came home, and his dirty diapers had gotten worse. We would tell the transplant coordinator every time she called, but we kept attributing it to the stress of adjusting to home. Additionally, the home healthcare company sent the Neocate Junior instead of the Neocate Infant formula he was on at the hospital. The only difference is a higher concentration of vitamins and minerals, but we thought it may have been enough to cause a little stomach upset. We weren't afraid Keegan would get dehydrated because of his TPN/lipids. On Christmas Eve at Maddie's parents' house, Keegan threw up right as we were getting ready to leave, and on Christmas Day at Gray's parents' house, he had an accident while opening up presents that wiped out his and mom's clothes. We were starting to get nervous, but he didn't have a fever yet. His drippy nose that started a few days before he was discharged from the hospital seemed to get a bit worse, so we cranked up the humidifier and put his crib on a slant to help him drain. We held tight, just letting the transplant coordinator know what was going on each day. We were up to our elbows in toys, Christmas presents, medications, and medical equipment, and we continued to hope it was just the stress of being home again that was throwing him off.

Yesterday, he threw up about 5 times, and by 5:30pm, he was quite fussy. Gray picked him up for a cuddle and called me in to take his temperature. It was 100.8. We don't have to call the transplant team until he reaches over 101. Well, 10 minutes later, he was 101.6. We waited 10 more minutes, and it had climbed to 102.5. We had the team paged, and by the time the transplant coordinator called back with a plan 15 minutes later, his temperature had reached 103.6. The spike in fever got everyone on edge, and we were told to bring him across the street to the Legacy ER. As Gray was loading him in the car, he threw up everywhere - all over Gray, himself, his car seat, the car. He was tomato red all over his body and just radiating heat. It took two doses of tylenol and a good bout of screaming bloody murder while they reaccessed his port to get get his temp down even a little bit. We reaccessed him because there was a slight tear in his port dressing, leaving him open for a severe infection. He fell asleep when that was over and broke into a clammy sweat as his fever came down into the upper 99s.

The ER team drew blood cultures and a blood count. The epogen we started last week has bolstered his red counts up a bit, not to normal levels but better than when he was discharged - VERY encouraging! However, he was back down to the extreme neutropenia (ANC was below 70 this time), so his hem/onc doctor decided he needed to be admitted. This is new for us to be admitted by someone other than his transplant team, and at first, we were told he would be taken to the hem/onc floor downtown, not the cardiac floor. The transport team came to pick Keegan up at about 11pm from Legacy ER and take him by ambulance downtown. Maddie had to ride in the front of the ambulance, so needless to say, Keegan was not happy - that is until the team popped in a Bob the Builder DVD, and the nurse gave him her badge and pager to play with during the ride! When we arrived, they found out he would in fact go to the 8th floor (cardiac, yeah!!), and they were even going to put us back in Keegan's old room. The charge nurse stopped us as we were loading back into his room and said she thought a different room might bring him better luck this time! All the night nurses came in to say hi. He was discharged Tuesday right before they came on, so they joked that if he had wanted to see them, he only needed to visit, not be admitted!

We struggled getting his fever down until about 5am. He's still having some tummy upset and is pretty drained of energy, but he can turn on the flirting immediately when his favorite nurses walk in. He's on IV maintenance fluids until they can get his TPN here tonight, and they started him on a broad spectrum antibiotic last night. His RSV and viral studies came back negative this morning. We are still waiting on his bacterial cultures for another 36 hours (earliest discharge would be Monday morning probably). The hem/onc attending came in to see him and said they will be starting him on another round of GCSF (the white blood cell stimulator) today. Blood counts will be drawn daily until his numbers come back up. The transplant team checked on him this morning, but they said he is hem/onc's patient until he tests positive for something that could affect his heart. In all honesty, he likely picked up the stomach bug that was going around the hospital for the last few weeks.

Thank you for keeping Keegan lifted up in prayer. We are so thankful to have been home for Christmas and to be blessed with so many friends, family, and loved ones that care so much for our precious Bug. We hope your Christmas was wonderful and slightly less uneventful than ours! ;)

We Made It!

Keegan is HOME!! Yesterday was very stressful and didn't go nearly as planned, but we made it home nonetheless. We got here by about 7pm. Keegan was scared to death of being in his car seat, but hopefully, he'll get used to it again soon. It was a very long night. Keegan was a little scared coming back in the house, and he would scream bloody murder when he woke up in his crib alone. We successfully put meds down his tube at midnight and 3:30am and disconnected his TPN without waking him up. Unfortunately, we somehow forgot to unclamp his relief bag after giving him his enzymes the last time, and by 5am, he was throwing up everywhere when his stomach "fell asleep" and stopped digesting. Fun stuff. He also has a bit of a drippy nose - probably from the dryness at the hospital and heaters.

We are drowning in a sea of medical equipment, and everytime we get started unpacking, we have to stop and give meds of some sort. It is a huge adjustment to getting things done here while making sure Keegan doesn't topple his IV pole on himself. As much as I tried to prevent it, it is exactly like when we came home last year. Completely overwhelming. Luckily, Gray doesn't have to take time off of work to help because of the holidays.

We can never thank all of you enough for praying for Keegan and helping us during this time. My Christmas wish is for Keegan to stay home for awhile this time, and I know your prayers will help him get there.

MERRY CHRISTMAS!!!

Update

Ok, so very quick update. Yesterday things started spiraling out of control, putting us to Christmas Eve or after Christmas for going home. Keegan threw up 3 times; his diapers were questionable, and it appeared insurance was not going to cover his TPN and lipids at home. More than anything, NOTHING was being done in order to get him home. There were miscommunications and very tense moments, and none of our home healthcare was finalized. We had no medications (still don't have them or his TPN as I write this). Keegan has been off TPN for over 24 hours now, waiting for our home healthcare to bring his supplies and trying to switch him to day infusions from night. The nurse practicioner is getting nervous about his blood glucose level and has authorized him to be put on their TPN or a dextrose drip until this is all ironed out. Late last night, we seemed to have gotten everything back on track for going home today, but now we're watching valuable hours tick away. We have said a million times that we want to go home when Keegan will be able to stay home for the foreseeable future (barring any infections or illnesses that may crop up). Now, there's RSV patients on our floor, and the risk of infection here is getting too high. Please, please keep praying for our doctors, nurses, case managers, and of course, Keegan that this all gets sorted out, and we can be home soon. We'll update again when we're either home or if things change.

Thank you, thank you to everyone who has stopped by, called, sent letters, gifts, meals, cards, emails and the like lately. We can never express our gratitude and appreciation to each of you. We have some pictures of visits from Keegan's friends Tucker and Karis to post, but we're still blocked on the hospital networks. Keep checking, and we'll hopefully post next from Plano! Merry Christmas.

Update

I've definitely jinxed it. Our new "outta here" date is Tuesday. We've had some delays getting the home TPN/lipids pumps delivered and getting all his meds ordered and delivered, among other general issues. As we learned at Thanksgiving, getting anything done during the holidays is a pain in the medical world. We're not going to let ourselves get upset about it though, and we're still holding out hope for Christmas.

The transplant team and hem/onc are trying to decide whether to give Keegan another blood transfusion before he leaves. Every transfusion introduces more antibodies into Keegan's system, and should he ever need another heart in the future, it will make getting a match more complicated. Keegan needs something to help him out. His heart rate has gotten to extremely high rates, enough that they put him back on the heart monitors to watch it. His respiratory rate is high, and he is tiring easily, needing a nap about every 2.5 hours. His transplant doctor wants to put him back on a medication he was on after transplant that stimulates blood production. It bought him a good 6 months without needing blood or enormous amounts of iron/folic supplements. The resident on the floor and the transplant coordinators think we should just tank him up with blood one more time before he leaves. Hem/onc was "looking into" the best plan. Gray and I are of the opinion that giving him one more transfusion is no big deal in the long run. Boost him up and at least buy him 3 or 4 more weeks, then let the medications help keep him at the right levels. The last thing we want to do is go in for his regular twice-weekly labs right after Christmas, find out he needs blood badly, and have to end up right back in the hospital for a transfusion. This is our battle right now, and your prayers would be greatly appreciated here. Please pray (once again!) for communication and wisdom for Keegan's doctors that they will make decisions that give Keegan comfort, energy, and the ability to stay home for as long as possible.

Keegan seems to be doing ok on the increase we made yesterday to 30ml/hour of formula through his ng tube. He has also started taking water out of a sippy cup again - huge step forward! He continues to struggle with his stomach stopping processing the feeds every now and then, ususally while he's asleep. One of the GI docs said it's almost like his stomach falls asleep sometimes too. Luckily, we have him hooked up to a relief bag that lets the formula run into it, so that Keegan doesn't vomit every time his stomach stops digesting. When I got up at 6:30 this morning to give him one of his meds that's a rather large volume, I didn't look up to see that he had backed up into the relief bag. Well, the second I pushed that med down his tube (with the relief bag clamped off), he sat up and threw up all over the place. Then, right before his 12 hours of TPN was up, he got his line caught up with the heart monitor box and broke it. Luckily, his lipids were still connected, so he didn't bleed anywhere but back into his lipids. Time for sheet change number two of the morning - TPN smells like really strong vinegar and had to be changed immediately. What a way to start the day!

Other than that, we're just having a calm weekend and setting up our discharge plan. We will follow up at the hem/onc clinic at Legacy in a month. We will see our new GI doctor at Legacy as soon as clinic starts back up after the holidays. GI is making no more changes to Keegan's TPN or feeds until we meet the new doctor after the new year. We have done all his transplant follow-up until the middle of January, and the only other thing is to start his out-patient feeding therapy. He will also likely have physical therapy at home once a week. So, we're getting closer to the "h word"!! Thank you so much for helping us all get this far! We'll update again on Monday. Have a wonderful weekend, and stay warm!

Update

I hate to even put this in writing because I know I'm jinxing it, but the transplant team said this morning we're looking at Monday for going to the "h-word"!!! We shall see, but it's encouraging nonetheless. Not a lot of changes other than that. We've stalled in increasing Keegan's formula intake at the level we started last Monday (24kcal, 27ml/hour). The words "quality" and "dirty" should never go in the same sentence, but unfortunately here they are: the quality of his dirty diapers wasn't as good after we made the jump from 22 to 24kcal. We decided to put off increase his volume to 30ml (or 1 ounce) until today, and then Keegan's sedated echo and EKG got pushed to today also. From past experience, I know that the drug they use to sedate the babies for echos wrecks havoc on Keegan's stomach. It took a little convincing (and some physical evidence in his diapers afterward!), but I think everyone's glad we didn't push him today. The last thing we want is to slide back down and have to wait a week to make the next increase. We will not change his TPN again for awhile, so he will probably be leaving here on 12 hours of TPN/lipids. Today his liver enzymes were high but not dangerously so. We didn't see GI today, but I think they'll put off any further testing for now.

Some other good news from hem/onc. There were no antibodies to his neutrophils detected, so we feel more confident that he's not destroying his marrow at a more basic level. We will continue to support him with the GCSF as needed. Lately, he continues to be moderately neutropenic, nowhere near where he was. The blood cultures from Tuesday are still negative, so we shouldn't need to put him back on GCSF for now. The lab will watch his cultures for 5 days, but it's a good sign that the staph hasn't shown up after 48 hours. His red counts are getting closer to transfusion level, so we'll see how he does over the weekend.

We're doing ok here. If there's one good thing about being here, it's getting to spend a lot of time together as a family. That's truly a blessing at the holidays. We'll update again soon. Thank you, thank you for your prayers, love, and support that have brought Keegan so far in the last few months.

Update

Another pretty good day for Keegan, and we are hoping that we're not imagining that light at the end of the tunnel! The transplant team is at least confident enough to start getting his home healthcare lined up. Then we just have to pull the proverbial trigger when the green light comes on. Remember, we don't say the "h word" until we're actually in the car!

The first bit of good news is that the last test for bone marrow failure came back negative. Yeah! We're still waiting on the autoimmune bloodwork to come back, don't have a date on when to expect that yet. He continues to be neutropenic but not low enough to start the GCSF back up. His red counts are hanging out just above the transfusion treshold too. He did very well in physical therapy today, even taking his hands off of one table to cruise to the next (instead of sitting down and crawling over). One more fun tidbit - Keegan's started clapping!! About 10 months behind the curve, but we'll take it! He makes me laugh so hard every time he does it.

Keegan will start his last dose of the antibiotic in about 20 minutes. Tomorrow, we'll run blood cultures (48 hour wait after) to be sure the staph is gone. Yesterday, he had two really good poops in the morning (something you wanted to know, right?), but he hasn't had any like that since then. This afternoon, we increased the calories in his formula to 24kcal/oz. He's only been on it for about an hour, but so far, so good. Unfortunately, we were once again victims of the miscommunication between transplant and GI. The nurse practitioner authorized a decrease to 12 hours a day of TPN last night. By the time GI came by, they had already cut his TPN off for the day. GI wasn't happy that transplant had deviated from the plan, but they said there was no better time to do a trial by fire then while we're still here. We'll see how his weight is tomorrow. The problem with cutting his TPN too soon is that he is still sensitive to his formula increases. Oh well. Like GI said yesterday, it's a trend, not a day by day.

Keegan had his pentamadine (breathing) treatment today, and he should have his next synagis injection this week too. Wednesday, he'll have an EKG and echo to make sure his heart is ok. He continues to have a very high resting heart rate (167 this morning). Dr. Fixler keeps saying "we're watching it", but sometimes that's just not what we want to hear. Keegan's blood pressure is still a bit high, but so far, they're just playing with his blood pressure medication a bit.

Please continue to keep Nate and Avery in your prayers. Nate did not have a good day today; he's fighting low blood pressure and a fever. Miss Avery is still battling bad labwork and a great deal of discomfort with her tummyaches and constipation. Please pray for God to send his healing hand to comfort and protect these too amazing young fighters. Thank you so much! More later.

Update

Not much new to report today. We finally got access to the picture site this morning, although I’m pretty sure it’s a fluke. I was told at a hospital committee meeting that they are working on getting the networks ironed out, but it will be awhile. I’m sorry the posts have gotten to be fewer but longer. On a day to day basis, things don’t change that much. As GI said yesterday, it’s more of a trend than a daily observation. If it’s ok with everyone, it’s much easier for me to post this way.

Keegan continues to be in a good mood, and we love to see him make the nurses laugh outloud. It's a little too soon to say for sure, but I really think the bile salt binder is working! It may even be helping his liver as an added bonus. Thursday, Keegan only had two dirty diapers and on paper seemed to gain some weight (unfortunately, he was weighed on the "bad scale", the one that is always off). The transplant team got excited yesterday and wanted to increase his feeds again after just increasing them yesterday. When they called GI to confirm, GI got mad basically. GI came to see Keegan and was clearly not happy that the team was trying to change their plans. This has to be a slow and steady progression to allow Keegan's system time to adapt. We have been through this formula progression 4 times already where he does well, they push him faster, and he regresses. GI finally had to put their foot down, so to speak, about staying the slow course. Of course, his weight was down again today, and he's had five dirty diapers, seems to be working on another one as I type this. On the plus side, his stools do seem to be less watery. That's certainly an improvement! Also, Keegan's still neutropenic, but his ANC hasn’t gotten into the severe range yet. Yeah!

Tomorrow, we will increase his feeds by another 2ml. If he does ok with that, we'll increase the calories to 24kcal/oz on Monday. If he does ok with that, then we'll go up another 2ml an hour on Wednesday. If his system tolerates that and his weight is within the acceptable fluctuation, we'll cut his TPN to 13 hours. GI said today that assuming all other things are ok, if he's doing ok on 13 hours, he can go home. That means the staph infection is gone, his liver enzymes are at an acceptable level, etc. Monday we will run an enormous set of labs - blood counts, drug levels, liver and kidney function, fat soluable vitamins, zinc, iron, and probably some other ones I've forgotten. We also will do another set of blood cultures from his port when his antibiotics are done; Fixler said this morning we’ll do that Tuesday, then of course the obligatory 48 hour wait. The remaining send-out labs for genetic testing and autoimmune neutropenia should be back Monday or Tuesday.

We are certainly encouraged by Keegan's progress, but we are also cautious in our optimisim. We are not expecting a smooth ride through this plan, although we would be thrilled to be surprised! Even when we get home, then what? Another twist to Keegan's road. We are so grateful for your prayers. Just realizing how far Keegan has come in the last two months - the power of prayer and the mercy and grace of our God is amazing. Many of you have said you prefer to have specific prayer focus, and sometimes that is very hard to put into words. I spent a lot of time reflecting in prayer last night, wondering exactly with what it was that I needed or even should be asking God’s help. I think it is this - please pray for comfort for Keegan during this transition to less TPN and more formula. We don’t ask that it go perfectly, that there are no setbacks. We just ask that the Lord help Keegan find his balance on his own time and that he can go home at the right time, meaning when he’s ready to stay home. That is our ultimate wish – to go home and stay home. The sooner the better, obviously, but more importantly when Keegan is ready and stable.

Tonight, I would like to ask you to add two more kiddos to your prayer list. Nate and Avery. The moms of both of these amazing kids are on my hospital workgroup. Nate is 5 years old and currently in the ICU here at Children's. He is very sick, and he needs your prayers. Please pray that Nate's ph levels come down enough that he can come off chemical paralytics. Avery is 3 years old, and thankfully, she is home right now. Avery has had quite a few concerning labs lately, and she continues to struggle with many GI issues. Please pray that she is able to fight her battles at home and that her pain and discomfort is reduced. Thank you so much for including these little angels in your prayers.

Check out our new pictures and a little video from the Children’s tree lighting last week. Have a great one! More later.

Update

I apologize for the lack of posts. Once again, we are victims of the hospital wireless networks. I can now access this website. I still can't get on his photo site, and boy oh boy, do we have some pictures for you! We'll figure out a way to get them up, so keep checking. More on that in a minute. Now, are you ready for a marathon update?

First things first, how is Keegan doing? His attitude and energy are still the same. He loves to flirt, and he is still cruising the crib. The last few mornings he has been pretty ornery, but he improves after his morning nap. He still sleeps much more than other kids his age - won't see me complaining about that though. The infection and bone pain caused by the GCSF caused him to regress a little on his walking/standing unassisted in the last week. Today though, the physical therapist thought he did so much better. We had negative cultures late Saturday, so that was considered day 1 of 10 on the IV antibiotics (ten days will be next Monday). However, ID (infectious disease) said not to celebrate too soon because sometimes they will still get a positive culture towards the end of the 10-day cycle, a sort of sampling error if you will. So, we'll have to check that again. If the next set of cutures is negative at the end of the antibiotics, we'll consider the infection cleared. He's been fever free since last Friday now. We stopped the GCSF over the weekend because his white count and neutrophil counts were up, but they have come back down now. His ANC is 870 today, so he's again moderately neutropenic. We will probably check again tomorrow. I anticipate if he drops below 500, they will start the GCSF again since he is being treated for an active infection. His red counts are coming back down, and if they continue at the current rates, he'll need blood again at the beginning of next week. Friday will be three weeks since his last transfusion. The last remaining send-out labs for bone marrow failure disorders should be back next week also.

On to GI issues now...Keegan's liver enzymes skyrocketed despite cutting his lipid and TPN rate the last few days. That alone caused him to lose a bit of weight each of the last three days, and now, we've had to cut his TPN down to 14 hours a day. That helped bring his enzyme levels down a bit, but he'll probably take another cut in his weight. We are trying to counteract that by increasing his calories in the formula a bit. We also are doing a trial run of a bile salt binding medication to see if it helps. Supposedly if he has a bile salt absorption issue, this medication will work for an immediate result. If it doesn't, then he is absorbing bile salts fine, and we'll stop the med. No harm, no foul. We're trying this because we haven't seen as much of an improvement with the pancreatic enzymes as we had hoped. He's only had two doses of the bile silt binder, so we'll see how he does after 24 hours on it. He's down to about 6 dirty diapers a day, and yesterday he was back to 18 pounds from 18.3.

We met today to form a plan for going home. Keegan will need to be cut down to 10 to 12 hours of TPN a day (preferrably 10) and at a volume/caloric combination of formula that he at least maintains if not gains weight over a 2-3 day period (meaning his weight can fluctuate a bit, but he needs to at least not lose weight continuously). Additionally, his liver enzymes need to come down closer to normal. The plan for now is to maintain 14 hours of TPN, increase his volume by 2ccs/hour on Friday (and again on 2 day intervals), and check his liver enzymes again Friday or Saturday. We won't cut his TPN again until he's at a better caloric intake of formula to support his weight. If his liver doesn't seem to be responding to TPN adjustments as expected, we will have to (in the words of the GI attending) "broaden our evaluation" for different causes of liver failure. To that end, the only other thing they're checking as to his liver is whether he has been exposed to rhinovirus (the cold virus), which he obviously hasn't since he has no runny nose or cough or anything. Evidently, that can cause the liver enzymes to go up, but until those cultures come back negative (as we're expecting), Keegan has been put on contact precautions. That means everyone supposed to wear the isolation gowns, gloves, and masks. It also means he can't leave his room. Oh what fun. The TPN and formula combination is an extremely delicate balancing act, and it is completely up to Keegan and his system as to how quickly or slowly we can find this perfect mix of TPN, formula, and making his liver happy. We need to be able to support Keegan with this mix at home so that he can focus on outpatient feeding therapy, which will take some time.

Now for the fun stuff! Monday was exciting. The morning started off with a visit from the Dallas Cowboys and the cheerleaders. Keegan got to meet Jason Witten, Demarcus Ware, Marion Barber, Kevin Barnett, and a few others. We have pictures of that to post obviously. He was a hit, high-fiving all of them down the line. It was hysterical because if they asked for a second hi-five, he would shake his head "no." They were all very nice considering Sunday's loss, and Keegan got an autographed team pic and a Cowboys teddy bear to keep. Monday night was the Children's tree-lighting ceremony. We went outside to watch. Thankfully, it was warm but windy. We saw the Borden's cow, Elsie, on her Little Red Engine train. Very interesting. Then, Santa and one of his reindeer, Vixen, came to help light the tree. Santa said in his many years of coming to Children's, Keegan was the first baby to reach for him. I guess most are scared of Santa but not our Bug! Keegan also launched himself into the arms of Miss Texas, prompting Gray's lovely response of "that's my boy!" There are plenty more fun holiday happenings in the coming weeks here, so we're hoping Keegan will be able to participate in many of them while he's here. Please continue to check his picture site as we try to get access to be able to post pictures of Keegan's adventures.

GI and transplant team said today that while it is still possible, they are making absolutely no guarantees at this point that Keegan can or will be home for Christmas. We're ok with that for now. We want him home when he is ready and stop this bouncing back and forth. At least now we have concrete goals for getting there. Thank you so much for your prayers and love as always. Hopefully by posting his "going home goals", we can reach them easier and faster with your prayers. Thank you so very much.

Update

Good and bad news today. Good first ... Keegan weighs 18 pounds exactly today!!! TPN and lipids are beautiful things. Keegan's gaining despite cutting back to help his liver. Thursday, he weighed what he did when he was admitted on October 14th, and now he is past that a little. Also, his white blood cell count is 6.4, and his ANC is 1700. That is the highest he has ever been in all of those numbers. For the first time, he is officially not neutropenic. YEAH!! The GCSF is finally working, and that is great news considering the following bad news. The staph has grown in his blood cultures from the peripheral vein (not his port), which means the infection has spread through his blood stream. Dr. Fixler contacted Infectious Disease immediately. They have advised to stay the course of the antibiotics he is currently on, and we drew a new set of cultures today. ID was hopeful that the infection can still be treated with the antibiotics without having to pull his port. It is encouraging that it took almost 48 full hours for the cultures to grow, maybe indicating the infection is not too angry. ID thought that with the last few days of antibiotics, today's cultures may even be negative. Still, that takes 48 hours at least. He will need 10 to 14 days of antibiotics, 24 hours of no fever (which he's already met, last was Thursday night), and two negative cultures from separate days (48 hours each). Needless to say, we're not going anywhere soon. Hem/onc will likely leave him on the GCSF (white blood cell growth factor) a little longer now too as an added precaution. His blood pressure and heartrate are still high, but we're hoping that is a reaction to the infection.

Keegan is still feeling the effects of the infection and bone pain. He slept well from 3am to 9am, which he desperately needed. Big Daddy came to play and watch Keegan while I got dressed, and Keegan had a grand time with him as always. We even gave Keegan a bath, new Christmas pjs, and sank a new ng tube to give his poor, little cheek a break. He still can only go 2 or 3 hours without a nap, and right as he was crashing, some of the characters from the NM Adolphus Children's Christmas Parade came to the floor. The entire Bearenstein Bears family came into the room. Unfortunately, I didn't have the camera on me, but Keegan wasn't too happy to see them anyway. He gave one of them a high five, but that was about it. At least he let them in the room. Yesterday, some of his favorite nurses who were other characters in the parade came by the room, but he was feeling too puny to see them. He gave Ms. Pam and KK some good smiles this afternoon and showed them his new little trick - "give me some skin". A variation on a high-five, but he thinks it's hysterical.

This afternoon, we took him outside to get some fresh air. Workers are checking all the lights and decorating the big tree in the circle for the grand lighting ceremony Monday night. I really hope he's feeling well enough to meet Santa on Monday! We tried to take pictures by one of the smaller trees in the courtyard, but Keegan wasn't as cooperative as usual. He played for about five minutes on the play area before needing to head back to his room. He is starting to stand on his own for a few seconds at a time before sitting. The physical therapists have been very impressed with how far he's come since they started working with him. They think he's just about strong enough to be able to walk once he decides he is ready to try. Mind over matter there. Gray put the Christmas tree up at home this morning. Thanks in advance to Mamie and Ms. Denise for decorating the house for us. How nice it will be to have the tree up when we get home for Christmas (hint, hint - positive thoughts, positive thoughts)!!!

Please keep praying that Keegan will be able to fight this infection. He will need all the help he can get considering his defenses are so low. We could not be more thankful for the continued support of each of you and all of those to whom you've spread Keegan's story. We love to hear about people he's never met praying for him and how far his prayer network goes. Thank you so, so much! Have a wonderful weekend.

Update

Yesterday the blood cultures from Keegan's port site grew a staph bacteria. We've continued him on the high-powered antibiotic until we determine the sensitivity of the bacteria to a particular drug. The staph is a common one that most of us carry on our skin and mouths, not the big scary MSRA type. The transplant team thinks it may have infiltrated his port when he chewed on the fitting during last Saturday night's bloodbath. Hem/onc does not rush to take an infected port out until it proves drug resistant or spreads to the rest of his blood. So far the cultures from a peripherial vein have not grown the same bacteria, which is a good sign. Hem/onc did say that he must have two cultures be negative for at least 48 hours before they would clear him to go home, and he will likely stay on the GCSF (white blood cell growth factor) a little longer than he otherwise would have. We had a scheduled reaccess of his port yesterday, and when we took the needle out, the site was kinda crusty and irritated. It wasn't pussing though, so hem/onc thought it best to reaccess so the antibiotic would be delivered straight into the site. The GCSF has "raised the floor" of his white cells (these are the cells that fight infections). He is now moderately neutropenic (baby cells, up to 800 from 70, normal is over 1500), but his white count (mature cells, normal response to infection would be 15-20 or higher) hasn't gone above 3.5. Giving the GCSF gives him some extra fight though, so we're hoping it combined with the antibiotics will be enough to fight off the staph. He also

Another issue cropped up with his labs yesterday. His liver enzymes were insanely high. GI had a sonogram done of his liver and gallbladder done late last night to make sure that he didn't have any build-up there. He didn't, so we'll tweak his TPN and lipids again to give his liver more of a break. He still doesn't seem to be responding well to the enzymes, and tomorrow was GI's deadline for that. Now, they've said all bets are off when he's on antibiotics. We're going to forge ahead with trying to increase his volume and see how he does. We'll also increase the amount of enzymes he gets each da. With his liver starting to have problems with the TPN, it's all the more important to get him to absorb more of his food.

Overall, he's in a slightly better mood today. He hasn't had a fever since last night (101.4). He actually stayed up for about 3.5 hours before his morning nap, so that was a vast improvement. He is still more irritable than normal, but he put on his best happy face when Ms. Abby, our neighbor and gf Lainey's mom, came by for a visit. He slept a little better for Gray last night, but he's still pretty uncomfortable when he sleeps. The GCSF can cause bone pain and a little fatigue, so that's probably a big part of it, especially combined with the infection. He was up way too late last night with the sonogram, the antibiotics, and the reaccess issues. Hopefully, tonight will be better.

We appreciate your prayers for all of us. We're trying to stay positive, but it gets harder as the weeks go on. We'll update again over the weekend. Hope you have a great one.

Update

Keegan's white count got even lower yesterday, specifically his neutrophil (baby white cells) was extremely low. Normal ANC (absolute neutrophil count) is anything over 1500 units per deciliter of blood. Severe neutropenia is considered a count of under 500. Keegan's was 70. Even though the transplant team was freaking out, hem/onc wanted to wait until he became symptomatic, i.e. had an infection from not being able to fight it. Yesterday afternoon he had a temperature of 100.8, so hem/onc recommended giving him GCSF (granulocyte-colony stimulating factor) to help boost his white count to fend off an infection. In the middle of night, his temp went up to 102.4, so we drew cultures from his port and another vein. So far, those cultures are negative. However, he still is having high temps, chills, high heartrate, blood pressure, and respiratory rate. Every 6 hours when the tylenol wears off, he spikes back up to 102 or higher. We started him on an antibiotic as insurance for his heart, and he will stay on the GCSF until he is fever free for 24 hours and negative cultures for 48 hours. He's sleeping a lot and just feels rather puny.

We met with hem/onc today. They are still waiting on a few tests, but the possible things it could be are all treated the same way - with GCSF. So, as long as he beats this bout of fever, he's cleared by hem/onc to go home. GI wants to wait until Saturday to see if the pancreatic enzymes work. If they do, we'll go up on his volume of feeds over the weekend to make sure he handles it ok. I guess we'll cross that bridge when we get there if the enzymes don't start working.

Please, please continue to keep Keegan in your prayers. We are getting pretty tired of this rollercoaster ride. We just want Keegan to stabilize, especially with his GI issues. His blood will be a constant battle during his life, especially if any of the remaining tests come back positive. It's an identifiable problem though. We desperately need to find a way to help Keegan process his food better and get him off or at least on much less of the TPN. My mind is swimming right now, so I can't really even give you any prayer focus right now. It's time to get the Bug ready for bed. Tranpslant coordinator Stephanie just came in to say hi. Looks like another little girl is getting her miracle tonight. She is 7 days older than Keegan, and she has been waiting awhile for her heart. If there's one thing we can certainly ask for, it is for a successful transplant and easy recovery for her. Thanks so much!

New photos are up! Enjoy!

Update

Sorry for the lapse in posting. The hospital networks were acting up, and we just had a nice weekend focusing on family. Keegan's condition is pretty much the same. The pancreatic enzymes haven't started working quite yet, but it can take up to a week to see a change in his absorption. His weight is up to 17 pounds now. Making progress there thanks to the TPN. Keegan's white count is very low today, but his reds are just barely in the low range. He should be able to make it another few weeks at the rate his numbers are coming down now. We're hoping to slow the need for blood transfusions if he begins to absorb more nutrients from his food. One fever spike over the weekend, but it seems to have passed. Still waiting to get a report from GI and hem/onc today. If his enzymes start working, we are hoping to discuss going home by the end of this week. You know how we hate to say that word until we're on our way out the door!

Thanksgiving was probably the quietest one we've ever had. The hospital staff was cut to as low as possible, and they tried to send as many kids home as they could. Very quiet on the floor. My family brought plates of my mom's wonderful Thanksgiving dinner up in the afternoon, and we all had our pie and coffee afterwards. Keegan looked too cute in his fall outfit, even if it was a little big for him. The rest of the weekend was spent playing with Keegan, watching lots of football, taking big family naps, and enjoying each other's company.

I wish I could say it was truly peaceful, but Keegan had quite a few port mishaps, including a blood bath in the middle of the night Saturday. Gray was here, and Keegan seemed to be restless with some stomach cramping. Gray heard Keegan squeal a little, got up to check on him, and saw blood all over his face. He turned the light on and noticed Keegan had pulled apart a fitting on his line. Blood was dripping out of the port hub, which Keegan decided would be a good thing to chew on. There was even blood backing up into his ng tube! Gray had to sit down and collect himself while the nurses worked to save his port, which they did. One of the nurses said it probably wasn't as much blood as it looked like. Keegan had just "done some fingerpainting with it!" After that, we found a central line wrap for Keegan to wear. One of the oncology moms created it after having similar problems with her daughter. Keegan's a bit small for it, so he looks like he's got a bulletproof vest on under his shirt. Still, it's kept the fittings out of his reach and reduced his tendency to crawl and stand on his lines.

I'm going to try to post some pictures soon, but with the wifi down, connection is really slow. Keep checking though for some new pictures of Keegan in case I happen to get it to work. Thank you as always for your prayers and support. I hope you all had a safe, happy Thanksgiving.

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.

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.

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.

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.

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.

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.

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!

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.

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.

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.

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.

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)

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.

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!

Evening Update

Keegan did fine through the surgery and CT. The surgeons were able to get the port in and preserve his jugular veins for future cardiac purposes. The port is working fine and is now being used to give him IV fluids. We'll start him back on TPN tomorrow. Finally, Keegan has a permanent access point to help keep him stable through all of this. The bonus is that he’ll have it for a long time to make labs much easier. The ENT surgeon took a biopsy of the lesion on Keegan's throat. He said it appears to be nothing remarkable, like an ulcer; however, we won't know for sure until the biopsy results come back in 3-5 days. If it is a benign ulcer, the question becomes why hasn't it healed. They would have expected it to heal by now, despite his immune suppression. Keegan was back in postop recovery after the CT scan by about 4:30pm. He has been asleep for most of the afternoon and evening, which of course means he'll probably be up all night. We were not able to have the care conference today, as Keegan did not get out of surgery in time. It is now scheduled for tomorrow morning at 10:15am.Unfortunately, we don't have many answers right now from the CT. Dr. Brown came up tonight and consulted with the radiologist. It was odd because it looked like all the contrast had settled on one side. They couldn't see anything but air on the right side of his body. Dr. Brown ordered an xray to see if the contrast had finally made its way through Keegan's system. The xray showed that the contrast had in fact made its way through. There seemed to be no malrotation or flipping of his colon. There does seem to be some pooling of contrast in his bladder. That is obviously secondary to everything else we’re dealing with, but Dr. Fixler did order a 3D sonogram of Keegan’s bladder tomorrow to investigate that further. I’m giving the bare bones description here because otherwise you’d be reading a novel. Once we have definitive answers, we’ll let you know. At any rate, whatever is happening in his bladder doesn’t seem to be bothering him too much because he’s still urinating and doesn’t have a urinary tract infection or blood in his urine.The resident on the floor tonight was relaying this most recent info to Dr. Brown, since he left before the xray results came in. His plan is to consult with Children’s GI to schedule Keegan for a colonoscopy. It could happen Saturday, but it may not be until early next week. We’ll keep you informed as we learn more.For now, Happy Halloween! Keegan, a.k.a. the Itsy Bitsy Spider, will surely be the hit of the Children’s Halloween happenings tomorrow. We’ll take as many pictures as we can. Please pray that Keegan feels well enough tomorrow to participate and that he has a restful night. We are working as hard as we can to help find an answer to help our little Bug. It is extremely frustrating that every diagnostic Keegan’s been through lately has ended with the phrase, “well, the good news is everything’s normal” when we know for a fact that something is very wrong. We told the doctors tonight that we’re to the point where we’re not so afraid of it being something “bad” per se; we just want to know what it is. Thank you as always for your love, prayers, and support. More tomorrow.

Update

It's now almost 1pm, and Keegan's been in surgery for less than 30 minutes. He was not taken down at 7:30 as planned, and his IV from yesterday blew sometime between 5:30 and 6:30am while he was sleeping. They stopped pedialyte down his tube around 4am, and then, we lost IV fluids about an hour and a half later. Keegan obviously needed an IV for surgery, so he had to be poked yet again to get that. Luckily, they were able to get one started on the floor to provide fluids for him until he could be taken in for surgery. He's still having diarrhea, despite having nothing in his tummy except pedialyte since 5pm Tuesday evening.

Needless to say, Gray and I are very unhappy with the events of the last few days. We've called a care conference of his doctors at 3pm today, and we're just hoping he'll be out of surgery by then. We were able to schedule his abdominal CT scan for immediately after surgery. He will remain sedated and the OR team will bring him to CT. This way, we will at least avoid another immediate anesthesia.

Prayer requests:

1. Of course, our immediate prayer is that Keegan does well in and coming out of surgery and that the line insertion, biopsy, and CT scan proceed without complications. We ask for rest and comfort for Keegan as he recovers and prepares for the testing that will follow.

2. Please pray for his all those caring for Keegan. We ask for clarity in their treatment of Keegan, for cooperation between them, and that they are able to find a diagnosis for Keegan.

3. Lastly, please pray for patience for Gray and me. We are getting extremely frustrated with how Keegan's care is being handled, and we must be patient in our conversations with his doctors, so that all of Keegan's needs are met.

We'll update again tonight when we have more information. We are so grateful to have friends and family that care so much about all of us.

Central Line tomorrow

Just a quick evening update. Things were tense again today, as it took until after 2pm to get Keegan to radiology for the MRV and get an IV started. However, once he was sedated, the anesthesiologist was able to quickly get an IV started, and they pumped him up on fluids during the scan. Keegan did well with the anesthesia for the scan, and he's a little crabby but ok now. We just got a read on the MRV, and it looks like most of the preferred access points are good. Since the scan took so long, Keegan is now scheduled for surgery to get the portacath inserted tomorrow morning at 7:30am. He is the first procedure of the day, and since he is inpatient, he shouldn't be bumped by anyone. We were hoping to get his CT scan tomorrow to avoid yet another sedation, but that's not shaping up. An ENT consult will be there in the OR tomorrow to take an actual biopsy of the lesion on his throat since it's still there. Lastly, as we expected, his blood cultures and stool studies were all negative for infections.

Thank you for your prayers today. The Lord has once again sent his angels to stand guard over Keegan. Keegan did very well with sedation today and getting the IV started. We are hoping for some great rest tonight to prepare for tomorrow. Please continue to pray for Keegan's surgeons and for continued clarity and cooperation from and between his doctors. Thanks so much. We'll update later tomorrow.

Update

Dr. Brown came by late last night and recommended a good plan of action. The first and most important thing is to get a reliable access point on Keegan for fluids, nutrition, and IV drugs. We've tried both hands and feet in the last 24 hours for IV access, and each vein will draw blood but won't flush. Since picc lines are very fickle and short-term, the consensus was that Keegan will need another central line. This time, they are planning to do a portacath which will sit just under the skin, rather than a broviac line like he had before which hangs out of the body. Portacaths can be left in for a year or more if necessary, and you would never know he had it in unless it was in use. Unfortunately, Keegan has had so many veins accessed over the last year, that the surgeons asked for an MRV (Magnetic Resonance Venogram) or venous study to make sure they had a clear path before cutting him open. This is basically an MRI of his blood vessels to see which ones may be usable. Hopefully, the anesthesiologist for the MRV will be able to get a basic IV started while he's sedated and not in pain. We are grateful that they are being careful, but scheduling all this is a slight nightmare. We really wish that he can get the MRV completed and go into surgery for the central line today. Keegan has not had any nutrition since the diarrhea increased yesterday around 6pm. He cannot have anything in his ng tube now in case they can get him into surgery; he has to not have anything in his tummy for anesthesia. Without a central access point, he can't even get TPN, and we really don't want him losing even more weight.

The next step after making sure we have a more permanent access point is to do some more exploratory procedures to find the root of the problem. All his cultures (blood, urine, stool, bowel biopsies, and throat cultures) have come back negative so far, and everyone is fairly confident they will stay that way. However, the inflammatory markers in his blood are up, so there's some kind of infection somewhere. Dr. Brown said best case scenario is that Keegan has a walled-off abcess in his abdomen from his old PD catheter or bypass. That happened to Gray when his appendix ruptured at sea four years ago. We will start with an abdominal CT scan, and if that isn't conclusive, Keegan will have a colonoscopy. We may even be able to get the CT done after the MRV while he's sedated, but they're still working on it. We also still have the strange lesion on the back of his throat; all cultures of it are negative, but it's still there. They're asking dental and/or ENT to come take a gander at it.

Obviously, with surgeries, procedures, fevers, and weight loss, we will probably not be going home anytime soon. Funny how you can be born, have open heart surgery, go on ECMO, have a heart transplant, and be home in one month flat. The GI system is just mysterious compared to the heart, I guess. Considering Keegan does need to be near his transplant team, Dr. Brown is going to ask GI from Children's to take over the procedures that need to be done, rather than have him transferred to Medical City. He will remain Keegan's primary GI, but he will now be handing off part of Keegan's care to Children's GI, hopefully to the head of the department himself.

The nurse practitioner just came in and said he's scheduled for the MRV at noon now. We'll update later with more information. Thank you as always for your concern for our Bug.

Prayer requests:

1. Please pray that Keegan does well with sedation and can at least get an IV started until this is all over.

2. Please pray that the central line goes in well and heals up well.

3. Please pray for rest and peace for Keegan as we search for an answer. Of course, pray for a diagnosis for Keegan, but until we get that, we ask for comfort for Keegan.

Update...NOT from home

Submitted by Gray on Tue, 10/28/2008 - 8:08pm.
Last night, Keegan spiked a fever of over 101 right after I posted, right as Gray was loading the car up with most of our stuff in preparation to go home today. When a transplant spikes a fever, they have to draw blood cultures. They drew from his picc line and from a different vein to determine if there were any infections related just to the picc or in his blood system. That alone bought him another 48 hours here to watch the cultures. He had a horrible night with cramping, fever, and diarrhea.

This morning was just as bad. He wouldn't let me put him down even to change his diaper, so I couldn't even go to the bathroom. The team needed to start him on IV antibiotics, but couldn't get one started even after three tries. Of course, Keegan was so upset during the IV attempts that he pulled his ng tube out. We had to sink his tube back and give him a shot of antibiotics since the IV didn't start. It was awful. Dr. Brown asked for more stool studies to double-check that Keegan hadn't picked up any new infections during the last two weeks in the hospital. We are extremely careful about making him wear a mask, but you just never know when you're here what can happen. Right before we got the order for samples, Keegan's diarrhea got much, much worse. We've stopped his feeds until Dr. Brown comes tonight to conference with us. His fever is still going strong, and so far, the cultures are negative.

We're not sure what will happen if the cultures come back as negative. Obviously, Keegan will need some more investigative procedures to determine the root of the problem. We're here at least until Thursday for now. We'll let you know more as we know more. Please, please, please continue to pray for Keegan. He desperately needs it now. Thank you.

Home tomorrow?

After this weekend's failed trial of increasing calories, Dr. Brown said we'll need to make the increase at a much slower pace, like over weeks instead of days. That makes it unreasonable to keep Keegan in the hospital to watch him. We started the plans to be able to go home today, but as the day dragged on, it became evident that wouldn't happen. We still need his feeding pump for home, meds, flu shot, labs, etc. We also found out that our insurance won't cover the Neocate formula, which of course isn't cheap. For now, we're keeping him on 20kcal formula at 50ml/hour to get him some more calories. Then we'll slowly increase over the next month or so, and start outpatient feeding therapy at Baylor. He weighed 15.4 pounds today, which was a relief.

As I was writing this, unfortunately Keegan had a few bad diapers right in a row with some blood. So, we'll see what they say now. Sending my dad's computer home with my mom for now in hopes that these diapers don't change our plans. Thank you as always for praying for Keegan. Hopefully, our next post will be from home.

Update

Well, Saturday went well until around 6pm. Keegan seemed to be doing ok on 50ml/hour of the 20kcal for most of the day. Around 3pm, we increased his calories to 24kcal, and after about 3 hours, he started having diarrhea again. So we went back to 20kcal, but this morning, he was still having an upset stomach. The GI dietician thought that we may need to alter the plan to reduce volume first and then begin the calorie increase. We decreased his volume to 40ml/hour and are going to leave him there with the 20kcal formula through the day today. So far, so good with that combination. We'll try again tomorrow to increase his calories to 24kcal at 40ml/hour. Keegan's weight is still at 15pounds (it was up to 15.3 yesterday, back to 15.18 today), but he's not actively losing weight anymore like he was last week. You can feel every rib and his little spine when you rub his back; it's so sad. He pulled his tube out again, and we had to sink it back today - not fun. He still does have his picc line. We're still able to use it for blood draws, so at least he's not being stuck every day for labs.

He's still only taking a pacifier dipped in water or a sip or two of water from a cup. He's stopped taking pretty much all of his meds by mouth except for his prograf, so most of them are going through the tube. He's had a temp of about 99.5 since last night; don't know what that's about, but it's not technically a fever until 100.5. The lesion on the back of his throat is starting to heal. The dentist that came up to see him thinks it was part of the hives that just showed up on his throat before his body. The are more red than white now and not as puffy, so the dentist thinks they're healing well, just slowly. They are obviously a big part of why he won't take anything by mouth, and they must itch because Keegan will periodically suck slowly and very deep on his pacifier to itch them.

So, I don't think we'll go home tomorrow but hopefully soon. As we said before, we'll stay as long as needed to get Keegan on the right track and through enough hurdles to feel safe going home. The goal is of course 30kcal formula at 40ml/hour continuously. Dr. Brown said he'll go home on continuous feeds because he needs the calories to get his weight back up. The transplant team is working to get Keegan set up with a feeding therapy program through Baylor Frisco that is supposedly really great. That will be nice since our pediatrician is also at Baylor Frisco.

I was finally able to get some pictures up yesterday morning, so be sure to check those out if you have a chance. We hate posting pictures when he's so skinny, but at least you can get your "Bug fix".

Please pray that Keegan does better as we try to increase his calories again tomorrow. His system has been taxed for a long time, and it will take awhile for it to start working right again. Still, we're ready to see Keegan get some weight back on him and have more energy. Thank you for all your prayers and kindness so far. We are truly grateful.

Update

Keegan is still doing ok with his feeds. Last night right after Gray left to go home, Keegan started to choke and cough, which pushed his ng tube out a bit. He was pretty upset and ended up pulling it all the way out. I had to sink it again around midnight, which required three nurses to hold him down and then waiting for an xray to check placement. We are definitely going to need a sedative prescription to go home with because there is no way I could do that by myself without calming Keegan down first! After that, he slept pretty well overnight. He woke up at 5am pretty fussy, but he finally went back to sleep until 7am. While I showered for work, Gray had to let Keegan sit on the couch with his own piece of the newspaper while Gray read his section. It was the only thing that calmed him down! It was too cute, and we'll post a picture when we're finally able to figure that out.

Dr. Brown came by late last night and was very encouraged that we had found the root of the problem with the Bactrim allergy. This afternoon, we increased his feeds to the 50ml/hour rate Dr. Brown was looking for and turned off his TPN and lipids. Keegan has done very well with the volume, and if he continues to do well with it overnight, they will increase the caloric value of the formula to 30kcal/ounce and decrease the volume to 40ml/hour. This jump in calories is more likely to give Keegan some trouble than the volume increase of the last two days. Please pray that Keegan handles the calories well; he desperately needs them! He is now on just an ng tube. He still has his picc line, but he's completely switched to oral medications now, no IV drips. He is still battling anemia, so he's back on meds to help that. He will continue on with the steriod, zantac, and blood pressure medication for now, and he's on the lowest dose of immunosuppressant (prograf) that he's ever been on.

Keegan's seemed a bit more tired today, but overall, he's still has his smile and is still giving out high-fives to anyone who asks. If all goes well over the weekend, the transplant team is working to have things in place for Keegan to come home on Monday. We appreciate your prayers for Keegan, and we ask that you continue to keep him lifted up. He still has a long way to go, and the strength of your prayers and God's love for him keep him going and growing. Thank you.

Update

The plan changed yesterday after we posted. Keegan's weight was down to 15.3 pounds, and he had been 24 hours without a bowel movement by 4pm yesterday. So with the picc line out of place, Dr. Brown advised to go ahead with starting an elemental, amino acid-based formula called Neocate in Keegan's ng tube. He wanted to start at 5ml per hour (remember there are 30ml in 1 ounce) and increase by 5ml every 4 hours until we reach 50ml. If all goes smoothly, we should reach the 50 mark late tomorrow evening. If he is tolerating the 50ml, then we should be able to go home with the ng tube and feeding pump and begin feeding therapy on an outpatient basis. So far, we're up to 25ml/hour and doing pretty well. He's only had one dirty diaper. It was not great, but not enough to stop the feeds. Keegan was a bit uncomfortable overnight, but we think it was just getting used to having something in his stomach again. He is in a much better mood today, and he's been playing and standing for longer periods of time. It's nice to see he hasn't lost his smile and laugh through all this. His weight is up just a touch today, which is also encouraging.

Thank you as always for keeping Keegan in your prayers. We are so blessed to be surrounded by such loving and caring friends and family. I'm trying to post a few pictures, but we're having a bit of difficulty with that right now. Keep checking though because we'll keep trying! Thanks again.