Thursday, October 30, 2008

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.

Wednesday, October 29, 2008

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.

Tuesday, October 28, 2008

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.

Monday, October 27, 2008

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.

Sunday, October 26, 2008

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.

Friday, October 24, 2008

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.

Thursday, October 23, 2008

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.

Wednesday, October 22, 2008

Update

Keegan did ok yesterday. He was in a decent mood much of the day despite a few problems. His picc line has migrated out of the vein it should be in. It's not a huge problem, but it means we can't increase the strength of his TPN to an ideal amount. The smaller vein the line is in can't handle max glucose. We tried a "power flush" of saline to try to push it back here it should be, but that didn't work. The picc line team can't get him on the schedule until Monday to go to interventional medicine to get it fixed. So, the plan now is to start pushing his stomach to wake up and tolerate more. We tried some pedialyte yesterday, but his oral aversion to food is pretty severe. We could only get him to take about 3ml of pedialyte yesterday between the bottle and a feeding syringe. We don't know if it's related, but last night he seemed to have some more stomach cramping for about an hour before he tuckered himself out. He's still pretty low on energy, but we're getting a few more smiles and a bit more playtime in a period now. His weight is down to 15.75 pounds.

He slept very well last night and has been in a pretty good mood so far today. He will not take a bottle at all, but he has had 5ml of pedialyte by syringe. We're going to forge ahead with an ng tube today. Dr. Fixler said they will let him try to take some by mouth for a period of time, and then supplement by tube. We will start extremely slowly with just a small amount of pedialyte at a time to "wake up" his stomach. He has only had two little bowel movements each day this week. It's definitely slowing down. He had a lot of blood in his diaper over the weekend, but none since then.

Keegan played on his own in his crib just long enough for me to type this up, but it looks like he is getting a bit tired now. We're hoping to go back to the playroom for some playtime this afternoon, and we try to walk around the floor a few times a day in his wagon. We'll post more later. Thank you so much for continuing to lift Keegan up in prayer. We're here for the long haul, not going home until things are back on the right track for good. Thank you for your continued love and support.

Monday, October 20, 2008

Update

I'm so sorry we didn't get a post up yesterday. We couldn't get the journal to work. We even took pictures that we tried to post, but even that wasn't working. Keegan's room is on the back side of the hospital, so we get very little cell reception for the sprint card. We're still here though!

Yesterday Keegan did a bit better. The hives have been completely gone since yesterday around midday, and he hasn't had a bad diaper since last night around 8pm. He held his head up for about 10 minutes at a time throughout the day, and he sat up on his own twice, even made a slight effort to play a little. He is now down to 16 pounds even. That should start coming back up once his TPN drip starts. He had trouble sleeping last night until about 2am, but then he slept well until about 7am. He hasn't been quite as chipper today. This morning, he had the pic-line put in. To clarify, that is a larger IV line that goes in at the crook of his elbow and snakes into the larger veins near his heart. This makes it usable to take blood for labs and administer larger volume through the line, specifically the TPN. That required anesthesia, so he's been pretty fussy and tired today.

The plan is to start TPN this evening and try some pedialyte tomorrow if he's still tolerating everything else well. Then, he will be on a clear liquid diet for 4 to 6 days to let his stomach heal after being raw for the last several months. We are praying that Keegan is willing to try his bottle again. He will remain on TPN with the pic line until he is able to start formula by mouth again. Dr. Fixler said this morning that he would like Keegan to stay here at the hospital until we are confident he will eat on his own with no adverse reactions, just to be safe.

He's pretty tired today, but we may try to make it down to the playroom this evening to decorate some pumpkins. We'll have to wait and see! We'll charge the camera back up and start posting more pictures soon. Thank you so much for your continued support and prayers for Keegan. We are so grateful for your kindness and compassion during these times. God continues to lift Keegan up and bring him fighting through the hard times. We are grateful for His unending love and mercy.

Saturday, October 18, 2008

Update

Good Afternoon Everyone…

I just wanted to leave a quick update for everyone checking in on Keegan. Maddie stayed with him last night. I think overall we had a pretty good night. Maddie reported that he was up and down with some stomach cramping and scratching of the hives. They have continued to administer steroids to keep the hives down and they have seemed to help. In the meantime we have waited to hear about the pic line. The staff has tried to do everything they can to get it scheduled but it looks like it will not happen till Monday at the earliest. In the meantime they have started administering lipids to make up for some of his nourishment needs.

We really are starting to feel more confident that the Bactrim he was taking might be at the root of most of his problems right now. We started reading some of the literature on the medication and its side effects and they seem to account for a lot of the signs and symptoms that Keegan has been showing. We will keep him on gut rest until the Bactrim seems to have worked its way completely out of his system.

Thank you for keeping Keegan in your prayers… they are making a difference! Have a great Saturday.
Gray

Friday, October 17, 2008

Update

Perhaps we posted too soon yesterday. Keegan has had a pretty awful time since yesterday afternoon. From about 3pm on, he was either asleep or screaming/thrashing in pain. He would not let anyone, even me, touch him. His stomach was cramping terribly, and we could not soothe him until he would eventually pass out. The doctors decided to put him back on gut rest, so we started his IV fluids again. About that time, he developed a terrible rash. We gave him some benadryl, but it appeared to be hives. We couldn't figure out what he could possibly be having a reaction to at this point. His tummy still seemed to be othering him the absolute most, so around 9pm last night we took him to radiology for a procedure to diagnose and correct intussusception, a condition where the intestine telescopes over itself. Unfortunately, that wasn't the answer either.

We went through the whole night like that, knowing that Dr. Brown would be here this morning to conference with Dr. Fixler. After his morning meds, the hives got a lot worse. Dr. Brown actually was happy to see that - he thinks that Keegan has developed an allergy to Bactrim, one of his medications. He said there are very few things that can cause you to continue to have watery stools when you're not taking in any nutrition. We can rule out pretty much all of them, leaving us with it most likely being a reaction to one of his meds. This makes some sense because until now, Keegan always took Bactrim with food. That would also help buffer a reaction; now, he has nothing to buffer it at all. So, the plan of action is to stop all of his medications, except for his Prograf (immunosuppressant). We're going to start him on an IV drip steriod twice a day to help ease the rash and itching. They are scheduling him to get a pic-line to start giving him some basic nutrition. Then, we watch and wait. If this doesn't work, the next step is an abdominal catscan. If it does work, we will have to wait for him to be able to eat normally again and change his med schedule to avoid this problem in the future.

Keegan finally fell asleep again. He is still in a lot of pain, looks terrible with the rash, and is very itchy. Hopefully, it will not be for much longer. Please pray that this is the answer we have been so desperately looking for these past months. We greatly appreciate your love and support through this ordeal. We will likely be here in the hospital through next week, but if it helps Keegan feel better, we will stay here as long as he wants!

I guess decorating the door didn't work, but it looks GREAT. Thanks, Aunt Alex! We'll bring the camera up to the hospital tomorrow and take pictures to show you. Thank you again for your thoughts and prayers.

Thursday, October 16, 2008

Update

Keegan slept better last night, which is a big relief. They stopped his IV fluids yesterday in the early evening because he drank a bit of Pedialyte with no vomitting. However, he wouldn't drink the formula, and he is now back to refusing even Pedialyte. If you even start to come near him with a bottle or cup, he screams, even if it's empty. He busted his IV late last night by crawling onto his hands and knees every time his tummy cramped up. They put a new one in the morning with his labs since he hasn't been taking anything by mouth. We haven't started IV fluids up yet, but we may have to again by the end of the day. We're going to try some pedialyte by syringe when he wakes up from his nap and see how that goes. He is still having pretty bad stomach cramping and not normal bowels. Hopefully that will continue to taper off.

We are also going to see a speech therapist to see if she knows any tricks, and the transplant team wants a dental consult to look at the lesions and swollen tissue in the back of his throat. The cultures of the lesions from last week still have not come back positive for anything as far as we know. If he takes the pedialyte by syringe and tolerates it, then we may try some soy formula instead of the Neocate (which evidently tastes terrible). He still needs his synagis injection, flu shot, and EKG. The nurses are decorating room doors for Halloween. We've been hesitant to put K's name on the door recently for fear it would mean we'd stay longer. However, we're going to go ahead and decorate his door up, hoping that karma will work the other way! We decorated his door the first time we were on 8 (after his transplant), and we only stayed 4 days. So maybe this will work! A girl can hope, right?

Please continue to keep Keegan in your prayers. We're are constantly inspired and uplifted by your support. Please pray that Keegan starts to show some interest in food again soon and for his energy to come back. Thanks so much.

Wednesday, October 15, 2008

Update

Keegan’s hanging in there right now, but he still feels pretty cruddy. He was admitted yesterday at Children’s around 3pm and started IV fluids almost immediately. He has been on complete “gut rest”, meaning nothing by mouth, not even water. He slept fitfully last night, lots of tummy cramps and probably pretty hungry. He’s so exhausted that he hasn’t been doing much. Surprisingly, we’re down to thinking this may actually be a milk allergy (different from lactose intolerance) that was masked by his immunosuppression and steriods. We’ve elimanted the biggest problems, like cancer, mega-viruses, and anatomical issues. So, we’re down to “normal baby stuff.” Yesterday, he had an upper GI series of x-rays with barium and a GI sonogram. Those were normal, as are his biopsies from last week. He was so dehydrated yesterday though that Gray and I were worried about his kidneys giving out again. He was having constant diarrhea and began dry-heaving Monday night. He couldn’t keep anything down at all. He has lost an entire pound since we were here last month and now weighs 16.3lbs. With all that, the transplant team was worried that his levels were going to be crazy, so everyone agreed Keegan would be safest at the hospital.

About 30 minutes ago, the doctors approved giving him some Pedialyte. It took awhile to convince him to take it, but he finally drank almost 7 ounces! If he tolerates it well for two feedings, then we are going to let him try some very elemental formula. We’re hoping to maybe go home by Friday. While we’re here, we’ll go ahead and do his monthly EKG to prevent having to come back just for that next week. Unfortunately, there’s no surefire way to determine if it’s truly a milk allergy. We’ll have to give him some time to heal, and then start reintroducing milk products one at a time. If it truly is a milk allergy, it is possible he could “grow out of it”. He’ll likely stay on a liquid diet until he gains some weight back, which will also be beneficial considering he has the pancreatic rest (liquid can get around that easier than solids, and it will get smaller as he gets bigger). Once he’s doing better, he’ll probably have to do some feeding therapy to re-teach him how to eat solid foods.

Please keep Keegan in your prayers for now. We would really like to go home Friday, but we want Keegan to be well enough to go home, whenever that may be. We ask for prayers that he tolerates the Pedialyte and new formula and that he can get some good rest this week. Thank you for all of your thoughts, calls, texts, and emails. We’re so blessed to have friends and family that care as much as y’all do for Keegan and our family. We’re doing ok, but we’ll be better when our smiling, happy Keegan is back for good.

Tuesday, October 14, 2008

Back at Children's

Keegan will be admitted at Children's this afternoon for at least 24-hour observation. His biopsies were normal, and he had the GI sonogram/xray series this morning. He desperately needs fluids and gut rest. We will update with more information and details once we are settled in at the hospital this evening. Please keep him in your prayers for now. Thanks.

Friday, October 10, 2008

Endoscopy Results

Well, the endoscopy gave us few answers. For the most part, everything was normal. Keegan does have a "pancreatic rest" at the base of his stomach. This is basically a birth defect where the pancreas doesn't separate properly from the stomach tissue; this causes a nodule of tissue to take up space at the "exit" of the stomach. It is a condition that they generally let kids grow out of; as he grows and his stomach gets bigger, the nodule will take up less space. Right now, it blocks a good portion of his stomach. Liquids can get around it just fine, but it doesn't give solids a lot of space. This probably is the source of his gagging and vomitting. Additionally, Keegan has some lesions on the back of his throat and swollen adenoids. These are probably why Keegan's stopped eating much lately. Cultures were taken of them to see if they are from a virus, and we should know Monday. Dr. Brown and the transplant team decided to start Keegan on a medication that would treat it if it's the type of herpes that also causes cold sores. We should have that culture and the biopsy results from his esophagus and duodenum by the beginning of next week. Dr. Brown did NOT see any fungus or viral infections or inflammations in the GI tract that he was hoping would be the answer to all these problems.

None of these things explains Keegan's inability to gain weight, the blood loss, or the diarrhea. So, we'll wait for the biopsies to come back, just in case. Then, we will decide where to go from there, probably some other tests, xrays, and stool studies.

Keegan did fine through the procedure. It was very quick, and he had no problems with anesthesia. He drank a bit of pediasure when we got home, and obviously, he was not admitted. Yeah!

We greatly appreciate your prayers today, and we would ask that you please, please, please keep them up. We still don't have an answer to help Keegan start feeling better. We haven't taken many pictures lately, but I am posting a few new pictures that we have snapped. We're trying to get Keegan's two new favorite things on video: making his "monkey face" and saying "uh-ohhh." However, when we pull the camera out, he always stops! We'll keep trying for ya though. Take care, and thank you again for your thoughts and prayers today. We will continue to update as we form a plan for Keegan's diagnosis and treatment.

Thursday, October 9, 2008

GI Endoscopy Tomorrow

I'm sorry it's been awhile between posts. Keegan has been home but not doing so well since he was discharged from the hospital. He was having a lot of diarrhea, has been vomitting, and has been in a lot of pain lately. He hasn't been eating much, and he has been very tired and cranky. Until last night, he had not slept more than a two-hour stretch for almost a month (last night, he made it from 1am to 7am when we had to wake him for an appointment).

On Monday, we went to the pediatrician for a follow-up from his last hospitalization. Keegan had lost even more weight than he had the week before (he now weighs the same as he did in June, 16.5lbs), and he had spiked a low-grade fever twice. She gave us a referral to a GI specialist, Dr. Kendall Brown, at Medical City Dallas, who was at Children's for many years. Both our pediatrician and transplant team highly recommended him. However, his office said he did not have an appointment opening until Oct. 20. The GI clinic at Children's couldn't see us until November!

The pediatrician sent us home to see if Keegan improved the next day, and when he did not, Gray and I insisted that something be done. We were not going to allow Keegan to continue to be in that much pain for any longer. Calls from the team and pediatrician were made, and after speaking directly to Dr. Brown, he insisted that Keegan be seen this morning at 8:30am to schedule additional testing. Everyone agreed that while the c-diff had complicated things as of late, it did not explain his chronic issues, as the c-diff didn't occur until last month. This morning, Dr. Brown examined Keegan and talked to us for a long time about Keegan's history and symptoms. He scheduled Keegan for an esophagogastroduodenoscopy (upper GI endoscopy and biopsy) tomorrow at 12:30pm. This will be performed at Medical City Dallas, not Children's.

Gray and I are quite relieved that all of Keegan's doctors are on board with pinpointing this problem, and we are very happy that Dr. Brown sees the urgency in diagnosis and treatment of Keegan. We have been very frustrated for months, knowing in our hearts that something was wrong but not having any of the doctors take us seriously. We are anxious to help Keegan begin to grow and feel like his normal, happy little self again!

PRAYER REQUESTS:

1. Please pray for an uncomplicated procedure tomorrow. Since this is being performed at Medical City, Keegan would have to be admitted there if any problems should arise. We have complete confidence in Dr. Brown, but we are nervous about having Keegan treated outside of CMC. The transplant team has given Dr. Brown clearance and support, and we ask for prayers that this goes well.

2. Please pray for a sure diagnosis and treatment plan from this procedure. As we said above, we are anxious to have Keegan on the road to recovery and know how to help him get there.

3. Please pray for a simple diagnosis (this is straight from Dr. Brown). He told us to pray that it is a simple inflammatory or infectious problem, easily treated by a short-term medication.

4. Lastly, please pray for comfort and rest for Keegan. He has been so restless and in so much pain. We ask God to grant him the rest and strength he needs to face this procedure, the diagnosis, and treatment.

Thank you so much for your support and prayers. We know God has answered them time and again, and we know that He will not easily abandon Keegan, to whom He has given so much already. We will update tomorrow night with more information. Thanks again.


Jesus said, "I praise you, Father, Lord of heaven and earth, because you have hidden these things from the wise and learned, and revealed them to little children. Yes, Father, for this was your good pleasure. All things have been committed to me by my Father. No one knows the Son except the Father, and no one knows the Father except the Son and those to whom the Son chooses to reveal him. Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light." Matthew 11:25-30