Monday, December 29, 2008

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!

Sunday, December 28, 2008

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.

Saturday, December 27, 2008

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! ;)

Wednesday, December 24, 2008

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!!!

Tuesday, December 23, 2008

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.

Saturday, December 20, 2008

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!

Thursday, December 18, 2008

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.

Monday, December 15, 2008

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.

Saturday, December 13, 2008

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.

Wednesday, December 10, 2008

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.

Saturday, December 6, 2008

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.

Friday, December 5, 2008

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.

Wednesday, December 3, 2008

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!

Monday, December 1, 2008

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.