Saturday, February 28, 2009

Update

Keegan's being a trooper, as always. We've had some interesting developments over the last day or so. Keegan had a CT scan of his abdomen and pelvis yesterday that showed his spleen is very enlarged and some other general problems going on. His belly is getting more distended, and he has gained over a pound in the last four days. That's a twentieth of his entire weight, so about the equivalent of a grown man gaining almost 10 pounds in 4 days. Obviously not good weight gain, especially since he is not getting his feeds and with no changes to his TPN. Also, they have put him on daily GCSF to bring his white count up, but he is not responding to it at all. In fact, his counts have gone down every day.

The blood culture from his port drawn in the ER showed another staph infection. However, nothing since then (not even one taken less than 24 hours on antibiotics) has grown back. That makes me fairly confident that it was a contaminated sample, but we'll have to wait for more information on the exact strain to see if I'm right. Until then, they have him on three different IV antibiotics, which makes his diarrhea that much worse. I don't think the fever was from an infection because it broke too quickly. His heart rate has come down, although he seems to be maintaining a slight arrythmia. His transplant doctors are not concerned about it at the moment and are planning to watch it over time. His respiratory rate is much higher than normal, but his oxygen saturations are still good. It may just be harder to get a deep breath with some of the other organs being bigger than normal.

We were told yesterday that contacts were being made at several hospitals to get him transferred quickly. Although, we haven't heard anything today. We'll be sure to let you know as soon as we know. For now, please continue to pray for guidance and wisdom for Keegan's doctors in his current treatment and in finding the best place for him to be right now. Also, please pray that Keegan stays stable and without too much discomfort as we await the next step in our journey. I feel it must seem shallow to end every post with "thank you for..." because that just does not begin to encompass how humbled and grateful we are for the continued support, love, and endless prayers of our family and friends, not to mention those we don't even know. Keegan's fight is far from being over, and we draw so much strength and renewed energy from your encouragement and concern. We are so blessed. Although it might not be enough...thank you.

Thursday, February 26, 2009

More Waiting..Or Enough is Enough!!

We had one good day at home on Tuesday. Yesterday, Keegan didn't look right (swollen, red), and he seemed pretty lethargic and uncomfortable. He didn't tolerate his second feed of the day at all. Around 1am, he hit a pain episode hard and started throwing up again. His temp climbed to about 102, and he couldn't stop vomiting, even though he didn't have anything left in his stomach. We drove across the street to the Legacy ER around 3:45am, and his heartrate was almost 220!! Talk about scary. Of course, we've been in the ER waiting for a room to open downtown since then. At least it's this nice new ER, and not the nasty one downtown. It's almost noon on Thursday, and the nurse just popped her head in to say the ambulance is finally here.

We'll update again later when we have more information. This is getting absolutely ridiculous though. We are drawing the "line in the sand". If the docs can't figure this out here, we WILL be transferred to another hospital that can help him.

UPDATE 6:40pm - Keegan is on the cardiac floor and back on heart monitors. His fever broke this morning without too much trouble, and his heartrate is better, though still high. So far, we have not heard of a positive culture or results from his abdominal xray. He is scheduled for an abdominal CT scan. The plan per our primary transplant team and the GI department chief is to address any acute issues that caused Keegan so much pain last night. Then, we will be seeking an immediate transfer to a larger hopsital for a second opinion. Options being explored tomorrow by the team are Cinncinnati, Boston, Philadelphia, and Columbus (evidently one of the best motility experts in the country is there). We greatly appreciate your continued prayers for Keegan, specifically for a better night with restful sleep, lessened pain for Keegan, and guidance and wisdom in seeking this referral. Thank you!

Monday, February 23, 2009

Home Again

We made it home early this evening. I can only remember once that we weren't discharged in rush hour traffic. We'll be so happy when Keegan can be admitted at the Legacy campus of Children's - a short tenth of a mile or so from our house! One interesting note I figured this afternoon, Keegan has now officially spent 1/3 of his life in the hospital. Please pray that this is the end to his chronic hospital stays for awhile and that we are on the road to making life more livable...AT HOME...for our Bug. Thank you!

Waiting

Keegan didn't have a great night. Lots of air and excess coming from his tube, but he did NOT throw up this morning. He acted like he was going to but managed to keep it in. The resident was in the room when he started retching, yelling "keep it in, buddy! Keep it in!" Things I never thought I'd hear!

We're packed and ready to go. A little premature, I'm sure. I hope we didn't jinx it. Of course, the details are always what keep us here. Getting Keegan home takes an act of Congress with two home healthcare companies, meds that can only be filled by one pharmacy, which doctors want follow-ups when, etc. Then inevitably one doctor comes in with a "well, we're concerned about" speech every time on the day we want to go home. Always makes me wonder why they weren't concerned about it before now. Anyway, it will more than likely be rush hour traffic and with a feeding due (of course, we don't have our home pumps here) when they are ready to send us off.

Like I said in previous posts, we don't have that terribly elusive "answer" for Keegan, but we feel a little bit more comfortable going home now that we may have a better approach once we're there. We'll likely get at least one second opinion locally, and we may have to go elsewhere to find a doctor that follows a more proactive approach to protecting Keegan's liver from the TPN and lipids.

Your prayers are amazing! Keegan was at the brink of violating the "no-vomiting-and-he-can-go-home" rule, and I just know that it was the fervent prayers of our family and friends that kept him in line. We appreciate you continuing to pray that this new medication will stop the vomiting and allow us to work harder on letting Keegan's gut adapt and heal. Thank you also for all of your birthday well wishes - having Keegan go home is the best birthday present I could ask for!

Sunday, February 22, 2009

Update

Sorry for the delay in posting. Things can get crazy quickly at the hospital. Keegan's doing well - same ol', same ol'. We moved down to the GI floor on Thursday evening, much to Keegan's chagrin. He likes all the nurses down here for sure, but he doesn't seem to like the location very much. Our room was hand-picked by the GI charge nurse to put him right in front of the fish tank that he loved to look at last time. However, this go-round he seems bound and determined to escape. If we walk out of the room to go see the fish, he keeps going - right on out of the unit and doesn't want to turn back around! It's pretty funny. He's getting better at walking while holding our hands. Hopefully, he'll get it figured out once we're home.

Friday morning was very, very rough. We had been waiting on having a test called a gastric emptying scan. It requires mixing a radioactive isotope into Keegan's feed, and then looking with an x-ray to see how fast the isotope moves through his system. Evidently, the one plant in the entire world that produces these isotopes was temporarily shut down, resulting in a worldwide shortage. The doctors didn't deem Keegan emergent enough to use up some of the isotope, so they ordered yet another "upper GI series" set of xrays. This is where they put barium contrast down Keegan's feeding tube and watch it move through his system with x-ray. For kids Keegan's age, they strap them to a board to keep him from moving, which he of couse hates. It was ordered to make sure Keegan didn't have an obstruction in his intestines that caused the dark vomiting. This time it confirmed that Keegan's ability to empty food properly out of his stomach is severely impaired. We pushed the barium, and it sat and sat and sat in his stomach. The radiologist turned him every which way from Sunday on that board, and Keegan was screaming up a storm - both of which should have helped him empty the contrast into his small bowel. We sat there for what seemed like forever, and I was about to say enough when the radiologist suggested sinking a second feeding tube down his nose to at least get some contrast in his small bowel to check for obstructions. Well, that pushed some out of his stomach into his small bowel, and the rest he threw up. Not fun. Needless to say, we don't need the gastric emptying scan any more!

After the stressful test, Keegan was exhausted, irritable, and was in some pain, so we gave him some tylenol and let him sleep. The attending this week is the chief of the GI department. He read through my 6-page medical history of Keegan, spent quite a bit of time talking to us, and wanted to try a new medication that might help stem the vomitting and hopefully also help Keegan's tummy process better. It's actually an antihistamine (allergy med), but it has been used effectively to treat what's called "abdominal migraines" or "cyclical vomiting". He doesn't think Keegan actually has either of this syndromes, but some of his symptoms are similiar. He's had 3 doses of the medication so far, threw up the first morning (Saturday) but not this morning (Sunday). It will take some time to see if the med will work. This is NOT the ultimate answer for Keegan. It does not explain his diarrhea, his inability to absorb and process nutrients, etc. However, we believe if we can stop the vomitting and help his tummy actually "let go" of his food properly, especially when he's asleep, we may have a clearer picture of the remaining symptoms.

We still think that the most likely explanation of Keegan's problem is that he has underdeveloped intestines stemming from problems associated with his heart defect. If we can help him stop vomitting with this one medication, we can focus on how best to help him deal with everything else. The plan for this hospital stay is that IF Keegan does not throw up tomorrow (Monday), we can work on getting things in order to go home. YEAH!! So, please, please pray that Keegan does well overnight and does not throw up tomorrow!!!

One last good piece of news from this week, we re-ran labs today to see if Keegan was able to produce any antibodies to the immunization boosters we gave him in January, and he did!! Another YEAH for Keegan! It's one more good thing, but immunology is still going to follow him. There are some other concerning things in his labs recently, but they are going to watch them and wait for now.

Again, we are so very thankful for your prayers for Keegan. We are so tired in our search for healing and help for our precious Bug, but we have renewed hope in recent developments. We have prayed to see improvement without having to travel with Keegan and expose him to new people and germs. Your support and prayers have kept us going through all this. We love to get your calls, texts, emails, and guestbook postings. We know that this has been tedious to y'all also, but we are so humbled by your faith and hope for Keegan. Thank you. More tomorrow!

Show me your ways, O Lord, teach me your paths; guide me in your truths and teach me, for you are God, my Savior, and my hope is in you all day long. Psalm 25:4-5

Wednesday, February 18, 2009

Update

Keegan's doing ok tonight after an iffy day. He didn't sleep great last night with lots of air and some distension of his tummy, but since he had no feeds after 5pm, he did not throw up this morning. (Yeah!) The good thing that tells us is that if we don't feed him at night/overnight, he won't throw up. The bad thing is that he needs the calories and formula to gain weight, and he can't take that much during the day. Today he was just generally ornery and uncomfortable most of the time that he was awake. He slept on and off for a lot of the day. He had been taking one nap a day for over a week, but today he took 4. He also had several of his "pain episodes", with an especially bad one this evening around 6pm (sorry you had to hear that one on the phone, Chelle). Gray thought it was the worst he'd had since he had the hives in reaction to his meds back in October. It absolutely kills me to see my baby in pain and not be able to help him or know where the pain is or why it hurts. Please pray that these are lessened tonight, so that both Keegan and Daddy get some sleep.

We've suspected for months that Keegan's stomach "falls asleep" when he's sleeping, but we're more certain of that now. We also suspect that he sometimes cannot even process his own bile secretions (hence the nasty color show we saw yesterday morning). Today, we gave him half his normal formula rates, and we've played around with his feeding schedule to have them finish earlier. We'll see if that helps. Fingers crossed. Tomorrow, we are scheduled for a gastric emptying scan to try to confirm these ideas. The problem will be scheduling it at a time to best simulate his overnight problems, but we'll just have to do our best. Keegan is also scheduled to have a series of xrays he's had before called an "upper GI series with small-bowel follow-through". This is to make sure the funky colored throw up and Keegan's recent pain and excessive air build-up are not related to an obstruction or abcess, perhaps a complication from his last surgery.

And now the glimmer of hope!!! We'll only call it a glimmer for now, but it's the best lead we've had in months. BIG thank yous go out to Dr. G and Dr. Albert in advance! Unfortunately, it's a "diagnosis of elimination" or an educated guess of what has happened. There's no way to prove our theory except by elimination of other possibilities and the nature of Keegan's symptoms. It makes a lot more sense than any of the other diseases or disorders we've tried to pin on Keegan in the last few months. Essentially, we're thinking Keegan's intestines may have underdeveloped due to the stress of his heart condition in utero. I don't want to go into a lot of detail just yet until we have more information. Again, it wouldn't be curable, but with a better working idea of what's happening, we can better tailor his treatment and management. More importantly, it would give us some peace of mind that we're not biding our time waiting on an elusive diagnosis that would never come. Or as one of the GI doctors said today, giving Keegan more and more scary diagnoses just to encompass his symptoms.

Sounds like we'll be moving down to the GI floor tomorrow or at least by the end of the week. This stay will likely be at least through next week, as the doctors have already used the phrase "over the weekend". (Happy birthday to me. Yeah.) Thank you for your prayers for Keegan and our entire family. We are so tired of the back and forth between the hospital and home. We truly hope this will be the end of our searching and the beginnings of a better life for Keegan...and all of us.

Tuesday, February 17, 2009

Back at Children's - PART 7!!

And Keegan's back at Children's yet again. He made it 6 days this time. It's a GI admittance, but we are luckily on the cardiac floor. Our primary GI doctor has been working on getting us admitted since we called him this morning at 7:30am, but we didn't get the call that a room was ready until 6pm. Our transplant doctor said she almost had to promise her first-born to get the last bed on the 8th floor.

As we posted before, Keegan continuously throws up overnight and in the morning when we feed him. He was getting increasingly uncomfortable at night, and we were having to drain bile out of his g-tube several times a night in addition to the vomitting. It was problematic, but we were willing to work it out at home. Yesterday, our feeding pump broke at 1pm, and we didn't get a replacement pump from the home healthcare company until 8pm. Then the one they sent didn't work either. So, Keegan didn't have much of anything but water and a bit of rice cereal yesterday. Still, he had discomfort, air in his tummy, and quite a bit of back-up in his tube overnight. This morning, the color of his morning episode of throwing up was very concerning, as was the color and consistency of his diarrhea. Keegan would not even sit up. He was lethargic and uncomfortable for several hours. Eventually, he started acting like himself again, and he did well during the day, apart from an unusually long nap.

We called our GI doc first thing in the morning, and he said there were a few more tests we could run to figure out the vomitting. It just took us all day to get here. Luckily, we were able to sit home instead of in the ER. We are praying fervently that this admittance will be the charm for finding an overarching diagnosis for Keegan. Maybe we won't have to travel to find it afterall. Thank you for keeping Keegan lifted up in prayer once again. We would be nowhere without yur prayers.

Sunday, February 15, 2009

Update

We hope everyone had a happy Valentine's Day yesterday. We enjoyed being home, and Gray and I even got to sneak away for two hours to go see a movie yesterday afternoon thanks to Big Daddy and Aunt Alex. Thanks so much for that...it was nice to feel normal again for the afternoon.

Keegan is doing about the same. His diarrhea is the same as always. He's not handling the last feed of the day well, if at all, but we're going to talk to his doctor this week about what we might be able to do to help on that end. It just seems his tummy can't handle the g-tube feeds at night, no matter what we do. Keegan's been really enjoying his several hours of freedom from the IV pole lately. We've kept his IV nutrition running overnight, and with the several shorter feeds rather than continuous formula feeds, he is completely free to be a normal toddler for 2 hours morning and afternoon and a little in the evening too. We are getting such a kick watching him getting closer to walking. Keegan is quite inventive on the items in the house he's been using as walkers! We're still offering him rice cereal with a tiny touch of applesauce for flavor once a day. He only has 6 or so bites, but we are very thankful that he seems to tolerate that small amount of real food without an increase in his other symptoms.

We will take him for labs on Wednesday, and his follow-up with the GI doctor is currently scheduled for Friday. We have made contact with two other hospitals, but this process is probably going to take longer than I would have hoped. We'll keep calling and keep working on it diligently, and of course, we will keep you updated on our search. In the meantime, we posted some pictures and 2 new videos, so be sure to check them out. Especially the video entitled "I like to MOVE IT!" to see Keegan's rockin' dance moves!

I missed the opportunity yesterday, but beter late than never. Yesterday was a very special day for us besides being Valentine's. February 14 is NATIONAL DONOR DAY - a day to give the gift of life! If you haven't yet, please take the time to consider becoming an organ donor. Consider the following:

•Almost 95,000 people are in need of an organ for transplant.
•Approximately 35,000 children and adults in our country have life-threatening blood diseases that could be treated by a marrow/blood stem cell or cord blood transplant.
•Every two seconds someone in America needs blood, more than 39,000 units each day, according to the American Red Cross.
You can do several things to let others know of your wish to be an organ donor. Start by giving blood or registering as a bone marrow/stem cell donor. FIll out an organ and tissue donation card, register in your state's Donor Registry, and most importantly, make sure your family understands your commitment to donation! CLICK HERE to find out more information about organ and tissue donation in your state!

February 14 is also NATIONAL CONGENITAL HEART DISEASE AWARENESS DAY! Congenital heart defects, including Keegan's defect called Tetralogy of Fallot, occur in approximately 40,000 babies in the US each year and are the most common type of birth defects worldwide. Be aware, and pledge support. With early detection, many lives, just like Keegan's, can be saved!

Lastly, I'd like to ask for your prayers for some very special people. The first is for a life-long friend of ours, Delaney, and her husband, Kevin, who are going through a very, very difficult time right now. Please pray that they are able to find comfort and healing in our Father, their family, and friends at this time. Second, please keep our friend, Carter, in your prayers. He is a fellow transplant who is battling RSV right now. Hopefully, he'll get some good vibes from being in our old room on the GI floor and will be able to get well quickly. Thank you SO much for helping us to keep these wonderful people lifted up in prayer.

Thursday, February 12, 2009

HOME

Just a quick post to let y'all know Keegan was discharged late last night. He's doing ok so far. I will update again later with more info. We are still working on getting a second opinion, so please continue to pray that we will find someone interested in Keegan's case. Thank you so much for getting us through the last month.


Update: Finally got some photos and 2 NEW VIDEOS posted. Be sure to check them out here.

Tuesday, February 10, 2009

Update

Brief update tonight. I've been trying to finish up Keegan's medical summary to be able to provide to referring hospitals. It's taking quite a bit more time than I thought it would. For the record, I was wrong about the number of surgical procedures Keegan's had in the last 16 months - 24 total requiring general anesthesia. Way too many in my opinion.

We have been playing with Keegan's feeds the last few days in a desperate attempt to stop his vomitting. Today, we convinced the doctors to let us discontinue his nighttime feeds and add another 2-hour feed. That resulted in an overall decrease in his formula volume, but if we can stop the vomitting, we can hopefully make better progress in condensing his feeds to 1 hour each and increasing the volume and calories. The urine test they ran this morning showed that Keegan was a little "dry", which may explain some of his consistently elevated kidney function numbers. We've increased the volume of his TPN, left it at 12 hours a day, and are crossing our fingers that Keegan doesn't continue to lose weight as we work this out.

The remaining stool tests will take several days to finish. We have put Keegan back on GCSF three times a week because his hematologist was unhappy with Keegan's ANC dropping under 300 in between doses. We still don't have the final liver biopsy results. The pathologist had a death in her family and hasn't been able to sign off on the final results...or non-results as it were. We put the wheels in motion to bring Keegan home tomorrow as we get our referrals in order. That's about all there is to say for now. Our prayer request is now to find a hospital or doctor that will have an answer for Keegan.

One fun note, Keegan had his first real haircut today! Over the summer, my hairdresser, Holly, clipped the curl on the back of his neck, but he didn't have enough hair for an actual cut until after the cyclosporine caused his hair to grow crazy fast and thick. He looks SO cute with his "big boy" haircut. I'll post pictures as soon as I can. THANK YOU, HOLLY!

We'll update tomorrow with more info. Have a good night.

Monday, February 9, 2009

Update

How many times lately have I started a blog entry with the word "unfortunately"? I don't know, but let's add another one. Unfortunately, we're not going to get an answer for Keegan from his liver biopsy. I'm so angry with the pathology department here that steam is probably about to shoot out of my ears. We've waited 12 days since his biopsy, and the most we got was that they really don't know why the cells in his liver are swollen with fluid. For the first 5 days after the biopsy, the GI doctors told us this fluid in his hepatocytes was evidence Keegan has a metabolic disorder, which would likely encompass a lot of his symptoms. We were somewhat relieved by that news, and we were waiting on further testing to help us determine which of about 50 disorders it was. We were told the tissue was being prepared to look at with the electron microscope, but now we have come to find out that was never done. Last time I spoke with the GI doctor around 2:30pm, there still wasn't a final report in the computer, but from his conversation with the pathologist, they were likely going to blame the liver abnormalities to his immunosuppression medications. Interesting, since yesterday our transplant surgeon said she's never heard of such a thing. So, to sum things up, we are still without an answer for Keegan.

Our primary GI is actually the attending this week. He has ordered a number of additional stool and urine studies to make sure he covers everything he can think of before sending us home. We've been told that Children's will help with getting Keegan to Boston (or anywhere else) when and if they will see us, so it looks like we'll be going home around Friday, barring any big problems. It seems we're going to have to do most of the second-opinion-footwork ourselves, and we might as well be at home to do that.

We've switched Keegan to larger feeds 3 times a day and a smaller amount overnight to give him more time disconnected from his IV pole. Today, we condensed his TPN to 12 hours. Our GI doctors said today though that unless we figure out why Keegan's not absorbing enough of his formula to gain weight, then we won't be able to get him off of the TPN completely. The unsaid result of that happens to be that unless we get him off of TPN, his liver will continue to take a hit. We want to make sure we don't do irreversible damage to his liver.

That's about all I have the energy to post at this point. I'm so obscenely frustrated that I can't even finish putting my thoughts into words at this point. I had planned to just start calling doctors at other hospitals today, just to find anyone else to take a fresh look at Keegan's case. However, we need to finish these last few labs that the GI doc wants before we start pestering so that we have a complete picture to present. Two of the GI docs here claim they are emailing doctors at different hospitals already, but we'll see. Other than that, Keegan is still the same goofball he always is, and he's really enjoying his few hours of freedom each day. We're hoping he'll have more incentive to start walking if he is free of his IV pole. Oh, and he's done ok with the rice cereal the last few days; not as much as the first day, but he is still willing to give it a try once a day.

Thank you for your continued prayers for Keegan's healing. They are needed so much more now than ever as we face a new phase of uncertainty. Thanks again, and have a great week.

Friday, February 6, 2009

Update

We are STILL waiting on the results from Keegan's liver biopsy. Yesterday, they said it would be more like next Monday before they have any more information. We asked our transplant surgeon to go throw some weight around. She said she would but explained that the electron microscope can take several days and that it was the best way they could possibly look at things. We are pushing to get everything in order for a referral for Children's Hospital of Boston just in case we need it next week. There are some specialists there that might be interested in helping Keegan, but this is a bad time of year to need a bed at ne of the busiest pediatric hospitals in the country. We'd prefer not to have to go to Boston in February (brrr!), but we'll go to the ends of the earth to find answers for Keegan.

Keegan had a bad night after my last post. He has had some stomach pain and distention the last few days, although his diarrhea remains unchanged. I should have known better than to agree to push his feeds on Wednesday. We went from 12ml to 15ml in one day, and Keegan paid the price that night, tossing his cookies for almost an hour. Needless to say, we're back to 2ml increases every 2 days. Keegan has shown us time and time and time again to go slowly. We just get excited and try to push him too hard. On that front, we've made a big step today (hopefully not too big for Keegan)...he had 1 full ounce of rice cereal today!!! YEAH!! I cannot tell you how nervous I was to try it. Keegan has not taken food off of a spoon since July, no solid food at all since September, and nothing by mouth except water since October. Speech has been diligently working with him the last few months to keep his mouth muscles working and reduce his oral aversion. We were so happy when he started taking water off of a spoon in late November. I give a lot of credit to the speech therapist for enabling such a smooth transition to the rice cereal today. We won't try more than an ounce a day for at least a week. Please pray with us that Keegan will tolerate the rice cereal without too much discomfort.

Unless there are any big changes or news, we probably won't update again until Monday. We're hoping for a very quiet weekend here. No more labs or shots until Monday either. Keegan is tolerating his twice-weekly GCSF ok, only dropping his ANC to around 300 or so between injections. Hem/onc said it will take a few months for him to stabilize on this dose, but they don't want to give him too much either. With the blood he got last week and weekly epogen injections, we're hoping to keep his counts stable for another 5 weeks at least. We're still working on some theories on the immunology side, but those labs take awhile. That's about it for now.

I know that this waiting for answers has been just as hard for our family and friends as it has been for us. I wish I could put into words how humbled and appreciaive we are that each of you has remained so faithful and devoted to Keegan and our family. Your prayers, your thoughts, your stories of how Keegan's life has touched others...they mean more than we ever could have thought possible. What an incredible son we have who has strengthened the relationships and faith of so many!

Thank you so much!

Wednesday, February 4, 2009

Update

I can't really entitle this entry "update", since I don't really have much to update about tonight. We're STILL waiting on Keegan's liver biopsy results. We'll keep praying for them for tomorrow, I suppose. We've advanced his feeds to 15ml/hr this afternoon, and he's doing ok with it. He still stops processing, and we have to help him out with the relief bag and venting his tube. At least (knock on wood) he's not throwing up now. His tube site is looking pretty good, 7 more weeks to getting the tube replaced with a button. We're even going to try a little rice cereal during his speech therapy session tomorrow. Don't know if Keegan's going to agree with that attempt, but we'll see! We're down to Monday/Thursday labs for the most part, and by tomorrow, we should have a good idea if the "GCSF every three days" plan is working. Also, Keegan's been off the "big gun" antibiotics for his staph infection for a week now, and we've seen no indicators that the infection is still there. The only other news is that for 2 days now he's only taken one big nap a day. He wasn't too thrilled with the idea at first, but when he started fighting his already late bedtime, we thought it was time to try. He's getting closer to "normal baby" stuff all the time.

We'll certainly let you know when the biopsy results are in. Thank you for your continued support. I don't want to get into what we think the biopsy may show quite yet (confusing stuff until we know for sure), but please continue to pray for a result that encompasses many of Keegan's symptoms. This would allow us to start new treatments and hopefully be home very soon. We place our trust in the Lord, and we will follow the path where He leads us, even if it's not home yet. Thank you again, and we'll update again soon. Have a great end to your work week!

Monday, February 2, 2009

UPdate

Unfortunately, I don't have the update I wanted to have for tonight. We're still waiting on results from Keegan's liver biopsy. Keegan is doing alright. He had a pretty rough night Saturday with lots of air in his bowels as they "woke up" from his surgery last week. His diarrhea is back in full force and already taking a toll on his bum. He's still in a good mood (when isn't he?), and we are thoroughly enjoying his smiles with clean cheeks! His g-tube site is looking pretty good, but we still have 7 weeks to go before it is replaced by his "button." Keegan's progressed from 10ml/hr pedialyte in his g-tube to half-strength formula and today to his normal 24kcal Neocate. He's still at 10ml/hr, but it will take us awhile to get back to 30ml since we will only progress by 1 or 2ml every day or so. Lastly, we seem to have found Keegan's "happy place" with his GCSF, and we've been able to keep his ANC and white counts within the normal range for a week now. His last transfusion is holding his red counts pretty steady, and his platelets had even come back up a little bit. I honestly thought they had handed me the wrong kid's labs today when they looked so much more normal!

We were hoping to have more info from his liver biopsy today, but the pathologist wants to look at the tissue under the electron microscope now. We were told "mid-week" for results now. The liver biopsy is really the last thing we're technically waiting on, and of course, starting any further treatment that would follow from a diagnosis. We'll go home on whatever amount of TPN we're on when the liver issues are resolved. The first impression given by us up until today was that the biopsy would give us answers, but it would take several more days to pinpoint it. We didn't feel that we got that feeling from the doctors today. If the liver biopsy ends up not giving us any answers in the end, we'll have to reevaluate our need to get a second opinion elsewhere.

And now for the completely unrelated ending to the post...

HAVE YOU READ "THE SHACK" by William P. Young YET??? One of our CVICU nurses recommended it months ago, and I just got around to reading it. Amazing. If you feel lost in your relationship with God, start with this book!