Friday, August 29, 2008

Update

Keegan is showing small improvements every day. His energy seems to have returned almost to normal. No fever, and his blood pressure is looking better. He still has a runny nose and the black tongue. He is eating slightly better, but we think whatever is affecting his tongue and mouth may make things taste funny. He still looks a little pale and drawn at times, but it is definitely getting better. The best thing is that his smile and laugh are definitely back. That makes Gray and I feel 100% better about everything.

The tests run by Infectious Disease take at least 5 days, so we probably won't hear good or bad from those until Monday. We are still planning to see the pediatrician and have bloodwork done on Wednesday. We are simply praying for continued improvement in Keegan's health so that he is completely ready for his biopsy next month. Thank you for your prayers this past week. We will update as we know more.

Wednesday, August 27, 2008

Home

Keegan was discharged late this afternoon, and we've been home since about 3:30pm. His labs were coming back together, so with a few med changes, they felt it was ok to send us home. The ID tests will take a few more days, so there didn't seem to be much reason to wait that out at the hospital. His blood pressure has come back down a bit, and he hasn't had a fever in over 24 hours.

When we got home, his color seemed to instantly improve. He was very excited to see Rusty, and he crawled around the house a bit. After his nap though, things weren't so hot. His color seemed zapped again, and he was extremely irritable and clingy. He didn't even respond when Big Daddy came to see him. He had a nosebleed for the first time, and his temp went back up past 99 again before bed. He is sleeping now, and we are hoping that a good night's sleep in his own crib will make all the difference.

We are still hoping the tests that Infectious Disease ran will tell us something in the coming days, but we may never know what caused Keegan to be so sick. He will be seen by the pediatrician next week and will have more blood draws on Wednesday. We are stopping antibiotics tomorrow. His nose is still drippy. and he still has a slight rash on his forehead and arms. He has had leads for the heart monitors stuck to his back for the last three days, so his back is a bit irritated. Each hand, foot, and inner elbow are bruised from the many blood draws. Please keep praying that Keegan will continue to improve so that he can have his biopsy on the 23rd.

Thank you also for your prayers for our friend who had her stem-cell transplant today. Her dad came to see us at the hospital today and said the transplant was very successful. Also, please continue to pray for Tucker and Wesley. Tucker needs to be well to have the best shot at a successful heart surgery, and Wesley is trying to gain weight and breathe well all the time on his own. Thanks again for remembering us all in your prayers. We hope everyone else is having a wonderful week, and we'll keep updating on Keegan's progress.

Tuesday, August 26, 2008

Improving!

We have had an overall good day. I spent the night with Keegan while Maddie went back to the house to rest. Keegan slept better last night then he has since he has been sick. He would stir but never really wake up. I was on pins and needles most of the time. I didn't want him to roll on a sensor or lay in an awkward position. Well, it was all for not because he pretty much stayed on his side. We had some slightly high blood pressure and no fever over night.



Once the day shift came back we stared our testing. The ID division called for a number of tests which included a blood draw, nose swab, throat swab, and "Bum" swab. We are still waiting on the cultures for that. I hope we hear something tomorrow. Today our blood pressure is much lower and we have a normal to slightly below normal temperature.



We were visited by the cardiac transplant staff and the decision was made to take Keegan off the IV antibiotic and place him on an oral one. The thought process is that we wanted to make sure we are ok with that for at least 24 hours here at the hospital before we are sent home. We were on similar oral meds when we were sent home and his fever started spiking again.



There is no word yet on what the virus maybe or the origin of the “black tongue.” Keegan’s color has started to return his personality is starting to return to normal. If he continues on this tract there is discussion that we may be released sometime late tomorrow. Thank you again for your thoughts and prayers… They are certainly helpful.



Thanks,

Gray

Monday, August 25, 2008

Back at Children's - Part II

Posting again from the 8th floor at CMC. We were released from the 23 hour observation period Saturday afternoon. Keegan did well Saturday until about midnight when his fever spiked again. He had a night of ups and downs, but by 7am Sunday, he was a bit more active and alert. Around 9:30am Sunday morning, his fever spiked up to 102 and never came below 100. Shortly after the fever increased, he became extremely lethargic and difficult to rouse. We could only keep him awake for about 30 minutes at a time. When his fever hit 103, the transplant doctor on call asked us to bring Keeg to the ER downtown. We were in the ER from about 4pm to 10pm, where his fever was again uncontrollable. They decided to admit him at that point.

The doctors are fairly confident this is being caused by a virus, but Keegan is on an intravenous antibiotic to provide a "safety net" for his heart. They have run a million blood tests because some of his numbers are not consistent with a virus, but he hasn't as of yet responded to the antibiotics. The transplant team is researching all the "known" viruses to see what they can find. He developed black patches on his tongue starting Thursday, and the infectious disease doctors are looking into that also. Keegan will remain in the hospital until he is clear of fever and generally back to his normal self.

This morning so far his temp has remained below 100, but he has still been lethargic. At the moment, he has been playing on his own for the first time for about 10 minutes. The ups and downs have certainly made Gray and I feel a bit crazy. We are hoping to remain fever free for the day right now, and then hopefully things will improve from there.

Please continue to keep our Bug in your prayers. As Dr. Fixler said this morning, the best thing that could happen now would be that he will get better, and we will never know what caused all this. Thanks as always for your thoughts and prayers.

Update

Keegan's fever never went above 100.5 today, which was a good start. He was a bit more active throughout the day, but he is not eating any solids. So far, he has taken enough formula/milk to not need IV fluids, but it has been close. Keegan was seen by the Infectious Disease team today. They are also concerned about his tongue and some rashes he has had since the fevers first spiked. They still believe it is viral, and they are ordering several more tests to be run tomorrow. We have officially determined that his ears are not the source of infection, nor the source of the fever. At least they've ruled one thing out.

So far, his heart seems to be taking all of this alright. He had an echo today, but we haven't heard what the results of that were yet. However, his bloodwork has been all over the board. His immune suppressant levels shot through the roof today, which is unusual and kind of shocked everyone. A lot of his numbers just don't add up right now. As always, we will let you know as we know more. I think the biggest problem right now is that we just don't know exactly what's wrong. We appreciate your prayers and ask that you continue to keep Keegan lifted up. We are confident God will not foresake what He fought so hard to save. We will walk through the valleys knowing that He is with Keegan every step of the way.

Saturday, August 23, 2008

CMC Update

Keegan slept a bit last night and looks a bit better this morning. No fever spikes since midnight last night. His bloodwork this morning looked a little troublesome, so we're waiting to learn a bit more. Dr. G just stopped by, and she thought that they may send us home this evening on antibiotics. However, the cardiologist on call said they may keep us overnight again just to watch his numbers a bit more. We'll post again when we learn more. Thank you again for all your prayers.

Home

We are home now. Keegan was still running a slight fever when we left the hospital, but it may take up to 48 hours for everything to kick in. He certainly seemed more like himself by the end of the day, even though you can tell he still doesn't feel 100%. His temp was closer to normal when he went to sleep tonight. Please pray for a night of good rest for Keegan. That is the one thing we know he needs most of all right now. Thanks again!

Going Home

Ok, so we're going to be sent home on a 7-10 day course of antibiotics. If he continues to improve, he may not have another blood draw next week. We're not sure what time we'll be discharged, but I would guess it will be late afternoon before we leave. As always, we'll update again soon, and thank you, thank you, thank you, thank you for your prayers. We are in awe of how God continues to watch over Keegan and lift him up. Your prayers are a big part of that! Dr. Stromberg said today that Keegan continues to make them say, "well, huh?" and through them for a loop. Guess he just wants to keep them on their toes! Time for a bottle! More later.

Friday, August 22, 2008

Back at Children's

We're updating tonight from the 8th floor of Children's. As we posted last, Keegan had been doing much better. Yesterday evening, he spiked a fever and became inconsolable. We took him back to the urgent care facility, and it appeared the ear infection had spread to his other ear despite being on antiobiotics. We changed meds and went home. Overnight, his fever spiked to 103.5, and this morning the transplant team sent us to the newly opened Children's ER at Legacy across the street from our house. Evidently, it opened Monday, but no one really knew! We were one of the first patients in the ER. Keegan had two fever spikes while we were there, and they made the decision to admit him for a 23 hour observation period at Children's downtown. So, here we are, still running a fever. He's had a shot of a pretty powerful antibiotic, and we're just trying to keep him comfortable and hydrated.

Needless to say, he is not a happy camper. He'll be awake for about an hour or so, and then sleep for another hour or so. He's gone from not caring about any procedure here to crying pretty much whenever a nurse or doctor enters the room. We're hoping his fever will come down and that we'll be able to go home tomorrow. We will certainly update tomorrow as we know more.

As always, please, please, please keep praying for Keegan. A few prayer requests for friends and family other than Keegan:

1. Gray's cousin, Wendy, had her son, Wesley, 8 weeks early yesterday at 4 lbs 10 oz. He is currently breathing on his own, but he is expected to be in the NICU for awhile. Please pray that he is healthy and gains weight, so that he can go home to be with his mom and dad.

2. Our friend, Tucker, is going to have his third open heart surgery next Tuesday. His second conduit has again hardened, and Tucker is having very low oxygen saturations. He was the ER here at CMC earlier also due to a fever. Please pray that he is well enough to have his surgery and that it is successful this time.

3. Another friend, Alyson, is having a stem-cell transplant next week. She has lymphoma and will be having a transplant of her own stem cells. She has just finished her high dose radiation and chemo to prepare for the transplant. Please pray that her transplant will be successful and that she will be feeling better soon.

Thanks for checking on us, and we'll be updating again soon.

Tuesday, August 19, 2008

Update

Just wanted to update on how Keegan is faring with his cold and ear infection. He started acting more like himself yesterday, although he still has a icky, runny nose. It's so hard to see your child screaming and writhing in pain. It makes me so glad that he went through all the heart stuff when he was young enough to not know the difference. Everyone keeps saying Keegan was lucky to make it 11 months without an ear infection, but I'd just as soon have him never have to experience it! We went to the pediatrician yesterday, and she said his ear didn't look that bad now. That seems to mean the antibiotics are working, so he should be able to recover on his own at home. Thank you for your prayers, and we will continue to keep you updated on his progress.

The reason we had scheduled to see the pediatrician was to discuss Keegan's weight/height. She was a bit concerned that he has had approximately 5oz of weight gain in 3 months, but she wants to give him some time to make that up on his own now that Keegan's off the steriods. We will go ahead and make the transition to whole cow's milk. We started that today in his bottles with half milk/half formula, and he really seemed to like it. We are also going to try to get Keegan to drink a can of Pediasure a day. He also seemed to like what we gave him of that tonight for dinner. We will check his weight again next month at the hospital. Please continue to pray that he gains weight and grows without more intervention.

Again, thank you so much for remembering Keegan in your prayers. We greatly appreciate it, and I promise I will get some pictures up soon!

Saturday, August 16, 2008

Ear Infection & Cold

Keegan hasn't been sleeping well for a few days, and yesterday evening he developed a runny nose. This afternoon when he took a turn for the worse we took him to the doctor, and he has his first cold and a pretty nasty ear infection in his right ear. He is on antibiotics, and as of right now, he does not need to be at the hospital. Please pray that his body fights this ear infection with the help of the antibiotics and that he is well again soon. As you know, Keegan has a suppressed immune system and fighting infection is much harder for his little body than for an otherwise normal baby.

We will update again soon with news as we have it. Thank you so much for your prayers. We've said it time and time again, but the power of prayer has shown to be Keegan's saving grace. Please pray that God will continue to lift Keegan up and keep him in good health.

Wednesday, August 13, 2008

Clinic Update

Clinic went well overall today. Keegan's EKG and xray looked great according to Dr. Barnes. His labs were pretty good. His prograf levels were still good, so no change there. His WBC was at the high end of their acceptable range for the second draw in a row, so we are restarting Cellcept. Start one, and stop two though! NO MORE STERIODS!!! Yeah!! Keegan was also on a reflux medication, called Prevacid, as a preventative because the steriod can cause esophogeal erosion. So, we'll stop both of those as of today. The good thing is that he may have a height growth spurt now, but steriods also tend to increase appetite. We obviously don't want him to stop eating any more than he already has.

Ok, so the not so great news. Keegan has only gained 0.2lbs (from 7.4 to 7.5 kilos, about 16.5lbs) in the last three months. He is still nowhere near being on the weight or height charts. Now, lest I get sneered at by some of you who say "but he doesn't look skinny." Yes, I know - he's not in the "failure to thrive" category, but it's still concerning to see 3 month old babies as big as Keegan. He is eating a little bit more. He is touching and putting more foods with different textures in his mouth, but he doesn't necessarily swallow them. We probably get one good meal every three days or so, and he isn't making up those lost calories in formula. We met with the dietician at the hospital today and decided to wait one more month to take action. Most US pediatricians recommend babies being off the bottle and formula at 1 year. The dietician and doctors today agreed that Keegan may need to stay on formula a little longer and increase the concentration back up a little more. We will meet with his pediatrician in the next few days to discuss this aspect more. As my mom noted today, I am much more concerned about this than the doctors seem to be, but he is my child, my Bug, my baby. He has been through so much with flying colors. I just want him to be as normal and healthy as he can possibly be. Prayers about his eating and weight gain would be much appreciated.

In other news, he is crawling at the speed of lightning now, but it's still his little peg-leg crawl. Poor thing has a nice little bruise from dragging that knee around the place. Now that he's more mobile, we have found him in some precarious positions, such as under the coffee table, under his exerciser, under the jumperoo, and trying to crawl into the open frontloader washing machine while I was sorting laundry. Although he has let go standing a few times and has tried to stand up on his own, he seems less interested in walking now that he knows he can get there faster crawling. This new ability interupted his sleep for a few weeks, plus I think he is at the beginning of making his 2-to-1 nap transition. He's doing a bit better on the sleep end now though. It really got to me for awhile because he has been such a rock-solid sleeper, just like his dad. He is a much happier camper with proper shut-eye too!

Can you believe that Keegan is 11 months old now??! Time flies, as they say. On September 23, we will have our next clinic visit and annual biopsy. After that, we are down to clinic every three months, labs/xray at Legacy every month, and echos probably only once a year!! The biopsy will be performed in the catheritaztion lab at Children's. We are scheduled to be the first cath of the day at 7:30am. They will use a cath (tube fitted with pinscers and a camera) through an artery in Keegan's neck to take pictures of and a tiny sample of his heart. This biopsy of his heart is the only true way to test for rejection. He will have one every year for the rest of his life. He has already had one the morning he got his heart. If you remember, the doctors didn't tell us there was a heart available for Keegan until they took pictures of his lungs in the cath lab. That day his lungs were "beautiful", so we are praying for another good outcome this time. All of his other tests will be performed while he is under anesthesia for the cath. The entire process takes about 12 hours. He should be able to go home at the end of the day, unless he needs to be hospitalized for rejection or any other conditions. We saw another transplant friend of ours today, 4 year old Hannah. She had her cath yesterday, and she was doing great. She kept tickling Keegan under his chin, saying "goochie, goochie, goo!" Hannah's hysterical. It was definitely reassuring to see her doing well and up and about after cath.

OK, I think you've had just about all the Keegan news that's fit to print at this point. Have you seen the pictures of Keegan's first haircut and trip to the library yet? Sneek a peek at the Bug here! I will post some new pictures soon, but this old laptop is having difficulty recognizing the camera tonight. Please keep Keegan in your prayers as you have all been so kind to do so far, specifically for his growth at this point. Prayers that our back-up laptop stays alive until we can afford a new one would be appreciated too! ;) Wouldn't want y'all to miss out on updates or pictures! We hope each of you are doing well and surviving the heat of the summer. You are each in our prayers of gratitude every single day! Take care, and thanks for checking on us.