We are out of the ICU...

...but we didn't get to start the radiation treatment today.

Due to some confusion about if he was supposed to have gotten water by mouth last night, he wasn't released to be anesthetized for the simulation.  By the time the situation was cleared up, he lost his slot to be able to do the procedure.

Needless to say, we were not pleased by this development, and neither was the radiation oncologist Doc M.  However, he is rescheduled for tomorrow.  Normally, one day doesn't necessarily make a difference, but since this tumor has been so aggressive, any delay further narrows our treatment window.

Doctor M stopped by to give us a bit more details on what her plan is. Her treatment is to have 10 sessions, one per day. The treatments would normally be Monday through Friday, with the weekends off, but because Alan is inpatient thanks to the tubes in his kidneys, they will give him the treatments seven days a week. The idea is to concentrate the treatment early to try to hit the tumor hard versus spreading it out.  Fractionation is the term used to describe the length of time the treatments are spread out over... more fractionation means a longer treatment time.  The main immediate side effect will be a mild sunburn-like discoloration on his skin.  There are concerns for more long term effects, but we can deal with that when the time comes.

Everyone is still concerned about the possibility of a colon blockage.  The kidneys and bladder have responded well in draining, giving some relief to Alan.  But, the x-ray we had today still shows the colon distended by the tumor (not unexpected).  Doc HJ's team has been analyzing the various scans, stopping by at one point, and have conferred with Doc M to decide if they need to operate first to clear the possible colon blockage.  As of right now, we are still pressing ahead with the radiation first... but Doc M has made clear that Doc HJ has priority if they need to relieve a more immediate problem of a true blockage.

Since Alan has only had clear liquids since Friday (most of which has gone up the NG tube anyway), they started him on TPN (Total Parenteral Nutrition), which needs to go the port on it's own. That meant they had to put an IV in Alan's hand for his medications while the nutrition went through his port - more poking and prodding.

We got to meet Doc H3 today when she came by to check in on Alan. Although her primary reason to see us was going on rounds, we took the opportunity to ask her a little about her trial that we hope Alan will qualify for.

Finally, because Alan's BP seems to have stabilized, we've moved back to the regular pediatric floor, back to watching SpongeBob on the TV and having cell phone service and food in the room.  Alan has been handling this like a trooper, though with the pain killers and the various hookups, he's been content to just watch TV and relax as much as he can.



Watching Sponge Bob Square Pants

Weekend in the ICU

It has been a very busy weekend. After a night on the pediatric floor, we headed off to Interventional Radiology on Saturday morning so they could put tubes in Alan's kidneys to relieve the pressure. The IR resident came to tell us about the nephrostomy - they would do an ultrasound to see how the kidneys were this morning and that would determine what tubes they would put in. The right kidney would definitely get a tube; the left one would get a tube if it was swollen as well. Otherwise, they would put a tube in the bladder to help it drain. Either way, Alan would be getting two tubes. They would be using the ultrasound to guide the needle and then stitch the tube to his skin, covering with a bandage. Then we found out that Alan would be going to ICU following the procedure, rather than the PACU or the pediatric floor. We were not expecting that, since the last time we dealt with Interventional Radiology we went to the PACU for recovery and then the pediatric floor for observation overnight. Between the possible bowel obstruction and his high blood pressure, the docs wanted Alan to be under closer monitoring. Luckily, since the pediatric floor wasn't full we didn't have to completely move everything out of our room.
In the waiting room, the resident came out to tell us that both kidneys were swollen, so Alan would be getting the tubes in his kidneys. This will divert all the urine away from the bladder, so hopefully we can remove the foley catheter soon. There was some discussion about doing a CT for Doc HJ, but since Alan had a bowel movement that morning, they decided to wait and see rather than give him another scan.

Since we had only anticipated being away for two nights, Harold went back to San Antonio to get Kevin settled for a longer stay with friends and pack more for the rest of us. Judy stayed with Alan in ICU, speaking with Doc HJ and Doc H2. Doc HJ talked about the possible obstruction. Since Alan was sipping water with no problem by Saturday night, she was hopeful that they could turn off the suction on his NG tube to see if things were moving again. They would take an x-ray to see how things looked.

Doc H2 was happy to see that we were able to manage Alan's pain. The Fentanyl via PCA that had worked so well for Alan after his last surgery wasn't doing much for him this time. By 2 am after consulting with the Pain Service, we switched Alan back to morphine. That seemed to do the trick and by Sunday morning his blood pressure was much better. When Doc H2 came to check on Alan she pressed him on the next step after radiation, since we can't expect any more from the radiation treatment than slowing the tumor's growth. He talked about some of the clinical trials that he has been looking at for Alan, including the one involving amino acids, which happens to be run by Doc H3 who was the attending pediatric oncologist this weekend.

Because there is no food and no cell phones allowed in the ICU we were hoping to move back to the pediatric floor on Sunday afternoon, but Alan's blood pressure continued to fluctuate. The ICU pediatrician wanted to hold Alan one more night, but if things continued to stabilize he saw no problem with us returning to the pediatric floor on Monday.

It has been an exhausting and frustrating whirlwind of a weekend, but the important thing is that Alan is comfortable right now and everyone is working on making sure he stays that way. We also want to take a moment to thank everyone who has rallied to support us over the last few days. The texts, payers, posts on our Facebook walls and on Alan's Angels, the gifts and help have been a much-needed practical, emotional, and spiritual boost. Thank you all, so much!

Christmas day escape

We started this Christmas morning in ICU. The ICU pediatrician gave Kevin special permission to come into ICU as long as he wore a mask, and he was working on getting us released to the Pediatric Floor. We emptied the stockings and opened some presents while we waited and the boys enjoyed their toys. The important thing was we were all together.

After a firm admonition from the Ortho Fellow for complete bed rest for Alan, we were finally released from the ICU. We got the word shortly before noon, but it took several hours to wrap up the charting, get his room on the Pedi Floor ready, and get Alan prepped. They removed the central line and accessed his port instead. The multitude of controllers and pumps have been whittled down to one controller with two modules - one for the IV fluids and the other for the PCA Fentanyl. His foley catheter was also removed.

After a nice nap and a lot of farewells (Alan was quite charming to all the ICU staff) we moved upstairs to the Pediatric Floor of the Children's Cancer Hospital - a hospital within MD Anderson. While we won't have the same intensive nursing and pediatrician attention (though they were comforting, Alan doesn't really need it any more), things will be quieter and a lot easier on all of us. The nice thing was that Auntie Joys and her family were able to join us this evening. Auntie, Uncle and cousins were glad to be able to see Alan and spend time with us. It was a wonderful way to wrap up Christmas!


Alan loves the alphabet!


He needed a mask, but Kevin got to see Alan for the first time in three weeks


Alan naps while waiting to move to the 9th floor


Playing with one of his Christmas presents in his new room


Kevin and his new airplanes

Still in the ICU

Alan had a good night. Doc L's resident came to take a look at Alan bright and early and took down the dressings on his leg. Which surprised Doc H's resident who came to look at Alan later in the morning because they were planning on doing that tomorrow. Ortho vs Plastics... but they both thought his leg looked good. However, Ortho wanted to keep Alan in the ICU one more night. We didn't get a chance to ask him if there was a specific concern, or if he just wanted to be conservative.

Plastics and Pedi Surgery were fine with it and the ICU pediatrician thought Alan was doing great, so we are quite frustrated. The ICU pediatrician gave us the go ahead to try any food we thought he would eat, so Alan got chicken noodle soup and ice cream for lunch. The broth was popular for a while but he wouldn't even try the noodles. He had a little of the ice cream, then he was done. He didn't touch the graham crackers that came with the soup. Of course, he's still getting a feed of 40 ml/hour through the ND tube, so he's not really hungry. Alan took care of that this afternoon by pulling out the tube. Hopefully, with a little time he'll get hungry and start eating. He did eat half a Baked Lay potato chip at dinner!

Alan is definitely getting cabin fever. We've been in the ICU for over two weeks now. He's wiggling a lot, which gets him out of position in his brace. There's not a lot we can do about that. It will be better when he's in the cast next week. We'll be opening some presents in the ICU tomorrow morning, and a good thing too. Auntie Joys reported that he was getting bored with what he had and was frustrated. We're praying that along with some new toys, he'll have some new scenery at the Pedi Floor instead of the ICU.


Mmmm, ice cream!

Busy afternoon

After this morning's surgery Alan showed no sign of wanting to nap, and good thing since it was a busy afternoon. Doc H2 came by to check on Alan's progress. He is still waiting on the pathology report on Alan's tumor. It is taking longer than normal, probably because they need time to de-calcify the tumor. Until then, we will be waiting to make any further treatment decisions. If and what kind of chemotherapy and/or radiation therapy will depend on confirming the pathology of the tumor and the margins achieved, in conjunction with Alan's treatment history. If radiation is necessary, he is likely a candidate for Proton Therapy. Many of our little friends at the RMHH are going through Proton Therapy and it would be a wonderful option if we have to look at radiation.

The ICU OT came by to work with Alan. And by "work" we mean "play". She came with some stickers and paper, and after a little encouragement, Alan was peeling dots and rectangles and decorating the paper. She was trying to get him to cover a dot she had drawn on the paper, but he wanted to make a line of dots first - so typical of Alan! We also worked on stacking, nesting, and banging his bath cups. We wanted Alan to be lifting his arms, especially his right arm, so we held the stickers, papers and cups up and away so he would have to reach. He was having fun!

Then Santa came on a trip through the ICU! The ICU staff had come in with Santa with toys and a balloon with lots of curling ribbon, just the way Alan likes it! Ripping the wrapping paper off the presents proved to be too much for him, especially after all the therapy work. He was able to pull the balloon down to play with the ribbons though, especially when we attached a sticker it!

Then Auntie Joys came by to kiss toes and spend the night. She had arrived in Houston this afternoon with her whole family and big brother Kevin. If we can make it out of the ICU for Christmas, there will be lots of family!

The ICU pediatrician decided that Alan can start trying some clear liquids, so we offered him apple juice, chicken broth, and Popsicles. The juice was a hit and the broth was well received. Alan didn't care for the Popsicle though - surprising since he usually loves them. It's a good start though, and a baby step towards getting that ND tube out. Alan may be thinking the same thing, because he's been pulling at it. For now though, it has to stay put.


Alan ripping his present open


Ribbons! And you can see his sticker work too!

Surgery Part Two

After a quiet evening last night, waking at 2 AM for about an hour, Alan was up at 6:30 AM. He was NPO because of the surgery, so his feeding tube was cut off at midnight. He was very cranky this morning because we couldn't give him the water he asked for. He was wheeled out of ICU at 7 AM, where a big crowd had gathered to send him off. We've been here in the ICU for two weeks, during which Alan has charmed a lot of people (seeing him sleep with his hands tucked behind his head gets a lot of laughs, and apparently a similar picture of him in his ClinicStation profile usually draws a crowd around the nursing station PC).

The surgery started at 7:30 AM and by 8:10 AM, Doc HJ has already come out to brief us on her part of the surgery. The stent was removed very easily - apparently sometimes the stent can adhere while it's healing but that was not the case with Alan. Since there were no problems, they didn't have to scope. Over the next few days, they will 'train' his bladder - clamping the foley catheter so his bladder will hold the urine for a while, releasing, then repeat. This will test and strengthen the sutures.

Things are starting off well, and we will update as the docs come out.

10:00 AM

Doc L has come out to briefs us on the closures of the incisions on Alan's leg. Things have been going so smoothly - apparently Doc HJ's part went so well that Doc L wasn't ready when she was done. They were able to close all the incisions without needing any skin grafts! We were a little bit worried about that - last night was had been talking with Aimee about skin grafts. They can come from the patient himself, though Doc L didn't like that option because Alan is so little and has thin skin because he's so young. The other options would be cadaver or animal grafts., but one of us donating the grafts would not be a possibility. We're glad that it wasn't necessary.

If there are no complications, the plan is to transfer from the ICU to the pediatric floor tomorrow. They will schedule a return to the OR to put on the spica cast next Thursday so his skin will have a whole week to heal. Then, a few days in the cast in-patient to be sure he's eating and comfortable and hopefully going home at the beginning of the new year.

Doc H was finishing the close on Alan as she left the OR, so we should be able to see Alan soon.

10:15 AM

Wow, that was fast! We just got word that Alan will be back in the ICU in five minutes!

10:30 AM

We made it back to the ICU in time to see Alan being wheeled back in, holding the PSP and watching Cars. It was so good to see him awake, calm and not intubated! He was intubated for the surgery, but is breathing on his own already. We were a little worried we would have to go through the whole extubation procedure again, which could delay our departure from ICU.

The Nurse Anesthetist was very happy with how Alan had handled everything. He told us that Alan was rather upset when he woke, but Alan has always been a cranky waker, so that did not concern us. He came out of the OR on fentanyl to calm him and morphine for the pain. He's still NPO for now, but we should be able to give him some ice water swabs to moisten his mouth in half an hour or so.

Alan being wheeled back to ICU watching Cars

After the marathon two weeks ago, this surgery was speedy and smooth. We're so happy to be back in the room with Alan, watching Madagascar and offering him ice water to dip his swab in!

Hey, it was Thanksgiving *last* month!

Medically speaking it's a slow day - Doc L and Doc HJ came by with their residents to get consents for tomorrow's surgery.

However, it's been a busy day for visitors. The Fannins came by again, this time to meet Alan and drop off some gifts from their church. We all joined hands as Pastor Fannin said a prayer for him. Mr. O'Brien, the father of one of Kevin's teachers, dropped by with a gift from the Hardy Oak PPCD/RSG/ALE team.

The Miller family also came to visit. The Millers adopted us through the Houston chapter of Candlelighters, an organization that supports families of children with cancer. They spent a Christmas in the hospital a few years ago when their oldest daughter was at TCH, so they know how stressful this is. Their son is Kevin's age and their kids had fun shopping for us. It was such a pleasure meeting this family!


The Miller Family

We could write a post on this blog every day thanking everyone who has supported us and it could never be enough. Gifts, money, time, effort, prayers, good wishes and encouragement - it has all been invaluable! We have also been receiving messages from the friends and families of everyone who has been sharing Alan's story and asking for prayers on our behalf. Everything has given us strength and we wanted to say how much we appreciate it. Thank you!

Playful today

This has been Alan's first full day off the continuous narcotics - his pain killers are now scheduled. With the fermoral nerve block catheter removed yesterday, that's a lot of meds removed in one day. It took Alan a while (as well as a bolus of his remaining painkiller) to settle last night. He was pretty playful this morning once he was comfortable, stacking and crashing his nesting cups, playing keep-the-foot-away-from-Mommy, giving Daddy the Fist of Fury, and playing my-hand-is-on-top with both of them! He even sang along with the ABC song a little. He's been saying a few words, but with a soft, kitten-like voice.

After the usual parade of medical visits this morning, Alan had a nice long nap this afternoon, probably to make up for the sleep he missed last night. There was some more pain this evening, but Alan finally fell asleep around 11:30 while watching his Blue Danube DVD.

Dad is back...

Daddy has returned from training and spent the night with Alan, so he got to speak to Doc H's fellow who came by in the morning to check on Alan. He was happy with the way things were healing so it was a pretty quick visit. What wasn't quick was the clean up from Alan's BIG poop, which got quite messy. They ended up removing the femoral nerve block catheter because it was stained. They will just use IV medications for the pain, but it seems to be enough since Alan seems to be comfortable.

Doc L came to change the dressings on his leg. After having a good look at his leg, she is planning on taking Alan to the OR on Thursday to close up the incisions on his leg. Some of the incisions may require skin grafts - the swelling from a fasciotomy could take months to come down, even with a wound vac, so a skin graft will speed up the time needed to close the wound and allow us to put the cast on. The cast itself will be a separate trip to the ER.

Alan has shown more movement and interaction today. He played "keep away" while Mommy was trying to nibble on the toes of his left foot, with quite a mischievous grin! He played "fists of fury" with Daddy, with Daddy providing the sound effects. He has mostly been using his left hand, which has us a little concerned. We took the blood pressure cuff of his right arm to give him a break and encourage him to rebuild the strength in that arm. He started to use both hands to stack Styrofoam cups so we'll bring his bath time nesting cups for him to play with. He's been pretty happy today other than fighting his breathing treatments, resisting his PT exercises, and expressing annoyance when Mommy leaves the room.

Speaking to the ICU pediatrician, though there are several factors (small in themselves but big when combined) keeping Alan in the ICU, the biggest single factor is the heavy medications on continuous drip he needs. Those are slowly being phased out, and by tomorrow he should be on scheduled doses only. These can be administered on the pediatric floor, but with the trip to the OR on Thursday, they may not transfer him until after we've had a night of observation post-surgery. We're still holding onto the hope that we can be out of the ICU by Christmas!

Easing off

Alan had a good night, sleeping comfortably and only waking when the respiration therapist came in to do his breathing treatment. Sara was happy to report that his O2 levels never went below 95, so that is one less annoying tube for him to deal with! Auntie Janet came in to sit with him this morning while Mommy had some time with Kevin.

The PICU doc came in to check on his medication levels and was quite pleased to see that not only had they found a mix to make him comfortable, they were even able to ease off on a few of them. He will continue to slowly wean Alan off the narcotics, depending on the occasional use of Propofol or a bolus of Fentanyl when they need to sedate him for dressing changes or adjusting his brace.

Alan had two very nice naps today and was happy watching his movies. After one of the naps, he was watching The Big Bang Theory with Mommy who was very happy to hear him say "Bang!" at the end of their theme song. He also grinned and giggled at the tumbling and wrestling pandas in his Ultimate Pandas DVD. It is so good to see him smile!

A good day

Alan had a good day. There was the usual parade of doctors, fellows and residents, but they were all happy with the progress Alan was making. The PICU pediatrician confirmed we are over the hump as far as the risk of Alan going back on the ventilator goes. He was doing so well that I asked to remove his nasal cannula this afternoon - his O2 levels were good even when the cannula was dislodged and it was just annoying him. His levels continued to be good even with it removed, and we're not worried because our friend Sara who is here to help is a pro at reading O2 levels.

There have been some fussy periods - he's still shaking off the effects of withdrawal. The methadone can take up to 24 hours to work, but he's doing much better. He has been asking for water but we can only give him a little at a time. Sara has taken over from Becky's water swab duty, but we're so happy he's asking for it, we don't mind. We were observing that despite the harrowing week he's had, Alan has lovely rosy cheeks. He's been feisty today too - all signs that our boy is getting his energy back.

We've added Kung Fu Panda to the DVD rotation and he's had two nice naps today. Hopefully he will be able to sleep well tonight. It's been a long week in the ICU but everything today has been an improvement!

Today's plan

Alan made it through the night breathing well on his own and with great O2 levels, so they took the ventilator out of the room. Yay! We're still trying to manage his withdrawal from the narcotics though. Children Alan's age metabolize the drugs very quickly, so much that they start having to double the dose every 48 hours. Alan had been on high doses to manage his pain for a week, which they then cut off cold turkey in order to get the tube out. They are reintroducing them in combination with the new ways of pain management to find a level which will make him comfortable, then they will start easing off them slowly.

They stopped his feeds late last night/early yesterday morning in preparation for the extubation, and they kept him off yesterday to be sure he was adjusting well. We had been up to 35 ml/hr, but we're starting at 20 ml/hr this morning. We'll work our way back up.

The PICU doc has also stopped the Lasiks. Yesterday he was happy to have Alan in equilibrium - fluid output equaling input. His swelling had gone down and repeated x-rays had shown his lungs were clear, so he no longer needs help getting rid of excess fluid. It's a good plan for today. We'll see how many times Alan watches Madagascar this time!

Big step

The ICU pediatrician came in to discuss the plan for today - preparing to take Alan off the ventilator. They are easing off the Versed and reintroducing the Propophol - Propophol is faster acting and will wear off more quickly when stopped. They want Alan awake and alert when they take the tube out so he will breathe on his own. He mentioned three things that might happen when they extubate - swelling along the airway (this has been checked and is not a problem), water in the lungs (his lungs are clear now, but once he's no longer on the positive pressure from the ventilator that may regress and the only way to fix that is to put him back on), and if the pain can't be managed at levels safe without the support of the ventilator (cross your fingers!).

Before they attempted this though, Doc L's fellow came in to change the dressing on his leg. The leg looked good, though they will still wait until the next dressing change on Monday make a decision on when to go back to the OR to close the wounds. Doc HJ's resident and Doc H also came in to check on Alan and were happy with what they saw. A nurse specializing in skin and wound care came by to check on Alan and gave some instructions to keep his recovery going smoothly. Doc KP came to work on the mixture of Alan's pain relief. She decided not to re-insert the catheter for the sciatic nerve block since the femoral nerve was the more important one and she didn't want to mess around his wound any more than necessary.

Once all this poking and prodding was over and Alan woke up, they turned off the ventilator and let Alan breathe on his own. He had been getting upset so we moved quickly, hoping that taking all those tubes away would make him more comfortable. He did well with the machine off, so they went ahead to pull the tube out. He really started crying then, despite Ultimate Pandas and then Madagascar playing on the TV. This crying looked to be due to pain rather than frustration, so they eased up the medication. The PICU doc was actually pleased with the energetic crying since Alan was taking deep breaths and this would keep the water out of his lungs. Alan was also shaking - he had been on narcotics all week, and he was going through withdrawal now they were being reduced. The PICU doc gave him Methadone and Ativan to help him feel more comfortable.

After the drugs had a chance to work, Alan switched to more frustrated crying, but was eventually soothed by the movie and water-moistened sponge swabs - he grabbed the swab out of my hand and rubbed it on his mouth himself. Our friend Becky had come to help today and he kept her busy dipping his swabs in a cup of cool water.

He watched Madagascar twice before we switched to Ice Age, then fell asleep for a nap with both hands tucked behind his head. By late afternoon, the PICU doc was quite confident that Alan would be able to stay off the ventilator. It was a long afternoon, but with great results!

Some more baby steps

We had a few more steps towards being extubated and leaving the ICU. The nurse practitioner came in to discuss the further reduction of sedation today, and the ICU doc came by later in the day to lay out the conditions under which they would take the tube out. The machine is down to the lowest rates right now, and if he doesn't have any problems with that tonight, they will give him a chance to breathe on his own without the machine making breaths for him tomorrow. If he does well with that, and there continues to be no swelling along the tube, they will pull it out.

Since we are preparing for him to breathe on his own, Doc KP, an anesthesiology/pain management doctor, came by to discuss some options. We need to look at alternative methods of taking care of Alan's pain because we don't want him to get too sleepy on the narcotics once he's breathing on his own. Doc KP suggested an epidural which would take care of pain in the abdomen and upper leg, but would not take care of the pain in the lower leg very well. Doc L had asked for a block on his femoral and sciatic nerves, but Doc KP was hesitant because she would have to go through his incision site and the nerve blocks would give no pain relief to his abdomen. Upon further consultation though, Doc L had expressed concern that she and other orthopedic surgeons have about the long term effect that epidurals have on their patients. She was not worried about Doc KP going through the incision to insert the catheters so the team went ahead with the nerve block option.

They had to remove Alan's hip brace for this procedure, so the ICU PTs came back to properly adjust the brace. They also brought in the Pedi Floor PT get things started on acquiring a stroller and car seat that will accommodate his cast. It's nice to know that is being taken care of.

Doc H's fellow came to check on Alan's incisions and Doc HJ came by for a quick peek. They were both happy with what they saw. Doc L also came to check on him - we confirmed dressing changes on Saturday and Monday.

Finally a member of Doc KP's team came to hook the catheters up to pumps - Alan has three stands now, one for the three clusters of IV pumps, one for the feeding pump and now one for the nerve block catheters. Unfortunately, the sciatic nerve catheter had come out - probably during the clean up after Alan's big bowel movement (it was funny to see him making faces and then realizing that looked like his poopy face). Doc KP is going to be visiting us daily anyway, so we'll talk to her in the morning about what to do next.

The fever still comes and goes, which has the ICU doc changing up the antibiotics and giving Alan Tylenol. They are also giving him supplementary potassium because of all the lasiks he's been getting. Alan was alert for quite a bit today, including yet another showing of Madacasgar, his PT exercises and for our good friend Denise who came to help out and kiss wiggly toes.

More active today

The nurse has been easing off Alan's sedation (and increasing the pain medication to compensate) so he can be more awake and aware, which is good for him even if it's only for a few hours at a time. The latest x-rays have shown that his lungs are clear, so it's another slow step towards getting the tube out.

He stayed awake for a couple of hours this afternoon while the ICU PT came by with some exercises to keep his left leg (the one not affected by the surgery) healthy. He is also getting a brace to keep the left foot in a flexed position to prevent foot drop while he is confined to the bed.

As a result of all this activity, he was awake for a visit from Santa Claus! He also enjoyed watching his Madagascar DVD, even squeezing my finger and wiggling his toes while King Julian was singing I Want To Move It, Move It. That, along with his Ultimate Pandas DVD, seemed to hold his attention today - all we are missing is Happy Feet to complete his monochromatic animal parade. For some reason, he likes black and white animals.

Doc L came by for a quick check on Alan but other than being happy with what she saw and letting us know they would be changing the dressing on his leg on Saturday and Monday, there was nothing new from her. She will look at the decision on when to take Alan into surgery to close the incisions on his leg on a day by day basis.

Doc HJ came by to see Alan after a long day of surgeries. The main thing she wanted to check was the drain from the bladder, to be sure there wasn't any urine leaking. She was happy with that, but because of the swelling around his scrotum (a result of the hemipelvectomy) the foley will probably stay in longer than the 7-10 days originally anticipated, since Alan will not be able to urinate with the swelling. The stent is made of silicone so there is no problem with it staying in until that swelling goes down.

Alan has had a bit of fever coming and going - none of the cultures they have taken have come back with anything. Aimee told us that a little fever is not unusual after such a major surgery or when a patient is not moving like Alan. It's bringing his blood pressure down a little, but the nurse is keeping his fluids and Lasiks up. He is also getting antibiotics and Tylenol as well as cool compresses to keep him comfortable. Doc L is not worried so we're not too concerned.

More new technology

Late last night Alan had his bed replaced with a newer style bed that has several technologies for patient therapy. Not only does it have an inflatable mattress that cycles on a user programmable schedule to help prevent bedsores, but it also can be programmed to tilt and rotate for the same. It is the same type of bed used across the street at Texas Children's Hospital. However, Alan is so little that some of the rolling still has to be done manually with rolled up towels and sheets to prop him in place.

Very early this morning, Doc H and Doc HJs fellows stopped by to install a device called a Wound Vac that helps relieve swelling in wound areas. This device helps the wounds in his leg close by removing excess fluid... it's so portable the docs have sent folks home with such a device.

Right now, the main thing keeping Alan in ICU is the intubation... once he no longer needs that, he'll be considered able to be moved to the regular pediatric floor.

Small improvements

Doc L came to change the bandage on Alan's leg again this afternoon. We're looking at surgery some time next week after a special vac/drain has been applied to his leg to bring down the swelling. In the mean time, on the recommendation of the ICU pediatrician, we will be getting a new bed that adjusts pressure under Alan and will also be rolling him from side to side in order to avoid bed sores.

Alan was awake a few times through the day, though still calm. He's getting used to the drugs, and the nurse commented that little patients like him will often metabolize the drugs quickly. They will keep playing with the mixture and level. Doc H also came by to check on how his wounds were healing and he was happy with what he saw. The overall swelling has gone down, and he's tolerating a higher rate on his feedings.

Getting into a routine

Things have been settling into a routine. Alan has been resting comfortably while the staff keep him sedated and manage his pain. Alan had a small bowel movement today, which is progress from even a few days ago. His urine is almost completely clear. Hooray for poop!

He's getting food through an ND tube as they ease off the IV nutrition - starting off with just 5 ml per hour so his digestive system would keep working. The ICU pediatrician raised the feeding rate up to 10/hour this morning since he had been tolerating the feeding well. He also increased the rate of Lasiks to try to get the swelling down more as well as a supplement that would help Alan get rid of the proteins in his blood from muscle breakdown. Slowly, slowly they're getting Alan's body back into balance.

Doc L stopped by today, she's been pleased how everything looks. She wants to wait a little longer for the swelling to go down before she can sew up the incisions on his right leg. We will probably be in ICU until the weekend. One of Doc HJ's partners stopped by as well - things are looking good... they expect he'll keep his catheter and stent for 7-10 days (we're on day 4 right now).

Finally, there was an x-ray of his lungs and an ultrasound of his kidneys. They just want to make sure there are no blockages at all with his urinal tract, especially in the repaired ureter. As for the culture from Alan's lungs on Saturday, because of the weekend they only started the testing on it today. It will take 24 hours for the full results, but so far so good.

And now for a few smiles and laughs, because if we can't laugh, we'd never stop crying:

• when we first went to the bathroom in Alan's room to wash our hands, we looked around for the faucets to turn on the water. The base of the faucets were there, but nothing to turn them. It took a minute or two to realize that these sinks were controlled by foot pedals!


• on a related note, as befits a cancer hospital, MD Anderson is full of hands free dispensers, which leads to a lot of ice and water all over the place as we try to figure out the sensors to turn them on and off.


• because of the holiday season, that here has been a lot of musical entertainment in the halls of MD Anderson. This morning, there was a group of young people in the Fountain Courtyard singing and dancing - it was real life Glee!


• while Alan was free of intubation on Saturday, we often gave him a little water on a sponge to moisten his mouth. He would eagerly stick his tongue out for it, and a couple of times we asked him if he wanted more water. He roughly, but distinctly, said "Yah! Yah!" with much enthusiasm.
  
  

A quiet night

Alan slept quietly and without incident through the night. There was a little concern early this morning, but it ended up being due to a loose lead that had been dislodged by his brace rather than any real problem.

Doc L came in this morning to change the dressing on his leg and was very pleased with how everything looked. The swelling on his leg was enough that she would not take him back to OR on Monday to close the incisions yet. They are adjusting the fluids, medications and supplements to help him flush out so the swelling go down and we'll revisit the issue. She will adjust his brace on Monday though, to match the angle it will be in the spica cast.

Since Alan has been resting comfortably, we expect to settle into the ICU for the foreseeable future. The docs prefer to keep him intubated and sedated under close monitoring. He's always been very stubborn resisting sedatives and anti-anxiety meds, so being able to give him enough to stay calm is better done under the supervision of the ICU. It's a little inconvenient in some practical terms for us - no food, drink, or cell phone use in Alan's room, the floor, or waiting room. We have to walk out past the elevator into one of the hallways. It's a small price to pay for the level of attention that Alan has been getting.

A long day

Alan slept uneventfully until about 4 AM this morning, where we noticed he would sleep for a little while and then wake up upset, with comforting by water using the little sponge on a stick. However, the doctors were concerned about his O2 levels, and so started a treatment by IV that would adjust his ph level, as well as giving him Lasix. Both treatments would be used to increase his rate of urination, hopefully easing the swelling and fluid buildup.

He responded to this, sleeping more and longer, with less work while sleeping...increasing the O2 level getting into his lungs. Several docs came by to check on him, answering our questions, and generally being pleased with his progress. Also, he received a chest x-ray to check on his lungs.

Alan had a quiet afternoon, drifting in and out of sleep. He loved having us give him water with a little sponge on a stick, and at one point slept with one of our fingers in each of his hands.

After dinner though, he was getting upset and no hand holding or water would comfort him. The nurse and respiration tech were also concerned about his O2 saturation levels, so the ICU doc made the decision to reintubate him and up his pain meds. The x-ray after they intubated him show that his lungs were a little worse off than they were this morning. They drew labs and the ICU doc is sending in a culture from the secretions from his lungs to be sure there isn't anything growing.

Alan is resting much more comfortably now, and between this and the new pain meds, hopefully this will let him heal more quickly.