Eleven weeks

Alan had a good night, probably due to Ativan last night. Even so, with the lowered PCA rate that is a great sign. He had a couple of nausea incidents leading to vomiting. Because they happened without any apparent sparking factor, we decided to stop the feed. His pain management seemed pretty good today. He is still doing plenty of BMs, but we are more concerned with nausea.

His heart rate had been reaching 135, which could indicate pain or stress. We are keeping the morphine PCA at 0.4 but we have the option to increase the rate. Alan's hemoglobin counts were a bit low, so he got a transfusion tonight. The high heart rate could be related to the low blood count, and the nausea could be an effect of second round of Ifosfamide. By this evening his heart rate was down to 120.

Daddy convinced Doc H2 to write orders for a CT. If another blockage is happening, we would like to know as soon as possible. The scan is planned for Saturday at 10 AM.

It was time for changing all the dressings today - PICC, IJC, nephrostomies and G-tube. The nurse gave Alan some Zofran before dressing change so there weren't any problems. All the dressing areas look good and the bedsore breakdown on his back (especially the spot on tailbone) is completely healed. The new cream is working very well and it smells better than the old one too!

Alan took another big tour of MDA today. We went up to the 24th floor observation deck where he sat on window ledge twice (he requested to be put up there the second time).  Alan directed Daddy to take him over to the Sarcoma Center but everyone gone for weekend  - we were amazed that Alan remembered where to go.  Alan requested to play in toy room when walking past after returning to the 10th floor. He had a great time there and was in a pretty good mood tonight being entertained by bubbles and playing with the evening nurse.


Master of All He Surveys


Hanging in the play room

A little bit of a rougher day...

Last night was rougher than last several, with the symptoms of a possible impending blockage returning, including the rumbling stomach. Because of the symptoms, we cancelled PT and OT today so he could take a day off.

He vomited in the evening without any apparent cause (lately, the vomiting seems to have come when moving him or when he was straining to poop or some other external factor). He is still pooping though, which is a positive sign.

The morphine PCA was brought down to 0.4. while we increased the Fentanyl patches up to 37mcg. We also gave him Ativan  this evening so he could get a good night's rest.

Dec my room

Alan had a good night after his first day of chemo. Miss Aimee came by today to keep him company while Daddy went for a haircut. While she was there, volunteers from Dec My Room came with a load of Sponge Bob and Cars stuff to decorate his room. Alan had just woken up and wasn't happy to see them but they left lots of stuff for him. In any case, we were very grateful for their organization.

It was time for dressing changes again today. Daddy kept him distracted through the changes with silly counting. Then it was time for PT, with Alan walking along to pick up his flash cards off floor.

Doc Huh came in to talk about plans for making this treatment outpatient, with an MRI after this round of chemo.

A bit fussy today

Alan was a little fussy today, with a bit of stomach rumbling, but continued bowel movements and gas. We replaced the Fentanyl patch today and voiced concerns about the stomach rumbles we've been hearing with the doctor. Rumbles back in June were indicative of a blockage in his gut, so we want to keep a close eye on them. The orders came through and we started the second cycle of Ifosfamide today.

We talked to the speech therapist about using modified PECS with OT, but we were unable to get PT due to time constraints. He played some more with the Wii and sat chair in his room for OT with his number flash cards.

Miss Carolyn (a friend of our friend Denise) who is doing a follow-up scan here at MDA, came by to visit.

Nibbling

Alan had a bit of a restless night last night, but after only a little vomiting this, he was ready for the day. He worked with Denise for PT today, walking while wearing the AFO with his socks and shoes.  And didn't even want them off afterwards! He also worked with Lindsey a bit for OT. We set up two chairs in the room, one the small wooden chair from Rehabilitation, the other a standard room chair that was just the right height to use at a table. This way we can work on OT activities in his room if one of the OTs are not available. We took pictures to help build a PECS board, at the OT's suggestion, as a way to help Alan handle the procedures, tell us where he hurts, or what he wants.


Since we have had enough negative cultures, the doctors have stopped the antibiotics and have drafted orders for chemo - the plan is to start Tuesday. Alan had several poops today, a good sign!

Alan took the big MDA tour today while wearing a calculator on his head. Silly boy! We know that he always has numbers on the brain. He saw daddy eating a banana and wanted some himself! After having some nibbles, he gave the rest to daddy and insisted that daddy finish the rest of the banana! Almonds were greeted with a 'patooey' but he ate peanuts and goldfish. He drew a little, played the rocket math game on the iPad several times, but really enjoyed the Wii Cookie Monster Counting Carnival game which he hadn't played since before we were admitted. He played for almost an hour!


Numbers on the brain


Yummy banana!


Cookie Monster's Counting Carnival

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[video - Alan playing the Wii at the hospital]

Back to School and Bananas...

Alan was a little more animated at doggy therapy this week. He enjoyed petting the dogs. We got to see Udon again and this time with both her bows! His morphine PCA was bumped down to 0.8 around noon on Saturday. If he can handle this lower rate this will hopefully be a step to getting him off the IV painkillers. Alan hung out with Miss Aimee Saturday afternoon while we checked out of the Ronald McDonald House.

He slept well Saturday night on lowered PCA rate which was a good sign. However, he did vomit this morning during the diaper change and it was a bit of a challenge to clean his diaper and try to deal with the vomiting.  The continued vomiting (normally only happens when he is shifted around or agitated) has us somewhat concerned. But he was all cleaned up in time for Daddy and Kevin to have lunch with him and Mommy.

The doctors have been pleased with Alan's overall progress and had no changes today but had the good news that last urine and blood cultures taken on the 23rd are negative so far. If the cultures stay clear, he can probably start his next round of chemo early this next week.

Alan and Daddy said goodbye to Mommy and Kevin as they drove back home for Kevin to start school on Monday. Daddy and Alan did another round of traveling the skybridges and halls of MDA for the daily 'get out of the room' travel.

After having fun with bubbles, and the iPad rocket game (giggling when he would 'launch' his rocket), he surprised Daddy by wanting some of his banana!  Though he only had some nibbles, it was yet another good sign!  Of course, after he was done, he wanted to feed Daddy the rest of it... 'Here Daddy!'




Fluffy!


So soft!


Wearing his shirt


"Alan was here"

Ten weeks

Alan slept well last with only one wake-up. Alan has been in the hospital ten weeks now, and being Friday it's time for dressing changes today (PICC, IJC, nephrostomy, and G-tube). It is also time for a new Fentanyl patch today. The hemoglobin counts are low but not down to the level (under 8 at MDA) that they want to give a blood transfusion. Since he's so puffy, he will be getting a little Lasiks. We also got good news that the blood culture taken on the 15th is still negative.

A quiet day

Today was a very quiet day, with Miss Aimee keeping an eye on Alan while we packed up to check out of the Ronald McDonald House and take Kevin home to San Antonio. Between the anesthesia yesterday and Ativan last night, he slept through most of the day. We are holding tight on pain management because of yesterday's procedures and pain, so there weren't any changes.

The nurse took blood and urine cultures to see if the infection is responding to the antibiotics now that the infected port is gone. On the plus side, Alan had good good BMs today and is getting more talkative.


Going stealth for a walk

New lines and walking

Alan's G-tube was clogged last night and could not be opened up with any technique. His nurse tried cola, warm water, and baking soda - none of them worked. Since he was going down to Interventional Radiology to put in another line, IR will also replace the G-tube. It seems whenever we go down to we're always getting extra stuff done. IR decided to put in an internal jugular catheter (IJC) in his neck on the same side as PICC. While he was under, they also changed his nephrostomy dressings.

Once he was back upstairs, he felt good enough to walk to nurse's station with AJ this afternoon. He also got a new fentanyl patch today.


Painting with Miss Sheila


Watching his vitals in recovery


Choosing a sticker after walking

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[Video - Alan walking out to the nurses station]

IR delay

Alan got a blood transfusion today because of low hemoglobin counts, but there was still time to work with the OT and PT. We were hoping to go down to Interventional Radiology to get another line put in (since yesterday's attempt to get a PICC in failed) so he was NPO last night. Because Alan's procedure was a last minute add-on they weren't able to fit him in. They will try to get him in tomorrow.

Doc H2 came to see Alan. He may delay chemo (which is set to start on Thursday) because of the infection. Since it will depress his counts he wants to give Alan a chance to recover from the port removal.

The G-tube got clogged today, so the feed had to be stopped and his nurse used cola to open it up. The packets of lactobacillus he has been getting to help repopulate his stomache with good bacteria have not been dissolving well and have been a major factor in clogging the tube. We are switching to a new form of lactobacillus - chewable tablets ground up instead of the granules. Hopefully this will help.

The nurse hung D5 with his liquids tonight since he's been NPO for two nights and had the tube clogged. Alan was pretty interested in checking out the bag and directed his nurse Darci to hang and spike it. It's nice for him to take ownership of his treatment!

Port removal with hiccups

This morning Alan went down to OR for surgery to remove his port. Miss Sheila from Child Life came to keep him entertained while we waited through all the preliminaries. She had a white "bunny suit" to go over her clothes so she could go all the way into the OR with Alan. Unfortunately Mommy had to say good bye in the hallway.

Holly came to see us in the surgical waiting room about half an hour in to the procedure to tell us that the tubing from the port had adhered to his vein, so surgeon had to make an incision in his collar bone area to be able to get it loose. That meant they couldn't run a CVC there, so they would put a PICC line in his other arm instead. However when they put it in they couldn't get a blood draw, so it came out. They left the old PICC line on the right arm instead of replacing so they don't risk losing access and also put an IV in his right hand. We just can't seem to catch a break, even on something that should be a standard procedure.

Alan bounced back from the procedure pretty quickly, enough that he could work with Lindsay the OT. We also replaced the Fentanyl patches with a single 25 mcg/hr patch this afternoon. Because of the incision in his left arm from the PICC attempt, we have to do BPs on his left leg now, which makes readings for whether the Labetalol is needed difficult. A BP taken on the leg will read higher than one on his arm, but there is no definitive way convert what that reading would have been if taken on his arm so the nurse will have to make a judgement call.


Darci blowing bubbles for Alan while we wait for Transport


Miss Sheila in the bunny suit to go into OR with Alan and the "pink iPad"


The iPad is now the world's most expensive tray

Playing with pups

The IV morphine in Alan's PCA was stepped down to 1.0/hour and we replaced his Fentanyl patch. He was still a little shaky so we asked Doc O to up the patch to 25/hour. Hopefully it's a step forward in managing his pain.

Alan was a litte more interested at dog therapy today, feeling Sesame's tail, feeding treats to Gumbo, and throwing the ball to Minion. It still wasn't quite up his normal enthusiasm level but it was good to see him having fun with the doggies.

Uncle Peter brought big brother Kevin home from his visit with our family. They were diverted and delayed by thunderstorms in the area but finally made it by Saturday night. Alan wasted no time in ordering Uncle Peter to blow bubbles again. It was nice to be together again, at least until Kevin has to go back to school next week.

On Sunday Doctor H2 came by to check on Alan. He's pleased overall with Alan's progress, but he is waiting for the infection to clear. There has been some difficulty tracking down where the ECG results went to. We confirmed with the him that the ECG was done under and that it was Alan's name and medical number.


Feeling Sesame's tail


Feeding Gumbo a treat


Throwing balls to Minion


Big brother Kevin is back and he brought popcorn!


Sleepy

Eight weeks

Alan's white count is up to 35,000! The shot of Neulasta he got last week stays in the system for several weeks so it is still having an effect in boosting his white counts. Today is Friday, the start of yet another week, which means it's time for dressing changes. We will change the two nephrostomy tubes, the G-tube, and PICC line, but we will take the port needle out rather than replacing it and changing the dressing since we will be removing it Monday.

Holly, Doc HJ's PA, came to discuss Monday's surgery. We are scheduled first thing in the morning to remove the port and put in a percutaneous subclavian line (rather than the Broviac Catheter so it can be removed more easily). The surgeon doing the procedure didn't think that replacing the PICC would do very much but the Attending wanted Alan to have all fresh lines (apparently replacing the PICC line is a standard procedure in transplant patients).

It was another day of hard work with the OT and PT. Today Alan walked out the door to the wheelchair a few feet into the hallway. Then it was time to go down to Rehabilitation with the OT to sit in the chair again and work on numbers. He was a little annoyed that the Scrabble tiles didn't have a full range of numbers and the card game only went up to 12.

Miss Sheila from Child Life brought Cora, a doll for demonstrating medical play, and Alan took care of her. He actually wore the stethoscope and "listened" to Cora, pronouncing her "Perfect!". We were talking with Miss Sheila about Alan's OT session and it turned out she had a bag of orphaned Scrabble tiles that we could use for numbers - all the way up to 98! He had a blast once Daddy grabbed a Sharpie and numbered the blank side of the tiles.

We took a long walk over the sky-bridge, picking up a box of popcorn for Alan from the Fountain first. We wandered around the Mays Clinic some more, this time checking out a section we hadn't explored before. There was nice hospitality center for patients and caretakers, a museum exhibit about the history of MDA and a very fun-looking Child Visitation center.



Alan earned stickers for walking again


Sitting for OT again


Mmm, popcorn!


Flushing Cora's port


"Perfect!"


Arranging his numbers

Working hard

Alan slept through the night except a brief-wake up at 3 am to push the button and take a few sips of water. Today was going to be the last day of the minocycline lock. It's not working but as a precaution, we asked it be continued until the port is removed, probably Monday.

We headed downstairs to Rehabilitation (where we see the therapy dogs on Saturdays) to work with the OT. Alan sat in a chair for the first time since entering hospital and played with his trains and glow tubes. We're working on getting him to reach farther and higher.

After OT we went out to The Fountain, where we met up with Miss Becky, Tyler and his Grandma who came to visit before heading home. Tyler blew bubbles for Alan and they played with the gigantic Sponge Bob Magna-Doodle they brought for him! When we went upstairs we saw that the Candelighters were holding a Summer Surprise event in the family room. There was lunch for the families and presents for the kids. Then it was time for PT - Alan walked out the room to get to his wheelchair set out in the hall. He worked hard so we took him for another walk and ate french fries by the fountain.

Doc O from ICU who has been consulting on our case came to talk about getting him off the PCA. We will probably start today with Fentanyl patches 12 mcg/hr while bumping his PCA morphine rate to 1.2-1.3/hr. We hope this puts us on the road to getting off the IV morphine.




Working hard for OT


Throwing pennies


Tyler blowing bubbles for Alan


Playing with Candlelighters gift


Working hard for AJ


Two stickers for standing and walking


Surrounded by fun   

Bye bye hair

Alan was up since 3:30 am since they were working on him to get his lines going. He really enjoyed watching Mary Poppins and A Bug's Life with Miss Denise and Mister Russ - looks like we'll need to get some new movies. They had hoped Mary Poppins would bore him and he'd fall asleep but he thought it was fun! Denise took Beads of Courage sheets back home to work on tabulating all the beads he's earned since we started this journey back in 2009.

We do not have results from echocardiogram yet. It may take a few days since it needs to be read by a pediatric cardiologist at TCH since it is a very rare specialty and MDA does not have one. Alan's nurse did a blood draw from all lines for cultures. We had to put TPA in white lumen again to get it going.

We went to play room to paint but ended up playing with Play Doh instead. Miss Sheila brought him brand new rolling pins to play with while Miss Krishanda brought out all the cool Play Doh gadgets. Doc O and Riza from ICU who are working on his pain management came by and played too!

He has been very irritated today since his hair has been falling into his eyes. We went to the barber for patients on the 6th floor to get his hair cut. He was annoyed to have his walk cut short but enjoyed the haircut. He kept calling out "It tickles!" and earned a lollipop. Then it was time to go back to his room to get the nephrostomy and G-tube dressings changed. After changing his diaper and the bed he fell asleep. It was a long productive day for him.

Holly, Doc HJ's PA came by to discuss port replacement options. We can't replace the port while he is infected so they are thinking about putting in a Broviac catheter, a type of central venous catheter that can be removed easily. We will look at putting in another port after the infection is cleared and he is finished the second cycle of Ifos. Holly said that they do do not stock double lumen ports in Alan's size, which surprised us since Alan's first port was a double lumen. Pedi Surg at MDA stopped using them because they had so many problems. That may explain why Alan's port was replaced with a single lumen port back in August 2009. Nice to finally have an explanation. Holly will consult with Doc H2 to see how much access he thinks Alan will need over the next month. If his double lumen PICC is enough, they may not even put another line in for now.



Showing Miss Denise and Mr Russ how to play


Working the Play Doh


Snip!


Squish! into the Cars mold. It's Lightening McQueen!


Distracted by Fruit Ninja while his hair is cut


Post-haircut with his lollipop


Sleepy after a long, busy day

Time for an echo

Alan had a good night with vitals at midnight, then poop. He asked for the iPad then fell asleep at 1 am, letting Miss Becky get back to bed. After she left, the doctors came on rounds. The culture on the 11th  was positive - because of this ID has signed off his case with the recommendation that his port be replaced. There are a few days left in the minocycline lock treatment, but there should have been more of a response if it was going to work. The attending ordered an echocardiogram to cover all bases to seen how all the valves are working and will consult with Doc H2. Since his counts are good right now, the sooner we do the replacement the sooner he will be back in a condition for the next cycle of chemo. The silver lining is that we can put a double lumen port back in instead of the single lumen port he has had for the last three years.

We went for a really long walk today, taking some time to throw coins in the fountain. We came back in time for the echocardiogram. Alan objected at first but once the tech started the exam he was having a grand time watching all the different views. He objected when she moved past a screen he liked but we told him to hold on, that at the end she would show him his favourite view again.

Alan vomited a couple of times today. This has been the  first 24 hours of 10 ml/hr feed so we paused for half an hour to give his tummy a break. It will take time for him to get used to the increased volume. But three poops today means he is digesting so we are hopeful. On the down side, we have noticed that Alan is losing his hair again, scattered on his pillow.

Tonight, Miss Denise and Mr Russ came out to visit and stay with Alan. Between them and Miss Becky we are so lucky to have such friends to take the time to come visit and help.


Sleeping sweetly for Miss Becky


Checking out the picture of his heart


Alan directing which view he wants to see

Yet another week

Alan woke up at eight last night after his late afternoon nap. He was all perky and feisty so he stayed awake and played until 1 am so he slept very late today. When he finally woke up he worked with Miss Denise the PT on sitting and standing. He wanted to go sit in his wheelchair so she helped him walk to his wheelchair by the door from the bed. It's good to have incentives!

After all that hard work he got to go on a walk to the skybridge where we ran into Doc L and her PA Kristi. They were glad to see him looking so perky. We asked about the video on hemipelvectomies they had filmed footage of Alan for last fall. They are still working on production, but Doc L said they would have a copy of the footage of Alan and his walker sent to us.

Alan did well on the 8 ml/hr feed last night so we bumped his feed rate up to 10 ml/hr this afternoon. Miss Becky was in town so she came by to spend the night with Alan!


Sleeping in like a teenager


Blowing his own bubbles


Blowing bubbles is thirsty work

Recovering weekend

Alan was mostly quiet Friday night, with a poop at midnight then settling back to sleep. Since the first cycle of chemotherapy finished yesterday the TPN is going through one of the PICC lines instead of his port. He had a mild fever last night - hopefully between the minocycline lock and the fact that we are no longer infusing anything through the port we can lick that infection.

Saturday morning we went down to Rehabilitation to see the visiting therapy dogs. Alan had a small bout of vomiting before we took him down. We hope the nausea will start to ease about a day or two after the end of chemo. There were a lot of big dogs this time and though Alan enjoyed watching them he didn't want to play. We'll try again next weekend. One sign that Alan is returning to normal is that he has started asking for specific soccer jerseys to wear or hold again. Not only is he asking for particular numbers, he is also asking for certain color/number combinations!

He is definitely feeling discomfort while pooping, even with all the laxatives, but feels better after being cleaned up, even if he doesn't like the process while it's taking place. Now that the first cycle of chemo is done Alan got a shot of Neulasta, a long-acting version of Neupogen (which means only one shot!).

Summer and her mom came to say good bye before they headed home. We were happy to see that Summer was walking on her own! Without the walker, Alan was much more charming to her and they had a fun visit. They popped bubbles together, Alan demonstrated some of his new toys, and Summer snapped self-portraits of them on her phone.

Doc H2 was on call Sunday morning so he came by with the other docs on rounds. The primary goal right now is to clear the infection from his lines before we try to find another solution for Alan's pain management. IV morphine is the main thing keeping us inpatient in the hospital since the other treatments can be managed on an outpatient basis. Overall Doc H2 is happy with the slow but steady progress. Right now Alan's treatment is about buying time - time to find new treatments, time for him to grow so we have increased surgical options.

We took Alan on another long walk on the sky-bridge, looping around twice by cutting through the Picken Tower. When we got back Alan played on the iPad in the 10th floor family room then it was back to his room for nephrostomy and G-tube dressing changes. He was pretty tired out by the process so he fell asleep soon after the dressing changes.


Alan checking out Udon


Alan and Summer


Alan and Summer pop bubbles


Summer taking pictures


Playing with his ABC board


Throwing pennies in the fountain


Dinosaur stickers post-dressing


Sleepy!