Wednesday, June 30, 2010

Wednesday, June 30

Collin had his first outpatient OT session today. He responded to and interacted with the therapist very well. She reviewed his history and had him do different activities so she could assess him and his abilities. Then she used play to get him to work on various skills. There was a play kitchen he kept pointing to, so she got a small bench for him to sit on so he could play with the kitchen. He used both hands to open the different doors, and to reach to pick up or put down the toy food. He even tried pulling himself up to stand a few times so he could reach better. The therapist gave me some suggestions of things to try at home to help him continue to work on skills. After the therapy session, we made a quick stop at a store on our way home. It was there I realized that my kid was being stared at by other kids, and even some adults. Thank goodness Collin is too young to realize that he's different! This afternoon, Collin was easily frustrated, which was made worse by the fact that I couldn't understand what he was trying to communicate. I think now that he realizes he can't just get down and play on his own, his frustration is bound to increase.

We also got the feeding bag extension dilemma taken care of today. The insurance company had initially approved four extension kits; each kit is just twelve or twenty four inches of tubing; they can be cleaned and used again for a week. We asked how much it would cost us to pay for more kits if they weren't covered by insurance. The twelve inch kits were $46 apiece, and the twenty four inch kits were $48 apiece. Yes, that's just for a length of tube. Then I asked how much 30 more feed bags would cost; they were $12 apiece, or around $360 for a box of 30. It's cheaper, less work, and more extension length to get extra bags and cut the tubing like I've been doing, so that seems to me like the logical way to go. The home health agency was going to work on getting insurance approval for more extension kits; meanwhile Bill looked online to see if we could get the bags anywhere else for less. He found them on Amazon for $122, and then on eBay for $60! Needless to say, he ordered them right away (from eBay). Then I spoke to our social worker from the hospital. She is going to check with our supplemental insurance tomorrow to see if they'd cover extra bags, and she told us the Four Diamonds Fund (for local children with cancer) will reimburse us for the eBay purchase of bags. After all of that was figured out, the home health agency called back to say they got the approval for more extension kits! So, we should be in good shape for a few weeks. In the end, I'm just left wondering why the manufacturer of the bags doesn't just make the tubing longer in the first place, to improve the quality of life for those who have to be tethered to a pole for twelve hours?!?!

Tuesday, June 29, 2010

Tuesday, June 29

Saturday & Sunday, June 26 & 27
I spent the weekend trying to get the house back in order, as well as going through all of the stuff we had at the hospital, either putting it away, or re-organizing it and re-packing it so that it's ready to go back to the hospital the next time. I will continue living out of my suitcase so that all of my things and Collin's are ready at a moment's notice. I continued to work on getting down a routine for Collin's care. Nothing was easy, because Collin would hardly let me out of his sight, and every few hours I'd have to stop and give him medication. Saturday morning another visiting nurse came to draw labwork and supervise a dressing change. By Saturday afternoon I realized we had not received the case of enteral nutrition that was supposed to have been overnighted to us, so we had to make a bunch of phone calls to get that resolved so we would have formula to feed Collin through his feeding tube over the weekend. Sunday morning, I went to give Collin his morning meds. The first one went through the tube without a problem, but the next one exploded back at me. I called the nurses at the hospital who had me try a few things to unclog Collin's feeding tube, but nothing worked. So, I had to decide whether I wanted to try replacing Collin's tube myself, or if I wanted to go to the ER to have someone else do it. I decided I would try, and despite a minor snag that one of our nurses talked me through on the phone, I managed to get the tube in and functioning! Who knew my lesson last Thursday at the hospital would come in handy so soon!

Monday, June 28
We had our first outpatient clinic appointment first thing this morning. It went well; the clinic is behind the hospital, so it's close to home, it was organized so things ran smoothly, and the staff are very friendly. We saw Collin's oncologist, and Collin recognized her right away. The plan is for him to start his next round of chemo this Friday. We will go back to the clinic in the morning, and as long as he's still doing fine, they will order his next dose of Vincristine from the pharmacy, and we'll have to wait for about an hour for the order to be filled. Then they will administer the drug there in the clinic; the administration of Vincristine only takes a minute. Then they will give me the prescriptions for the other oral chemo drugs that we will give at home over the next few weeks. Collin will continue to be seen at the clinic at least twice a week, and at any sign of a fever, he'll be readmitted to the hospital. Then around day eleven of this round of chemo, he'll be readmitted to the hospital for a few days so his next dose of Cytoxan can be given. Then we should be able to come home for a little while longer, until the next round of chemo.

We also have some therapy appointments this week and next week, scheduled in between clinic visits. All of these appointments, along with all of Collin's care at home, will keep us pretty busy!

Tuesday, June 29
Today we had no appointments to get to, and no one scheduled to come to the house. It was Bill's first day of working at his office since we got home from the hospital, so it was just me, Collin and Neya at home. I continued trying to get things crossed off my To Do list, and I feel like I'm in pretty good shape as far as that goes now. I had to call the home health care agency about getting some more supplies; in the hospital when they were setting up the feeding pump each day, they would cut the tubing from one bag and use it to make an extension on the bag they would use for Collin's formula so that we'd have more slack to get around with; otherwise he'd have to be within about 2-3 feet from the IV pole. So I was doing this at home too to make life easier, but that meant I was going through the supply of bags they sent twice as fast as they expected. They need a doctor's order for the bags or extension kits, so they worked on getting that. They called to tell me they were sending four extension kits because that's all the insurance would cover per month. So, first I will have to figure out whether they are reusable; I'll be surprised if they are because the feeding bags are not. Then I am going to make some calls this week to find out if the insurance company will cover more bags or extension tubing, and to explain how difficult it is for a child to have to be tethered to a pole for twelve hours with only 2-3 feet of slack. Even if it's used only at night, 2-3 feet doesn't give Collin any room to move around in his sleep without pulling the tube too tightly, and if it's pulled that tightly around his neck (as I found it once in the hospital in the middle of the night) it will choke him. If they won't cover any extra, I think I'll find out how much they cost and have the agency send more, and we'll pay for them ourselves. It will totally be worth the convenience.

Friday, June 25

I spent the morning packing up our belongings and getting ready to go home. It's amazing how much we accumulated in one tiny hospital room! It was very difficult to say goodbye to our nurses and therapists; in a way they have become like family. They have been there for us, supporting us, educating us, cheering for us, sharing in our joy and heartache over the last two months, some of which was the lowest point of my life. I know we will see them again in just a few weeks, but I will miss them while we are gone; they are some of the most amazing people I will ever meet.

Walking into my house this afternoon was an awesome experience. I never thought of my house as luxurious, but it sure felt that way today! After hugging our dog, who I had missed immensely, I walked from room to room and just absorbed the feeling of being home. I'm not sure what Collin thought, since he can't really tell me. Neya brought him some of his toys, and he pointed to them right away and seemed eager to play with them. It's hard though, since he can't just run to whatever he wants to play with.

Eventually, I started the overwhelming task of trying to get organized. I had to get all of Collin's supplies and medications figured out and set up. A home nurse came late in the afternoon to teach us how to administer the IV antibiotic that had to be given for three more days. I realized that in the chaos of getting home, I had forgotten to give a dose of medication; even though it wasn't a critical one, I still felt guilty and worried that I wouldn't be able to handle the responsibility of Collin's care very well. But we survived the day, and I will use the weekend to finish getting organized and get into some sort of manageable routine.     

Thursday, June 24

Last night, soon after Collin was asleep, he woke up and was crying inconsolably again. His nurse said it looked like he was trying to climb out of his skin, which is exactly how I described it a few weeks ago. She gave him a dose of Morphine, and had the on-call resident come see him. The Morphine did help him calm down and get back to sleep. This afternoon it happened again, just as the attending physician and resident came in during rounds. Pretty quickly the attending physician had the nurse give a dose of Morphine, and for about twenty more minutes, I held onto Collin as tightly as I could to keep him from hurting himself. Then, once the Morphine kicked in, he was perfectly calm, and was able to interact appropriately again. The attending physician talked again about Morphine withdrawal. Collin's nurse today thought it was most likely Morphine withdrawal as well. Tonight, the same thing happened; after being asleep a short time, Collin woke up screaming and slammed his head into the bed siderail as he threw himself around the bed. I held on to him as hard as I could, practicaly laying on him, so he didn't get hurt, and his nurse gave him another dose of Morphine. After a while, he calmed down, and is sleeping again as I type this. The same thing happened after the first round of chemo was done and he was taken off the Morphine pump; it is extremely physically and emotionally draining to deal with, and I'm nervous about handling it at home.

Today Collin had his last combined session with physical and music therapy for a while. Despite being tired, he participated well, and seemed to enjoy himself. I will miss all of his therapists, and I think Collin will miss them too. It will be fun to come visit and have him walk in by himself!

Collin's red blood cell count was down, so he received another blood transfusion today. He has seemed more irritable and drowsy in the last few days, so hopefully the blood transfusion will help.

The nurse practitioner said that Collin's oncologist didn't feel the need to do another lumbar puncture just yet, as recommended by the ophthalmologist. She doesn't feel that it is likeley there would be new cancer cells present in the CSF where there were none before the two reounds of chemo, especially since the MRI showed a significant reduction in the visible cancer lesions. One of the attending physicians also feels there is a possibility that the new eye deviation could be a side effect of Vincristine, one of the chemo drugs.

Tonight I learned how to place an NG tube. If Collin's tube ever comes out at home, my knowing how to replace it could save us a trip to the clinic or ER. Bill wanted me to try inserting one in him, so our nurse talked me through the procedure. I got the tube about halfway in when Bill had me stop and remove the tube because he felt like he was going to gag. Then we tried a second time with the same result. Ahout an hour later, I tried on myself (I wanted to wait until I had digested my dinner!) I measured the length from my nose to my stomach, lubricated the tube, tucked my chin, and closed my eyes. Then I slowly fed the tube into my nose and down into my stomach. I got the tube all the way down, taped it in place, and checked to see if it was placed correctly by using a stethescope to listen for the "pop" when a syringe of air is pushed through the tube. Then I pushed a syringe full of water through the tube to see what Collin feels when liquids are pushed through the tube. The water was room temperature, but it felt cold as it went across my cheek, into my nose, and down my throat. I didn't feel the fluid go into my stomach. Then I went out to the nurse's station to show the nurses; they were very surprised I had done it. When I tried to speak to them though, the tube made me feel like I was going to gag, and I turned around and ran back to the room and pulled it out. I had wanted to leave it in for at least an hour to see what it feels like, so I could have a better understanding of some of what Collin has to go through, but I couldn't do it. The whole experience leaves me more in awe of Collin, and how he is handling everything. He's my little super hero!

Wednesday, June 23

This morning started out pretty normal; I got myself washed and dressed while Collin cried and threw a fit because I wasn't sitting right next to his bed (he can still see me the entire time as I don't leave the room in the twenty minutes it takes me to get ready for the day). His anger served him well this morning, because twice he pulled himself up to standing in the bed!

As we were eating breakfast, the nurse practitioner came in and told me the results of last night's MRI. There was no obvious increase in cranial pressure that would be causing the left eye deviation. The new blood that was at the surgical field a few weeks ago is significantly decreased. And, all of the spinal lesions are gone except one. I immediately burst into tears of joy when she told me that. I felt so encouraged that there was such a difference after only two rounds of chemo. I know we still have a long road ahead of us, with more chemo and recovery from the brain surgery, but knowing that the chemo is working will make the harder times still to come a bit easier to bear.

One of the neurosurgeons came by to tell me the MRI results as well. He said the ventricles in Collin's brain are plump, but have not increased in size at all. He said another lumbar puncture could be done to check the pressure, but before recommending the procedure, he wanted to have input from the ophthalmologist. The ophthalmologist finally saw Collin this evening. He dilated and examined Collin's eyes, and said he's not yet sure what is causing the increase in eye deviation. One possibility is just that the muscles that turn the eyes in are stronger than the muscles that turn the eyes out; another possibility is that there could be cancer cells in the CSF that are irritating the nerves. He is recommending a LP be done to check for the presence of cancer cells in the CSF. Now Collin will have to wear a patch on both eyes for two hours a day; we could patch the left eye on odd days, and the right eye on even days. The patch will help preserve his vision until the eye deviation corrects itself after further recovery from brain surgery, or until surgery can be done on the muscles behind the eyes to correct the problem.

This afternoon we got to go down to the rehab gym for physical therapy. Collin walked with the walker, worked on leaning while maintaining his balance, and standing from a sitting position. He did well, and enjoyed being out of the room. After therapy, the nurses from the home health agency showed us how to use the feeding pump, and explained how their services will work. The first few days at home will be a time of adjusting and organizing and scheduling all of Collin's care. Caring for Collin, meeting his needs, taking him to clinic appointments and therapy appointments, etc. will be a full time job, but I'm feeling more confident about handling it. It will be a challenge for me to let go of the other things at home that I would normally want to resume doing but won't have the time for just yet, like housecleaning, etc. and to ask others for help when I need it.

We finally got Collin out to see Holly the therapy dog tonight. I've been wanting to do this for the last 4 weeks; you'd be so surprised now difficult it can be to get one small boy out of a room and down the hall for just a few minutes. The last few times the therapy dog was here, Collin's counts were down and he couldn't leave the room, he was throwing up, having an X-Ray, or sleeping. But tonight we were able to make it happen, and both Neya and Collin enjoyed seeing Holly. Neya was proud to be able to give her three treats!

A video about Holly:

Tuesday, June 22

It was two months ago today that Collin had the MRI that diagnosed his brain tumor and was admitted to the hospital. In some ways it's hard to believe we've already been here two months, and in other ways it's hard to believe we've only been here two months. But to look back over the last two months, it's easy to see how far we've come.

Over the last few days we've noticed that Collin's left eye looks like it has turned in more, so now his eyes look more crossed than they had been. Yesterday a request was made for the ophthalmologist to come take a look and see whether patching the left eye could have made it lazier, but he never came. Last night, Collin was in a deep sleep, and he wasn't waking up every few hours, which is unusual for him. When I thought about that, coupled with the fact that his eye deviation could be related to increased cranial pressure, I asked his nurse if she could assess his neurological status. She checked his vital signs, checked his eyes reaction to light, woke him a bit and spoke to him to see if he reacted appropriately. He seemed fine, just very tired, so he went back to sleep, and then I did too.

This morning, a neurosurgery resident came to see Collin due to the eye deviation. The decision was made to do another MRI to rule out increased ICP as a cause for the change. It was tentatively scheduled for around 5 PM because Collin had to have no oral intake or tube feeds for approximately six hours before being sedated for the MRI. We took him down to radiology around 6:45 PM, and by 7 PM he was sedated and the scan was starting. They came for us at 9 PM when the MRI was finished, and we went with him to the PACU so he could wake up a bit. We were back in our room by around 9:45 PM. Collin was scheduled for an outpatient MRI next Wednesday June 30, of the head and spine, to see how his chemo has affected the cancer so far. They were able to scan the spine as well tonight, so he won't need the scan next Wednesday. It seemed fitting that the scan was done two months to the day after the first MRI was done. Hopefully we will know results early tomorrow morning.

This morning for physical therapy, since his blood counts are rising and he can safely leave his room, his therapist wanted to try having him walk with a walker so she could see if he'd need one when we go home. I got out his sneakers, and Collin was very excited when we put them on him. We took him out into the hallway, and I helped support him a bit as he held onto the walker and walked! Collin did a great job! It was amazing to me to see him just want to go, with no hesitation or complaint. He tired quickly, but he's so motivated that it won't be long before he's getting around on his own!

Two nurses from the home health care agency that will be helping us out at home stopped by today. They brought an IV pole for home, the feeding tube pump, and the feeding tube supplies we will need at home. They will be back tomorrow to teach me how to use everything. Tonight after we were back from the MRI, Collin's nurse walked me through the steps of setting up the tube feed and feeding pump, checking that the NG tube is still in the proper place, and administering medications through the tube. 

Friday, June 25, 2010

The last few days have been very busy. I'll get my blog entries caught up over the weekend!

Monday, June 21, 2010

Monday, June 21

Chemo Round 2, Day 14

Today Collin had his last dose of chemo in this second round of treatment. He started out the day by waking up a little earlier than usual. He was a bit fussy, and had some vomiting. He wasn't too eager for breakfast, but seemed a little more interested in eating at lunch. The speech therapist saw him at lunch time, but since his facial muscles are still weak and he doesn't have complete control over his lips and tongue, she is still not ready to advance him to new textures. For now he remains on a pureed diet, and takes sips of liquid best from a spoon. He continued to work on using his right hand and arm during occupational therapy.

Some of Collin's medications are being changed a bit to make them more manageable at home. His blood counts are beginning to rise, so it looks like we may be able to go home for a little while at the end of this week. We will have home nursing care to oversee his feeding tube and broviac care, and it looks like we may come back here for outpatient physical, occupational, and speech therapy as opposed to having a different agency provide these therapies at home. It seems like there won't be any time lapse by having outpatient therapy, while it may take some time to have the services start at home. We will also come into the outpatient oncology clinic two days a week. He has a three-hour outpatient MRI scheduled for Wednesday June 30, and then two days later may start his next round of chemo. Some of that round of chemo will be done at home; apparently we will be taught at the clinic how to administer the chemo ourselves. There will also be a shorter hospital admission over a few days for one of the drugs to be administered. Of course at the first sign of a fever at home, he will be readmitted to the hospital to be monitored and treated for infection. So even though we will be sleeping at home, it still seems like we'll be spending a lot of time at the hospital. I will probably still live out of a suitcase at home, so that I am prepared if we need to be readmitted to the hospital quickly. I wonder if I'll ever stop feeling the unsettled feeling that seems to be my constant state of mind?

I've really been struggling lately. It seems my plan to keep myself numb so that I could continue to function may be catching up with me. I am starting to feel sadness, fear and anger that is larger than life. I want what no one can give me-a guarantee that we're all going to survive this ordeal.

Sunday, June 20, 2010

Sunday, June 20

Chemo Round 2, Days 12 & 13

The weekend was quiet. On Saturday, Collin received another transfusion of packed red blood cells, and another transfusion of platelets. He is still receiving antibiotics to treat the infection he has. He had no major vomiting episodes, but he did have one very messy diaper. It was his first BM since Wednesday, and luckily he was sitting on my lap at the time, so I ended up wearing the mess. Oh well, into every mother's life a little poop will fall. At least I'm willing to bet his stomach felt better afterwards. Bill and Neya visited for a short time in the morning, and then they had to leave to get to Neya's make-up and hair appointments for her dance recital Saturday night. After the recital, they stopped by the hospital so I could see Neya all dressed in her recital outfit. She was so beautiful, and the sight of her brought tears to my eyes. She looked so grown up, and not once did she ask why I couldn't be there. She had so much fun, and said she wasn't nervous at all. I'm so proud of her, and I'm sorry I couldn't be there to see the recital in person. I'm looking forward to getting the dvd and watching it with her.

Today (Sunday), Bill and Neya spent the whole afternoon here, which was nice because I really missed them on the days they weren't able to be here because of recital practice. When they walked in this afternoon, Collin was so excited to see them (he always is). He enjoyed playing with Neya; while he was in the highchair after lunch, she gave him paper and colored pencils and tried to get him to draw. He seemed to enjoy himself. We talked about how she will be such a big helper when he comes home, and she was thinking of all the things she can help him do. Collin's counts are slowly starting to rise, and they are still talking about sending us home soon. I'm really looking forward to it, but I'm afraid to get too excited because the one thing that seems to be constant lately is that nothing ever goes quite as planned. So for now I'll be cautiously optimistic. I did my third broviac dressing change today, so that I can learn how to do them at home. I will prefer to have a nurse help me, but I think if it came down to it, I could do it on my own.

Overall, the weekend was boring, which is a good thing in the world of chemo. It was nice to spend Father's Day together, even if it was in the hospital.

Friday, June 18, 2010

Friday, June 18

Chemo Round 2, Day 11

Collin turned 18 months today. And he surprised all of us when it was obvious how much better he was feeling today then he did yesterday. We all thought he'd be feeling pretty bad for a few days, but today he was interested in eating (although he didn't eat much), he was out of bed and participated in physical therapy, etc. He threw up three times, but it was just the excess mucus, not the stomach contents like yesterday. As one of his doctors said today when he saw Collin, "He is one tough kid!" The blood culture that was done yesterday when he spiked a fever came back positive for an infection that is most likely a result of the mucositis. It is treated with one of the broad spectrum antibiotics that they automatically started him on when he developed the fever, so he'll stay on the antibiotic for ten days.

Collin's hemoglobin is still a little low, so he'll probably have another blood transfusion tomorrow. It should help perk him up even more.

Thursday, June 17, 2010

Thursday June 17

Chemo Round 2, Day 10

The side effects of this second round of chemo have finally caught up with Collin. He spent the whole day in bed, unable to tolerate any therapy, eating, etc. He started vomiting last night, then again this morning, and all day long. Now it's not just mucus, it's coming from his stomach. He has thrown up any meds that were given through his feeding tube, so everything that could be switched to IV administration instead of oral administration has been changed. His IV fluids have been increased, and the TPN (IV nutrition) has been restarted. Since he couldn't keep any oral meds down, his Methodone has been stopped and he's been put back on the Morphine pump. He is receiving three anti-emetic medications around the clock. He developed a fever today, so blood cultures were taken to test for infection, and he was started on two broad-spectrum antibiotics. He is also receiving the GCSF to increase his white blood cell production. I knew this was coming, but it doesn't make it any easier to handle. After seeing Collin make such amazing progress over the last few weeks, it's really hard to see him feeling so yucky, even though it will only last for a few days. I was very down today, and it was made worse by the fact that I didn't get to see Bill and Neya today because she had her dressed rehearsal for her dance recital this evening. The recital is Saturday, and I feel torn because I can't be in two places at once. I know Neya understands that I can't be there, but it's still disappointing to both of us. I miss my family.

Wednesday, June 16, 2010

Wednesday, June 16

Chemo Round 2, Day 9

I decided to climb into Collin's bed next to him last night, so both of us ended up sleeping all night for a change. I'm amazed that the nurse and the aide came in and leaned over me to do what they had to do in the middle of the night, and neither one of us woke up. It was also nice to get my feet up all night. My ankles have been swelling a lot, I think because I just stand on the hard floor all day, and I don't walk any distance. When I sleep on the window seat, Collin wakes up multiple times during the night, and I spend half the night sleeping in the rocking chair next to his bed trying to get him to stay asleep, but my feet aren't elevated enough for the swelling to go down when I do that. So I'll probably do the same thing tonight so that we both get enough rest.

Poor Collin started the day vomiting, and it continued intermittently through the day. His upper airway must be coated with mucus, so it gags him and makes him throw up, or it collects in his stomach and makes him throw up. I think the poor kiddo thinks vomiting is normal, because it doesn't seem to bother him. Tonight he was eating ice cream at dinner, and all of a sudden I heard him grind his teeth. I have learned that when he does that, usually it means he's about to vomit. I was talking to the nurse and nurse practitioner, and I picked up a disposable chuck pad, held it in front of Collin, caught the vomit, and kept right on talking. We laughed about how quickly I got the chuck in front of him, and how I didn't miss a beat of whatever it was I was saying. Once Collin was done, he just pointed to the ice cream, asking for more. I think if I were in his place I would have been so upset, but he and I have gotten so accustomed to the vomiting that it doesn't seem to slow us down much. I look forward to the time that vomiting is no longer a way of life for us!

Collin's ANC, or absolute neutrophil count, a measure of his immune system, was officially down to zero today. His hemoglobin and platelets were low as well, so he had another blood transfusion (packed red blood cells) today, and he will have a platelet transfusion tonight. These should help him feel a little perkier tomorrow. Despite probably feeling pretty yucky today because of his low counts, he still managed to sit up unassisted on the floor mat for a combined session of physical therapy and music therapy. Since he can now sit unassisted, his PT made a new goal for him to be able to reach without falling over, and today he leaned over a bunch of times to reach for different musical instruments without losing his balance. Then we walked on taking a few steps again. This afternoon he was eager to play with his Occupational Therapist, and did a good job of using both hands and following simple directions. After OT was over, I climbed into the bed next to him, and we took a short nap. When he woke up, he was pointing to the little fridge, so I asked if he wanted a drink. He conveyed that he did, so I put some apple juice in his sippy cup. He took a sip and then threw the cup at me, and became very upset. I asked if he wanted me to help him, and he pushed me away. Then it dawned on me. I got out the container of grape juice from the fridge and held up both juices. I asked if he wanted apple juice or grape juice, and he pointed to the grape juice. So I put that in the sippy cup instead, and he was happy. I thought it was great-he definitely knows what he wants, and manages to get his point across!

Tuesday, June 15, 2010

Tuesday, June 15

Chemo Round 2, Day 8

Collin had a great day today. During physical therapy, he sat unassisted on the floor mat for quite a length of time, and played with some toy cars. Then we helped him stand at a small bench to play with a puzzle. He still needs to be held up to stand, and his legs need to be supported so he doesn't hyper-extend his knees, but at the rate he's progressing, it won't be too long until he's standing. He's managed to get himself onto his knees holding onto the side rail in the bed twice in the last twenty-four hours. Now when I step away from the bed, it's not enough to just put up the side rail; I need to pull down the top plastic part of the bed so he can't topple out over the side rail. The physical therapist is starting to think about what equipment he may need when it's time to go home; she's going to work with him using a tiny walker, and will determine if he will need leg braces to prevent the hyper-extension of his knees. During occupational therapy, he threw the ball and is using his right hand more. Then he sat in the high chair and played with the talking book, turning the pages and pushing different buttons. The speech therapist fed him tiny bites of cookie, he enjoyed the treat. But he still has a very weak chew and has difficulty moving the food around in his mouth, so it works better if he can have a sip of liquid to help wash the food down. Today he was able to drink from a sippy cup without the valve in it. If he's reclined enough, he can hold the cup with two hands and drink by himself; in the high chair he needed more assistance because he sits straighter in it. I realized that when we go home, I'll probably have to puree his food so that he can continue to eat without choking. He was very enthusiastic about lunch today, but at dinner time he was fussy and kept pushing my hand away. I asked Neya to try feeding him, and he opened his mouth right away for her. She'll be a good helper when we're back home. The two of them enjoyed playing again tonight, and Collin tried to talk to Neya on the phone today. They really miss each other.

Collin still sounds really congested at times due to the mucositis, and every so often he gags on the mucus in his throat. He has c-diff again because his blood counts are way down and he barely has an immune system. He had a dose of Morphine this afternoon because his belly was hurting him; it was rumbling so loudly I didn't need a stethoscope to hear it. He may have been having cramping due to the c-diff. His tube feed will be increased to 20 ml/hr tonight since he tolerated 15 ml/hr well for the last few days.

Monday, June 14, 2010

Monday, June 14

Chemo Round 2, Day 7

I felt pretty down all day today. I envy everyone who is enjoying their summer, doing fun things with their families, taking vacations, etc. I miss waking up in my own bed, or being at home where no one is just walking in on me every fifteen minutes no matter what I'm doing (well OK, maybe since I have kids that's a pipe dream anyway, but at least it's just family walking in on me at home and I'm not in a fishbowl for everyone to see). I miss being able to get a simple cup of coffee for myself whenever I want it, without asking someone else to get it for me. I miss having some time to myself, to be able to read, answer email, do something relaxing, instead of just collapsing from ehxaustion at the end of the day. I miss watching Collin be able to walk around freely and play, instead of being tethered by the tubes that feed him and give him medicine. I miss getting him to sleep and not having someone come in and wake him eight minutes later so that I can just do it all over again when they leave, or not be able to get him back to sleep at all even though he really needs it. I'm angry that his (and Neya's) normal childhoods have been interrupted by this time we will never get back. I miss walking through my house instead of living in this room where the available floor space is not much bigger than my bathroom at home. And I feel guilty complaining, because being here is what has kept Collin alive. The nurses and doctors are wonderful and caring people. And as eager as I am to get home, in a bizzarre way I'm afraid to leave the hospital, away from all the extra help and care and eyes to make sure nothing is wrong. I just wanted to have a good cry today to let out my frustration, and I couldn't even do that in private. I don't want to be analyzed, or told to take a break, leave for a few hours, etc. It wouldn't do me any good anyway, because there's no way I wouldn't be worried and stressed the whole time. I just wanted to have a few minutes to feel what I was feeling, and let it out so I could move on.

I was also nervous about the IVIG infusion today. In the first round of chemo, Collin had a pretty scary reaction to the IVIG when it was given. Many precautions were taken today to prevent the same reaction (pre-medicating him with Tylenol and Benadryl, running it at a much slower rate), but the memory of the last experience had me feeling a bit scared. He didn't have any breathing problems this time, but his blood pressure went up enough that he was given a medication to bring it down. Luckily the infusion is finished, and he seems to be doing OK now. He fell asleep a little after 7:00 pm, and woke up a little after 8:00 pm and was very uncomfortable. I requested a dose of Morphine, and he's back asleep now. I hope he has a restful night, but his blood pressure will be checked hourly, so I'm not holding out too much hope that either one of us will get a lot of quality sleep.

Saturday & Sunday, June 12 & 13

Chemo Round 2, Days 5 & 6

The weekend was nice and quiet. I requested one dose of Morphine each night when Collin woke up and was uncomfortable, but each time he was able to calm down and get back to sleep after the dose was given. Since he can't tell me what is wrong, it's impossible to know what he's feeling, and although I'm never sure if the Morphine is what he needs, or the right thing to do, I just know he doesn't need to suffer, so that's how I make the decision. I worry about withdrawal, but I guess we'll cross that bridge if/when we get there. If it helps him calm down and seem more comfortable, I'm guessing it's what he needs.

Collin continued to be eager and enthusiastic about eating over the weekend. It's such a nice thing to see! He played with some toys, and enjoyed playing with Neya when she was here. I think his smile is getting a little bigger and more noticeable; I noticed Sunday that when he was laughing, he looked like he was laughing, as opposed to the more limited facial expression he had before.

It does seem thst the mucositis has started again. At times he sounds very junky when he's breathing, and when he vomits it's mostly mucus coming up. So far his mouth doesn't seem sore, but that may still come. The physician warned me that in the next few days Collin's interest in and ability to eat may decrease as the mucositis worsens.

Saturday, June 12, 2010

Friday, June 11

Chemo Round 2, Day 4

Today was another good day. Collin did have some intermittent vomiting, but nothing that lasted too long. He continued to enjoy eating and did so with no problems. He participated in his physical therapy and occupational therapy sessions with enthusiasm, exhibiting age-appropriate play, making his needs/wants known by pointing and making verbal sounds, and following requests appropriately. He has tired easily over the last few days, but I'm unsure as to whether it is due to the Risperdal (or other drug) or the chemo.

Collin woke up at 10:45 tonight and started crying and throwing himself around, arching his back, etc. I was unable to comfort him, so I requested a dose of Morphine for him. He was then able to calm down and go back to sleep. It's frustrating not to know what is causing him pain; it could be the blood in his brain, his jaw or limbs due to the chemo drugs, etc. At least he doesn't have to suffer once he has the Morphine.

The Patient Advocate came to see me today and listened to what I had to say about the neurologist. She also said that she can see that my letter of complaint gets to the proper people.

Friday, June 11, 2010

Thursday, June 10

Chemo Round 2, Day 3

Collin and I slept well last night. This morning when he woke up, Collin pushed himself up to a sitting position for the first time. He did it again this afternoon after a nap; the nurse and I watched him push himself up using his right arm! I was amazed! For breakfast, he ate some small pieces of scrambled egg, followed by yogurt to help him swallow the egg since he still can't coordinate his tongue to move the food to the back of his mouth to swallow. He did really well with it. At lunch, the speech therapist fed him mashed potatoes, and some pieces of macaroni and cheese. I held him on my lap while she sat across the little table and fed him. He used to love mashed potatoes, and today it was like the speech therapist couldn't feed him fast enough; he would take a bite, swallow, and point for more. Every so often he would turn and look at me with his little smile as if he was saying, "Look Mom, I'm eating! Mashed potatoes! Isn't it great?" The speech therapist ordered him a pureed diet and arranged for us to borrow a high chair, so at dinner time I put Collin in the high chair and fed him dinner: pureed cheese pizza, pureed brocolli, and pureed pears. He seemed to enjoy everything, although I didn't feed him much pizza, because I didn't think the tomato sauce would be too pleasant when it came back up (he's had some vomiting today because of the chemo, so I knew there was a good chance he wouldn't keep his dinner down). But despite the vomiting, he had definite interest in eating, which is a huge thing for him since he wasn't eating much in the time before he was hospitalized. I was so happy to see him enjoy food today! He also enjoyed playing with the musical instruments that the music therapist brought with her today, and didn't want to give back the shaker egg at the end of her session. He ended up falling asleep clutching the little yellow egg in his hand.

Collin underwent an eight hour EEG today. Once again, he sat still while his head was measured, marked, scrubbed with exfoliant, and the probes were glued to his head and taped to keep them in place. Then his head was wrapped in gauze to keep the probes on in the right place since they had to be on all day. He looked like he'd had another brain surgery. Not once during the day did he pick at the gauze that was wrapped around his head and under his chin. When everything was removed this evening, he cried a little as the tape was peeled off his head, and there were some little areas of brush burn from the exfoliant. I gave him a bath to get the glue off his head and freshen him up after vomiting.

The neurologist came into our room in the early evening to look at the EEG. When I heard he was coming, I thought about what I would say to him if he came in with the same attitude he had Tuesday. Well, he walked into the room with the nurse practitioner, and told me I'd have to leave so he could review the EEG. I was stunned. I looked at him and told him I wasn't going anywhere. He said he would be discussing things that wouldn't make sense to me and could be scary for me to hear, so I should leave. I said, "So I won't listen. I'm not leaving my son. I am his parent and I am not leaving. Besides, he'll get very upset if I leave." The man then said, "Well that's what we need so we can capture it on the EEG." Both the nurse practitioner and I told him it wouldn't be the same thing that happened Tuesday, and she tried to tell him there was no problem discussing anything in front of me. He disagreed, and told her he'd have to talk to her out in the hall. As he left the room, I said, "Excuse me, do you have children?" He said "Yes" and walked out. I stood next to Collin's bed, and suddenly felt very cold and started to shake. I was FURIOUS. After a few minutes, I went into the hall and told him I'd like him to come back into the room when he was done. He finally returned, and I said to him, "As a parent, I hope you never have to watch your child go through what I have watched mine go through for the last month and a half and be treated as rudely as you've treated us." He yelled, "What do you mean? This is why I didn't want to discuss anything with you here, because I knew you wouldn't understand!" I told him how he came in Tuesday night with an attitude that conveyed that he felt we were wasting his time, and after looking at Collin for thirty seconds, declared, "This isn't a seizure, is is a kid who is unhappy" like he was having a tantrum or something, and then left. He started yelling at me that I had no idea how much time he had spent trying to help my son, and he wasn't looking for thanks, blah blah blah. I interrupted him and told him he wasn't hearing me. I explained how the neurosurgeon had been asked something, and how he was able answer courteously and professionally, which was not how this man behaved. He continued to rant that I had no idea what I was talking about, and left. When the nurse practitioner came back, I told her I wanted him off Collin's case; she said he was going to be on a different rotation after tomorrow, so he wouldn't be back. She told me how angry he made her as well, and that she had tried to defend me to him in the hall too. I decided I would be writing a letter of complaint about him, because if he disregards some other child who is in pain the way he disregarded Collin, it could be dangerous. Honestly, he belongs in a room doing research, not interacting with human beings, especially children...and he's a pediatric neurologist!

Wednesday, June 9, 2010

Wednesday, June 9

Chemo Round 2, Days 1 & 2

Tonight I am updating for the last two days. Yesterday, Tuesday, was a rough day to say the least. Collin didn't have a restful night Monday night as I had hoped he would. I was hoping our nurse's theory about the Reglan would turn out to be the answer to what was causing the periods of incosolable agitation Collin was having, but Monday night he was awake a lot, despite three doses of Ativan and a dose of Morphine, and no Reglan. Collin looked completely exhausted all day Tuesday, but wasn't able to rest much. He did finally fall asleep for a few hours after lunch. During that time, I read a little bit about some of the drugs he was on, trying to figure out what could be bothering him. Thinking about the whole situation, and how the solution to these episodes was just to give him more drugs, some of which were recommended by a doctor that never even met Collin, and how every day changes were made based on discussions about my child that I was not a part of, I became very angry, and decided that as his parent, I had the right to deny any changes unless the reasons, possible side effects, etc. were discussed with me in detail first. I may not have an MD behind my name, but I am just as important a member of Collin's care team as any of his doctors and nurses, and I was tired of feeling like a bystander. I was frustrated that often there were multiple changes made in his care at a time, and was at a loss as to how we would ever figure out what the problem was with so many ever changing variables. I was also tired of being the one who had to deal with the hours of agitation long after the people making the decisions had gone home. I think the sleep deprivation finally caught up to me. My mom came in at lunch time, and I was in tears from exhaustion, fear about what Collin was enduring, and anger. When the attending physician came in, we told him all about what I was feeling, and that I was ready to take Collin and leave. We ended up spending over an hour talking to this poor man who I had just met the day before, and he asked lots of questions and went through a time line of information trying to figure out a cause for the episodes of agitation. He was going to do his best to get to the bottom of what was going on.

Soon after we were finished talking to the doctor, Collin woke up from his nap. Within a very short time of waking up, he started crying and screaming and rolling around in pain. No matter what I did, I could not console or calm him. He would reach for my hand, and then push it away as if it hurt to be touched. We ended up with two attending physicians, a fellow, and the nurse practitioner in the room during the episode. The episode lasted for over THREE hours. This poor child, who was exhausted to begin with, could not stop screaming in pain, despite being given Benadryl and Ativan that should have calmed him down. A dose of Morphine didn't help either. As the time wore on, I watched hopelessly and in anger as my child suffered and I wasn't able to help him, and no one seemed to know what to do. My Mom and a friend demanded that they figure someting out and come up with a plan, because there was no way this could go on. The doctors wondered if it was some sort of seizure, and called a neurologist to see Collin. This man was the rudest doctor I have ever met. He came in, took one look at Collin, and said with an attitude that conveyed that we were wasting his time, "This isn't a seizure, this is a kid who is unhappy," and walked out. I have never seen such a horrible bedside manner in my entire life. Collin's doctors then gave him another dose of Morphine, and he started to calm down. I tried to get him to sleep, but he still couldn't fall asleep. My Mom again pushed them to come up with a plan so that I wasn't left hanging if this happened again in the middle of the night. They decided to have a CT scan done to make sure that hydrocephalus wasn't the cause, so we went down to the ER (with his IV pole holding his chemo drugs being pushed along side him) at 8 pm for the scan. Afterwards, when the results were available, we were told there was no increase in cranial pressure that would be causing Collin pain. They ordered a higher dose of Morphine that I could ask for over night if Collin need it; I decided to have the nurse give the Morphine every two hours through out the night so that Collin could rest instead of taking the chance that he might wake up in pain. I finally got him to sleep, and after taking a shower, I went to sleep too. An hour or so later, Collin woke up when the nurse was changing his diaper that had leaked, so when she was done I climbed into his bed next to him, and we both went back to sleep. For the rest of the night, when the nurse had to give Collin meds, take his vitals, change his diaper, etc., she had to lean over me to do so, and not once did I even know she was there, that's how exhausted I was.

Collin had his last dose of Morphine at six o'clock this morning. He woke up a half hour later, and was his normal self; he nursed, wanted to play, etc. He ate some baby food for breakfast, and took a morning nap. His doctors and nurse practitioner came (at seperate times, and then together later in the day) to discuss different ideas about what may be causing Collin pain, and what the plan would be to figure out the cause. One theory is that the Methodone might be causing the rare side effect of increased intercranial pressure that may not show up on a scan; at this point rare means nothing to me since the brain tumor was also rare (and as I type that statement, I still cannot wrap my head around the fact that my child had a brain tumor!). Another theory is still Morphine withdrawal, since it took a higher dose of Morphine to calm him down. Another possibility is still seizure activity; we all felt that during the episode yesterday, before the Ativan was given, Collin was in such a state that he could not even acknowlege that we were there, but after the Ativan was given, he could focus on us even though he still was unable to calm down, and Ativan can stop a seizure. Unfortunately the rude neurologist was called after the Ativan was given, so he didn't see that piece of the episode. The fourth possibility was still the area of blood that the MRI last week had shown was present. Collin's neurosurgeon reiterated that based on the scan from yesterday and the MRI from last week, there was no indication of a large increase in intercranial pressure; however yesterday's scan did show that the area of blood at the surgical site that was on last week's MRI was new blood, which supported the theory that the blood thinner used during the stem cell collection (which was done the day before these episodes started) may have caused some bleeding in his brain. The neurosurgeon said it was possible that the blood could have been causing horrendous headaches similar to a meningitis headache, which will often cause kids to arch their back and neck, which Collin was doing during the episodes. The blood will eventually be reabsorbed, but in the meantime the pain can be treated with Morphine. If there is another episode, a lumbar puncture can be done to test the CSF pressure to see if there is an increase in pressure that is too small to show up on a scan, although this would be unlikely. In trying not to make more than one change at a time so that it is easier to tell whether something works or not, we decided not to make any changes in medication today, although we may want to take Collin off the Methodone soon to see if it helps. If he has another episode, we can give him Morphine right away to treat pain. If it is a seizure, Morphine won't help, and then we can have a neurologist evaluate him again before Ativan is given which could change some of the symptoms. To try to see if there is any unusual brain activity that may indicate seizure activity, an EEG, or electroencephalogram was ordered (apparently much to the annoyance of the neurologist). Since Collin doesn't flinch when his belly is pressed on, and the fact that he has so much interest in eating, it is unlikely that the pain is related to any GI issues.

The EEG was done early this afternoon. Collin was an angel as his head was measured, marked, scrubbed clean, and 27 little electrodes were glued, pushed, and then taped onto his head. Then he nursed and slept for the half hour procedure. For the last five minutes, we had to wake him up so a strobe light could be shined on him to see if there was any epileptic activity. Later, we were told that although the EEG was not normal, it did not show any seizure activity. It is not unexpected or concerning that it was not totally normal, since his brain is still recovering from surgery. But, just to be sure, Collin will have an eight-hour long EEG tomorrow, which should be interesting. At this point, my gut tells me the new blood at the surgical site is the cause of the pain, especially since the onset of these episodes was the day or two after the stem cell collection, but sometimes the only way to determine the cause of pain (especially in someone who cannot tell us where it hurts) is to rule everything else out.

This afternoon, the Speech Therapist tried some "dry crunchies" with Collin. She gave him tiny little pieces of graham cracker, which dissolves quickly. He immediately picked the pieces up, put them in his mouth, and chewed. He still has some difficulty moving the food with his tongue to the back of the mouth where it can be swallowed, but to help this along, she followed each tiny piece of graham cracker with a spoonful of pudding. He did very well, and ate with enthusiasm. It is so nice to see that since it has been a few months since he's been able to eat anything himself. He did get one piece of cookie stuck in his throat, which caused him to gag and vomit, but the Speech Therapist said that is normal, and his cough was good and strong and protected his airway, so she wasn't concerned. She gave me the go-ahead to try mashing some foods (noodles, banana, etc.) with a fork and offering them to Collin. Unfortunately, we didn't get to try that tonight because he had a few more episodes of vomiting, probably due to his chemo.

Collin is sleeping peacefully once again. Dare I say I hope it continues through the night?

Monday, June 7, 2010

Monday, June 7

Chemo Round 2, Day 0

So last night wasn't as calm as I had hoped it would be. Very early this morning, Collin woke up crying and was inconsolable. We gave him Simethicone to see if he had gas, but it didn't help calm him down, so he got another dose of Morphine. I sat with him while I waited to see if the Morpine would help; after a while, he was able to get back to sleep. I had pulled the rocker next to his bed, and fell asleep sitting in the rocker with my head on the mattress.

This morning Collin had another episode of inconsolable agitation. His nurse gave him a dose of Ativan, which did a nice job of calming him down. He went on to have a good morning, trying to talk, interacting with others, and even sitting unsupported for short times during his physical therapy session. After PT he looked so tired, but didn't go to sleep. At lunch, he kept pointing to my lunch tray, and it seemed like he wanted to eat regular food instead of the baby food I offered. After lunch I nursed him and we both fell asleep for a little while. Since he was sleeping, OT and ST said they'd see him tomorrow.

This afternoon, Collin suddenly started another episode of inconsolable agitation. While he was in the midst of it, the attending physician and the fellow came in on rounds and saw the state Collin was in. They immediately tried to brainstorm to see if there was anything we were missing that could be causing him to behave that way. Then his nurse suggested that it might be the Reglan; at least the last three episodes coincided with the Reglan dose times. So the doctors decided to give him Ativan to calm him, and they stayed to watch and see if he was able to calm down. In just a few minutes after the Ativan was given, Collin was calm, trying to talk and interact more, like nothing had just happened. So the decision was made to hold the Reglan to see if these episodes can be avoided. Then the doctors took the time to come up with a plan in case he had another episode tonight even though he wouldn't be getting Reglan. I really appreciated the fact that they stayed for so long and really tried to come up with a plan; I finally felt like they heard me and recognized that this behavior wasn't normal. If it turns out not to have anything to do with the Reglan, Collin will be put on a regularly scheduled dose of Ativan to help keep him calm, and we will continue to try to figure out what the cause of the agitation is. It's so hard since Collin can't just tell us what the problem is, and it is very distressing to see him in such a state.

Collin received the first two chemo drugs of this round starting at 5:00 this evening. The Vincristine was just a syringe pushed into his IV line, and the Cisplatin was hung on the IV around 5:30 and should finish around 11:30 tonight. Normally Collin would have been pre-medicated with Benadryl and Reglan along with Zofran to keep him from vomiting, but since the Ativan can help with nausea, we'll see how he does. Tonight Collin looked exhausted, but wasn't able to get to sleep as easily as he did the last few nights. He was fussing and instead of calming down, it started to escalate, so a dose of Ativan was given. It took a while, but he's sleeping peacefully now, so I'm hoping it's a restful night.

Sunday, June 6, 2010

Sunday, June 6

Note: I am finally updating after a long week. I have just posted the entries for the last 6 days.

The second half of last night wasn't as calm. Collin threw up some formula twice, and then later seemed very uncomfortable again. Nothing seemed to help, so a dose of Morphine was given. He finally fell back to sleep. In the middle of the morning, after another period of being uncomfortable, crying, rolling all over his bed, etc., he finally pooped. I'll spare you the details; let's just say I'm sure it was painful. But finally after that he seemed a lot more comfortable. I was relieved because the chemo drugs can be very constipating, so for him to start round two that way would have been worrisome. The day was calm and relaxed, and Collin seemed pretty drowsy. A nurse told me that once his body gets more used to the Risperdal, he'll get the benefit of being calmer without being so drowsy, which seems ideal.

We tried going for another stroll around the hospital, but Collin became a bit fussy, so we came back to the room. He dozed for a bit, but then had fun playing with his sister. He had another episode where he seemed uncomfortable, but he was given Simethicone to help with gas, and he seemed to calm down almost instantly. He's now sleeping very peacefully, so I hope he stays that way all night. It was a rough week, so it was nice to have a calmer weekend before round two of chemo starts tomorrow.

Saturday, June 5

Today was a quiet day. Collin slept well last night and woke up calmly this morning. He still seemed somewhat drowsy most of the day. My Mom and I took him for a nice long walk around the inside of the hospital. We took him out into a courtyard for a few minutes, but he didn't seem to like being outside. He started to fuss and was rubbing the top of his head. It was cloudy and shaded where we were, so there wasn't warm sun beating down on him. There was a slight breeze, and we wondered if the breeze just felt different since he has no hair. Maybe the light was too bright for him compared to the inside lighting. It's hard to know since he can't tell us. At lunch, Collin ate a half jar of babyfood applesauce and half of a snack cup of pudding. At dinner, he finished the applesauce. He had no problems with swallowing. Our pediatrician stopped in to see how Collin was doing, and couldn't get over how much he's improved since his visit a few weeks ago. He watched Collin throw a ball, try to talk, give high fives, and eat babyfood. In the evening, Collin seemed uncomfortable; he still hadn't pooped, and his stomach seemed to hurt. He was given another dose of laxative and Morphine. He was then able to go to sleep.

Friday, June 4

Collin slept well Thursday night, and went back to sleep pretty easily at 5:00 this morning after labs and vitals were done. At 6:30, he woke up in a happier mood than the last few days, at least until I left his side to get dressed and ready for the day. I didn't leave the room, but he was very upset anyway. At least I know that behavior is normal. He nursed when I took him out of bed, and then I got him to eat some baby food bananas and have a few sips of apple juice from a spoon. Then I dressed him in real clothes for the first time since he was admitted to the hospital. It was fun to see how surprised everyone was to see him looking different!

The neurosurgeon came by and said he had no concerns about the MRI. He didn't think the blood at the surgical site was new; he felt that the agitation was due to Morphine withdrawal. He also said the ventricles in Collin's brain were smaller, which is good; things are getting back to normal in his brain and the CSF is draining properly. I never thought I'd reach a point where I wasn't constantly worried about hydrocephalus, but this time I hadn't was a big step for me!

The Risperdal seemed to be working; Collin was much calmer. We still had to play with the dose, because unfortunately he spent most of Friday very drowsy. I want him to be calm, but not so zonked that he can't participate in therapies. We went down to the rehab floor for physical therapy, but Collin was too drowsy to participate for long. Later he did play with the Occupational Therapist for a few minutes, but was still drowsy. The decision was made to keep the dose of Risperdal at .2 mg at night, but changed to .1 mg during the next day to see if he'd be less drowsy.

His oncologist spoke to us again about repeating the first round of chemo. She asked if I'd want to start over the weekend, or just wait until Monday. I said that as long as it wouldn't harm Collin, I'd like to wait until Monday; that way we could get out of the room a few more times before his counts go back down and we have to keep him in his room. She agreed, and said she'd like to give him the weekend to get back to his normal self. So round two of chemo will start on Monday.

In the late afternoon/early evening, the first bolus feed was started through the new feeding tube. Not long after it began, Collin was crying and very uncomfortable. The feeding was put on hold, and pretty quickly afterwards, Collin calmed down. I discussed the quantity of the feed with the nurse practitioner. She explained that nutritionally, Collin needs around a liter of "formula" per day. They wanted to give him 14 hours of continuous feed at a rate of about 40 ml/hr, and three bolus feeds at a rate of 50 ml/hr. That seemed awfully high to me considering the fact that the week before, Collin had two days of vomiting that coincided with raising his continous feeding to 30 ml/hr. So she changed the feed to a continuous 16 hour rate of 35 ml/hr and two bolus feeds of 40 ml/hr. It still seemed high to me, and sure enough, Collin didn't tolerate the bolus feed when it was restarted at the "lower" rate. He was again crying in pain. At that point one of the doctors walked in, and I told him I thought the whole process was counterproductive. He agreed, and said that in a few days when the chemo starts again, the feeds would be stopped for a while anyway because no one feels like eating when the chemo makes you sick. So he dropped Collin back down to 35 ml/hr continuously for sixteen hours a day. Collin still seemed like he was in pain, so a dose of Morphine was given, along with a lower dose of Reglan, which helps empty the stomach faster. We hoped it might help him have a bm as well. Another laxative, this time Cenokot, was also given, along with Simethicone for gas. Finally, Collin was able to go to sleep.

There were some big thunderstorms on Friday evening. Early in the evening, I was able to capture this picture of a rainbow outside of our room.

Thursday, June 3

The next morning, at 6:00 am, a neurosurgery resident came to check the back of Collin's head because of the agitation. I told him he could do so only if he could do it without waking Collin up. Luckily, he didn't wake him. I told him my gut wasn't telling me the agitation was from hydrocephalus this time because there were no other neurological signs, but maybe it should be checked anyway. He said he would discuss it with the neurosurgeon. Then at 6:50, the door to our room opened, and I heard something being pushed through the door and banged into the wall. Collin picked his head up, and I was furious. A lady pulled back the curtain, and started to push a cart into the room. I stood up and said, "What are you doing?!" She said she was the audiologist and was there to do a hearing evaluation. "At 7:00 in the morning?!!" She told me she wanted to do the eval while Collin was asleep. I said, "Well he's not now!!" Then I mumbled that I was glad I hadn't been getting dressed, because that was normally the time I am getting myself ready for the day; I think the lack of privacy at all hours of the day and night finally got to me. For the hearing eval that was done before the first round of chemo, we had to go all the way across the hospital to a connected building to the audiologist's office because they said there was too much noise in the room to do it at his bedside; now they were coming to the room to do this one. It didn't make sense to me. She explained that it was important to monitor his hearing between rounds of chemo; I told her I understood that perfectly, and that I was sorry to take my frustration out on her, but that we had had a rough few days with not much rest, and I was tired of Collin being woken up all the time. She sympathized, and apologized again. She did the hearing eval, and got the same results as the last eval; no problems with the left ear, but she couldn't get a good read on his right ear, which she felt was probably due to fluid in the ear.

Now that Collin was awake, the restlessness and agitation started up again in full force. He was given another dose of Ativan. I showed the video of him the night before to the nurse practitioner, and she realized that the agitation I had been seeing for the last few days was not normal. Then his oncologist observed it first hand, and she decided to have another MRI done to see if the agitation was due to any new tumor growth; if the MRI showed nothing, she would talk to the psychiatrist about starting another drug to help get him through Morphine withdrawal. She also had another X-Ray done of his belly to make sure he didn't have an obstruction or anything else that was preventing him from having a bowel movement, since he hadn't had one in a few days. The MRI was scheduled for 1:00 pm. All morning my Mom and I watched Collin cry and thrash in agony; I told her it was like he was trying to crawl out of his skin. Words can't describe how agonizing and heartbreaking it was to see him suffering like that, and I was angry that it had taken so long to convince everyone that it wasn't just frustration that I didn't want to deal with, but that rather something was really not right. I even (only half jokingly!) invited the nurse practitioner and doctors to spend the night with us so they could have a turn helping Collin get to sleep.

On Wednesday, the decision had been made to pull the feeding tube up into the stomach from the intestine and make it an NG tube. The goal was to normalize feeding a litle bit; he could have some continuous feeding overnight, but then during the day be given 3 bolus feeds, that would take about an hour each, more like a breakfast, lunch, and dinner schedule. That way he could be disconnected from the pump at times during the day, and he may also be hungry enough to try eating orally. We decided that while Collin was sedated for the MRI to have the whole tube changed, because an NG tube is usually a little wider to allow the bolus feedings to go more quickly. At least we could spare him the discomfort of changing the tube while he was awake.

After the MRI, the oncologist came in to tell us that it showed no new tumor growth, which was a relief. She said it did show some blood at the surgical site; it was impossible to tell if the blood was old or new without doing a CT scan, but either way the blood would eventually reabsorb. If the blood was new, she thought it may have been possible that the Heparin (a blood thinner) that had been used during the stem cell collection to keep the IVs from clogging may have caused a slight bleed. The X-Ray showed no problems with his stomach. She then started Collin on Risperdal, a psychotropic drug that can help with Morphine withdrawal.

That evening Collin had two poopy diapers; he fussed a lot and seemed uncomfortable, and it didn't seem like the stool softener he had been getting really helped much. He also had the first dose of Risperdal. I nursed him to sleep (over the last few days he suddenly became much better at latching on properly and nursing more normally!) and held him for a while; it was so nice to finally see him peaceful again after three days. While I was holding him, there was a thunder storm, and afterwards when I looked out the window, I saw a rainbow. When I put him in bed, he woke up and was agitated again; the nurse went to get a dose of Morphine, but by the time she returned, he was asleep again, so she held the dose. I was so incredibly tired and drained myself that I again just collapsed into bed.

Wednesday, June 2

Collin woke up very agitated again Wednesday morning, and again needed a dose of Ativan. He was taken off the Morphine pump a few days before, and was instead given Morphine at regularly scheduled intervals. His oncologist wondered if his agitation could be due to withdrawal from the Morphine, and switched him to Methodone, which is a much longer acting pain medication than the Morphine.

There are a few therapy dogs that come to visit the kids in the hospital; they take turns coming every Wednesday in the early evening. The dogs are not allowed in the heme/onc wing because the wing has it's own special filtration system, but if the kids in the wing are healthy enough, they can go out to the central area where the dogs are allowed. I had asked about getting Collin out to see the dog; since his counts were high, he would be allowed to leave the unit for a little while. So Wednesday, Collin was disconnected from his IVs and feeding tube a few times, so we were able to take a walk around the hospital, go sit outside for a few minutes, and go to the third floor to see the rehab gym. It was a nice change from being in our small room all day. I hoped the day would be fun, but unfortunately Collin continued to have episodes of agitation and restlessness throughout the day. Some were understandable, like when he was wearing the eye patch. There were occasional times he could be distracted or redirected for a few minutes, but the underlying agitation continued throughout the day. It wasn't normal for him, and I wondered if he was overstimulated by getting out of the room. He was only able to sleep for about 40 minutes after lunch, even though he looked exhausted. His oncologist felt that since he's not in his normal environment, and is constantly being bothered by noises, people coming in and out of the room to do vital signs, give medications, etc. that it's not unusual to need help getting to sleep. She said he could have some Benadryl before bed. So he had Benadryl around 5:30 pm and fell asleep. I was glad he was finally asleep, but disappointed because there was no way I was going to wake him up to take him to see the therapy dog. But he was awake within an hour, and unable to get back to sleep. Eventually a dose of Ativan was given, but even then he couldn't get to sleep. He couldn't be still, and he was moving so much I was unable to continue holding him, so I put him in his bed. He continued to move and turn all around the bed, getting the feeding tube and IV lines tangled into knots and wrapped all around himself; he even managed to get one of the IV lines disconnected. I honestly felt like taking scissors and just cutting all the lines off. I grabbed the camera, and took two videos of him thrashing around the bed, hitting his head on the side rail, etc. to show the doctors in the morning. In tears, I picked Collin up again to try to comfort him, and finally demanded to see the covering doctor. Of course the resident that came has never seen Collin before, but he spoke to Collin's oncologist on the phone. He came back, gave me a few options, and asked if I wanted him to stop the Methodone and restarted the Morphine pump. I thought about it and then said, "I don't know, I'm not the expert!" So he made a few decisions like putting the tube feed on hold to see if Collin's belly was bothering him, and keeping the Methodone for the time being. Collin finally passed out from exhaustion. A few minutes later, the respiratory therapist came in. I told him nicely that I wanted to skip the breathing treatment that night, unless he wanted to spend his next two hours putting Collin back to sleep. He said, "No, I'm past that stage, my kids are older." I said, "So you can appreciate my frustration!" He said he could, told me I could do the breathing treatment when Collin woke up, and wished me a good night. I finally got Collin into his bed, and collapsed from exhaustion myself.

Tuesday, June 1

Since Collin can't tell me what is wrong, one of the ways we try to figure out if he's in pain is how he responds to me. I'm told that I read Collin well, and I do feel that we have a strong bond. If I stay calm, and am reassuring to him, he can be calmed down for many procedures. He has become very good at participating in his respiratory treatments, having his vital signs taken, even having the dressing over his Broviac changed, which is not the quickest procedure. But I just hold his hand and talk to him, and he lays very still for the whole thing (at least he has so far; now that I've said this, he'll make a liar out of me!) If I absolutely cannot calm Collin down when he is upset, it tells me that something is truly not right with him.

Monday night, it was very difficult to get Collin to relax and go to sleep. He was exhausted, and he desperately needed sleep, so when a dose of Morphine didn't calm him down, I agreed to a dose of Ativan for him. I hated resorting to giving him a drug to make him sleep, but it was the only way we could get him to rest. Then he woke up Tuesday morning at 3:45. He was very agitated again, and nothing I did seemed to help. Again we tried Morphine, but it didn't help, so again we tried the Ativan. At least after that I could actually get him to calm down. I took a small dose of Ativan twice to help me sleep after my brother died, and I hated the way it made me feel, so I stopped taking it. If it makes Collin feel the same way it made me feel, it's not something I want to have to give him; I think it makes him look kind of glassy-eyed and not all there.

Collin needed another blood transfusion Tuesday morning, because despite the transfusion on Monday, his numbers were still low. Perhaps that was another reason he didn't seem to feel quite right. He was restless, so I was trying to play a little bit with him; I took out the floor mat that his physical therapist had brought to his room, and tried playing with him on the floor. The Child Life department had brought us some paper and TaDoodles Crayons, so we tried playing with them. Collin had never used them before, and he had a hard time holding them in his left hand the correct way. But every time I tried to help him, he became very frustrated. So, I sat and very slowly used one of the Crayons to doodle on the paper, and Collin watched me. Then he used his right hand to try to turn the crayon the correct way in his left hand, and then he started to draw. I was so amazed that he took the time to observe what I was doing and then tried to correct how he was doing it! So he made his first drawing Tuesday morning. This only lasted a few minutes though, and then he was agitated again. I told one of the nurses that this kind of behavior wasn't normal for him, but she said he was probably just frustrated. Then his physical therapist came, but he was too tired and agitated, and wasn't able to participate well.

That afternoon, he did participate in his Speech Therapy session. The therapist offered him some of my milk on a spoon, and then transitioned to applesauce, which he hadn't wanted to try up until that point. He did great with it, and had no difficulties swallowing. The speech therapist gave me the OK to feed him whenever I wanted; she said I could even offer him some Spaghettios. Collin tired quickly though, so after Speech Therapy, I put him back into bed. His Occupational Therapist came a little while later and played with Collin in his bed for a few minutes. The Music Therapist also stopped by, and played her guitar and sang softly for him; he responded very well, and seemed to relax while she was there.

Later in the day, I had to put the eye patch on Collin. Again the eye patch frustrated him, and he cried and fought the whole two hours. I had been saving the eye patch for the afternoon because I didn't want it to interfere with his therapies; however I began to wonder if therapy would be a good distraction for him while he was wearing the patch.

That evening I tried feeding Collin Spaghettios like his Speech Therapist had suggested. He seemed to enjoy them, but he also seemed to have trouble moving the noodles to the back of his mouth so he could swallow them. He gagged on one, so I ended that feeding. We can try again soon; I see improvements in Collin every day, and he had much better luck nursing today than he's had for a while.

Tuesday night Collin was unable to settle down and go to sleep again. He became too difficult to hold because he couldn't stay still, and I didn't want to drop him. I put him in his bed, and he fussed and rolled and writhed all around, tangling up his tubes and bumping his head on the side rails. I had to call Bill and have him come sit with Collin just so I could take a shower, because he wasn't safe to leave alone. Finally at 9:00 pm, he got his medications (that had been due at 8:00 pm) including Morphine, and Ativan. He finally relaxed and went to sleep.

Wednesday, June 2, 2010

Wednesday, June 2

Yesterday and today have been really long, busy, and frustrating, with moments of happiness and joy sprinkled in. I am exhausted, and so I'm heading to bed. I'll update as soon as I can...