Little T just rolled from front to back all by himself!! He looked so pleased and proud! All this feeding really helps him gain muscle mass.
Tuesday, May 31, 2005
Of course now that Little T has regular OT for his arm, I want to work on the next issue: getting feeding therapy for Little T. His lack of eating looms large, a cloud of grief and frustration that hangs over my head every day. In fairy tales, people would die from grief by not eating. And in my darkest moments, I wonder if his lack of eating means he wants to die. Intellectually I know that he's actually getting all the nutrition he needs via tube and he has large reserves of fat. He also smiles and laughs more than ever, and his arm is shrinking every day. But I still mourn the fact that he no longer breastfeeds.
Perhaps I just feel safer to grieve now that he appears to be getting better. Because thinking about his lack of eating often pulls me back to the first day of his life when I got the worst call of my life: a resident called and said that they needed to cut open his left arm, because he had Compartment Syndrome so badly that the nerves in his hand were being crushed. I knew with a certainty that if he had this operation, he would start bleeding to death. I saw it very clearly. His massive vascular tumour of 24cm barely contained under taut skin would simply burst like a water balloon. Blood would start flowing out uncontrollably. But even knowing this, I agreed to the operation. The resident was very insistent that Little T "needed the operation or he wouldn't make it."
C had just left so I could rest. I had just given birth to Little T and I was all alone in the hospital room and I couldn't leave. I called C and all I could convey to him was that I thought Little T was going to die and that he must rush to the children's hospital. I waited and waited for news that he was gone. But at the very last moment, Chang the attending doctor was consulted. They considered the operation an emergency, so had started the process without him. Miraculously the attending decided Little T didn't need the operation and that his left hand did have some circulation and Little T was saved.
Months later, I told Dr. Chang that he saved Little T's life. He replied that no he would have cut off his arm. He had the certainty of someone who has never lost a patient in this way. But to this day, I have the certainty that he would have died. And now after all that has happened, I would have listened to myself even though it sounded crazy and simply refused to allow the operation. I do believe life consists of a series of lessons. Follow your instincts: this journey with Little T has taught me/is teaching me.
But right now I find it hard to separate grief from instincts. All I know is that we need help to sort out whether Little T has treatable medical issues with eating, or he just feels nauseated from the chemo, so he just chooses not to eat.
Monday, May 30, 2005
C was able to see Special K at gymnastics for the first time. Special K is 50th percentile in height, but 25th percentile in weight. She just turned 3 last month and the class is for 3 year old and up, so she's one of the younger kids. Though most of the classes are filled with girls, for some reason, in her class, there's 3 boys and Special K. Next to the gym equipment and the older boys, she looks tiny and slim, a good gymnast I suppose. Except that she's only taken 4 classes so far. Still she tries to do everything with a plucky happy spirit that I find utterly endearing. She can now execute a forward roll on an incline, walk along the uneven bars, jump on the trampoline in a somewhat organized fashion and climb a ladder. When she jumps around, she laughs. I love watching her and so did C.
Then we went to one of Special K's friends birthday party. We all had a lot fun doing our favourite things -- talking for all of us and Special K got Craig to read her several stories. Then she stood in the paddly pool and scooped up water and watered the jasmine.
At 7:3opm we received a call from P, Little T's new Occupational Therapist, who's provided by Early Start. P asked to come over then and there. So Little T had a therapy session. P specialises in hand therapy, so he emphasized Little T using his left arm. We didn't know that Little T could hold anything with his left arm, but you can tuck a stuffed animal under that arm. How sweet! We'll do that more. It's such a huge relief after months of trying to get an OT to finally have one and as an added bonus, an OT with many years experience in hand therapy.
As usual, our lives are filled with blessings in disguise. I was pretty crushed when I heard that the usual Early Start agency in our area had a long waiting list, but if it hadn't, we wouldn't have been able to get P. Or at least not for free.
Sunday, May 29, 2005
Little T demonstrated his latest trick twice yesterday. He can use his newfound dexterity to yank out his NG tube, even though it's taped close to his face. We keep trying different techniques and he figures them out and yanks it out again. Then he gazes up at us with a huge triumphant grin. Often I want to smile back at him and cheer "Good for you! Nothing wrong with your brain!"
Perhaps in revenge for its ill treatment, his tube tried to strangle him last night. I woke to his feeding pump beeping insistently: Flow blocked. The flow was blocked, because the tube was wrapped around his neck!! I have no idea how it happened except he must have been pulling it. I unwrapped it from his neck and he went back to sleep. I hope he doesn't try any tube tricks tonight!
Today turned out to be a day almost entirely directed by Special K. We didn't consciously do it, but it turned out to be a good thing. In the morning we lazed around and wrote thank you notes for presents given at Special K's birthday party. They're over a month late, but considering everything that's going on with us, I think it was okay.
That still leaves the Christmas gift thank yous. With K's party, the presents came from folks who either knew us too little for me to tell such personal info, or family and friends close enough to see up close what we've been going through and understand that the thank yous are late. But most lf our Christmas gifts are from distant relatives who would expect to be told what's going on. And my parents have been filling in people somewhat. But it's a bit awkward. An entirely blunt letter would begin:
Dear Distant Relative,
Sorry I didn't write you in January as I was supposed to. Instead I was denying to myself and everyone else that Little T's tumour was growing again. It was a very rude shock, because his tumour had been shrinking and he seemed so happy and healthy. Near the end of the month, we took him to the ER as the fog of denial finally lifted late one Sunday night. Little T spent 10 days in the hospital with Kasabach Merritt Syndrome. Then he caught RSV and was back in the hospital again. Somehow this was harder for us to deal with than when he was in the NICU, because we knew what it was like to have him home and he knows about home too. We grieved. We're still grieving. We've also lost the false sense of security we had when Little T was first discharged from the NICU. We now know it's going to be a long road. We've had several ups and downs since then. And we needed to recover sufficiently from the trauma of January to even be able to think about Christmas when we were naively happy and optimistic. I'm still optimistic, but I no longer believe as I did then that Little T's days of hospitalization are over for good.
Anyway I didn't write any Christmas letters and that thought passed away. After writing K's birthday thank yous, Little T and C went to the farmers' market. Special K initially refused to go, and then changed her mind and decided to go, but it was too late, C & Little T were long gone. We read story books, walked around downtown and went to a friend's open house. Then C and Special K "flew a kite". Special K held the kite up to the wind where it fluttered, but didn't actually fly. She had no interest in letting go. All in all, a very pleasant mellow day.
Friday, May 27, 2005
Little T started screaming again just now. That reminded me of last night, which I had put out of my mind. Last night we figured out at least one reason Little T was screaming yesterday. C checked Little T's Broviac dressing and found a nasty red rash and some fluid underneath. Some vomit had probably washed under the dressing and his skin was irritated from the acid. Of course we didn't know that for sure, and C didn't want to remove the dressing in case it was an infection. A Broviac is a central intravenous line that goes directly through the jugular vein which quickly flows to the heart. Not something to mess around with. So we contacted the Hematologist on call. He told us to take him to the Day Hospital, which was open until 10. What a relief we didn't have to go to the ER, a huge germ factory, which costs us $100 for the privilege of visiting.
My mother's intuition was so sure that it was just vomit that I didn't even go with C, but instead stayed home with Special K so she could sleep. Of course she didn't sleep very well, and is very tired now.
And it was just vomit. Not "just" to him, the vomit left on his skin was very painful. When he vomits on my skin, I have to wash it off right away or it burns terribly. And I don't have baby skin. Little T once again showed his sweet easy going nature. Me, I'd have screamed a lot with vomit taped onto my skin and would not have been pawned off with a binky. Little T just screamed now and then and he was soothed by his binky.
I checked his Broviac just now and it was fine. So there's another reason he screamed just now. Looks like he's just tired and very frustrated that he can't put his Binky in his mouth himself.
This morning I got my first ever pedicure with my friend Jenny. I loved it!!! It was wonderful!!! Best thing: I sat down for an hour and someone massaged my poor neglected feet and legs. I put my aching feet into a warm whirling foot bath or foot spa. I got a warm yogurt massage of my legs and then a nice rub with hot stones. And after a toe trim, my toenails were painted a nice bright plum.
For the first time in my life, my toes look beautiful. I keep looking down at my feet in amazement. Jenny says my toes look like candy. It made me feel more beautiful.
I feel like I'm slowly emerging from the cocoon of Little T's pregnancy, medical issues and constant visits to the hospital.
Now I have a new dream!! I have a dream that one day I'll be able to get a manicure.
My disability is weird. It doesn't affect my lower body at all, so a pedicure was no problem, but I jerk too much to get a manicure. But someday I'll find the right drug, so I can!
Thursday, May 26, 2005
I just decided to reduce clutter in my life. Well the truth is I decided again. This time I think I have a better system: If I buy something that's going to stay in my house, I have to find three things to give away, or at least put away until Little T gets older. When Little T gets older, I can bring things out, but then I have to give away 3 baby things. I just had my first test today -- a trip to Target. And so far so good. It made me think about whether I really wanted or needed something, because I value my time more than money and it's a little bit of a pain to find three things. So I didn't buy some snack containers.
So here's what I bought and gave/put away:
a size 3 soccer ball for Special K to learn how to kick. She's going to a soccer class later this summer
a large water bottle with measuring lines and a wide mouth for mixing up Little T's formula
The irony is that as I was making up this list and feeling very pleased and proud of myself, a delivery man on behalf of Coram called to deliver -- yes you guessed it more stuff!! At least it's formula so I don't have to give away more stuff.
I'm sitting in my family room while little T tries to sleep. Periodically he wakes up and screams. He struggles to find his binky and put it back in his mouth, his latest trick. Sometimes he can put his binky back. Sometimes I put his binky back. I'm really glad he can scream now. For months when he was angry, he could only manage a raspy dying man wheeze. It meant we could take him anywhere, but it also meant that at times people gave him strange stares.
Earlier I called his eye doctor and gave him the number of our pharmacy, so he can get different antibiotic eye ointment. His left eye's infected with staph due to a blocked tear duct, one of his more minor medical issues. He finally falls asleep and snores really loudly. Special K's at preschool, so I have some time to write.
Wednesday, May 25, 2005
I dropped Special K off at L and S's house and spent another exhausting chunk of time at the hospital. It's amazing to me how draining it can be when on the surface it appears that I'm just sitting around and sometimes talking. However as with almost anything to do with Little T, it's not that simple. He had 2 apts today. The first was with GI (gastroenterology) and the second with Hematology. Poor Little T fell asleep every time we waited, but only once protested when he got woken up.
Little T fell asleep in the car on the way over. He got woken up to be weighed. But he didn't protest much. Well, no more than he usually does at being weighed. Perhaps he was stunned at his weight gain of 6.3 kg. I thought this couldn't be right. He weighed 5.9 last Tuesday, and a 400 g increase would be incredible for a baby whose greatest weekly weight gain had been 150g. And I was partially right. More on that later. Little T was also measured at 58.5cm. He's grown an entire cm in a month, which sadly is a great leap from zero growth last month. His head has grown from 43.4 to 45cm. His head's always grown from month to month, giving me hope that the steroids haven't completely ruined his brain. Keep up that head growth!
Then I met with a GI nurse practioner. She immediately asked for little T to be reweighed. His new weight was 6.25kg. He peed in his diaper in the five minutes since he was last weighed, so I suppose that accounts for the .05 kg difference. Then I had to recount his entire medical history concerning GI issues. He's had reflux since birth. It's sad to think that this was Special K's biggest medical issue as a baby and for Little T, it's an issue so minor that it's taken us 8 months and it getting worse for us to be able to deal with it.
Here's his GI background in not so medical terms. We put an NG tube down him 6 weeks ago due to poor weight gain. A week after the NG tube, he started vomiting after every feeding. Being the cheerful guy he is, he only fusses a little, then you can hear his stomach heave and the vomit projects outward. Then he often smiles. What a relief! He doesn't mind that his clothes are now drenched in vomit, but he's outraged that I change his outfit.
Unfortunately he also stopped eating and breastfeeding cold turkey. My hormones went crazy and I tried pumping for a while. The vomiting and lack of eating upsets C and me in a primal way. Baby vomit, no food, very bad, very bad. One day after Little T had vomited 3 times in a row and covered a sofa cushion in puke, I sobbed uncontrollably. I felt so helpless and stupid that I couldn't feed my own baby. I hadn't been so sad since his days in the hospital. His petechiae, nausea, puffy face and other horrible side effects are awful, but don't reduce me to tears. Every animal knows that vomiting is bad. I was convinced that he was losing weight, but it turned out that he was in fact gaining weight, slowly at first, but then 50-100g per week. So now we have a baby who gets all his nutrition via formula poured down a tube that goes through his nose into his stomach. And I struggled for two long months to breastfeed him.
The NP then immediately put my back up by suggesting he was "overfed". His weight to height ratio was in the 91st percentile and she said "he looks fat". I pointed out to her that his weight today was one data point in time. He's usually weighed on a different scale, different time of day, etc and this weight just didn't seem right. She reacted huffily that the scale had to be accurate. I didn't get into a debate about calibration and the differences in scales can be greater than Little T's small weight gain. I was sorely tempted.
Instead I moved on to the fact that Little T had just been taken off massive amounts of steroids last week. As you may know (though hopefully not from personal experience) steroids linger for a long time and steroids puff out your face. For months, Little T possessed the fattest little face, while his toothpick legs resembled a newborn's. It was painful sometimes, because people would remark how much he'd grow when it was only his face. I added that my daughter K would get pretty fat and then start growing.
And most importantly Little T only started gaining weight and growing after we started trying to give him 600 calories a day with the help of the NG tube. And trying means usually less than 600, but at least 500. The GI NP implied 600 calories might be too much. I said the nutrionist had said he needed at least 600 calories per day. The NP said the nutritionist might have made a mistake.
The official title of a nutritionist is registered dietician. To me, the word registered (except with the word nurse) conjures up a little accountant with a calculator. And indeed nutritionists calculate precisely how many calories you need based on weight, age and level of activity. Yes, of course it's based on assumptions, but isn't most human biology?
Months ago, Hematology had called in Grace the nutrionist. Grace calculated Little T needs 600 calories. PreNG tube, Little was primarily breastfeeding. Even so Grace noted the number of times he breastfed, calories per oz in breastmilk and how many oz the average baby breastfeed. And she gave me the number of calories per day he was eating. If I was an RD, I'd remember the precise number. What I do know is that it was 400 or so. I suppose showing a mother a number on a calculator is easier than saying "Your child isn't getting enough food from you." I was heartbroken. As I said before feeding is such a primal thing. So we struggled for over a month to get him to breastfeed more, eat more solids. He wouldn't. So we put down the NG tube. It was very difficult to have it go down and I cried about it.
Even now I wonder "Did I do the right thing?" And in my darkest moments I feel I made a horrible mistake. But then I repeat to myself this mantra: "Breastmilk is best. But getting enough food is even better."
Now this crazy woman was telling me he was overfed. I knew it was horribly wrong. I would not pull the NG tube. If you'd told me before Little T was born that I'd be fighting to keep a little tube that goes into his stomach in order to feed him formula, I'd said you were crazy. I felt crazy. I told her, I probably barked at her to go look at his medical records. The NP backed slowly out of the room and said she'd bring a nutritionist.
I calmed down by playing with Little T who laughed and smiled at me. I waited for 20 long minutes. As time passed I knew I had won. Then the attending doctor, the NP and another nutritionist walked in as a posse. Perhaps the NP had said I was "difficult." The nutritionist had her calculator. The attending discussed 4 different options including removing the tube, but said he wouldn't recommend it. I think removing the tube was mentioned to save face for the NP. The nutritionist said he needed 600-700 calories a day.
We talked more and decided that we'd increase the calories of his pumped night feeding to 400 calories and stop tube feeding Little T during the day to try to get him to eat again via mouth. Since he can only tolerate 40ml/hour on the pump and he sleeps about 10 hours at night, he can get a maximum of about 400ml. The current value of his formula was 24 cal/oz and we'd increase it to 26 cal/oz for 2-3 days and so on up to 30 cal/oz aka 1 cal/ml. Normal formula is 20cal/oz, so 30cal/oz must be very sludgy. In addition, we'd increase the amount of Prilosec he's getting. Then they'll see him again in 2-3 weeks to see how he was doing.
By this time I was pretty fried, so I had to ask a few times to get everything right. They gave a sheet for some blood test to look at his nutrition levels. I asked for an allergy test for milk since the increase of reflux also conincided with a huge increase in formula. The nutritionist and her calculator gave me precise numbers for exactly what Torin would need each night as we increased from 24 cal/oz to 30 cal/oz.
Then I walked across the street to Hematology. It was a little surreal. The waiting room wasn't crowded as usual with parents and grade school children. Instead five college teenagers sat there waiting for their friend Krista who had just been diagnosed with cancer. One kept repeating "It's weird weird weird." I kept agreeing in my mind, but not for the same reason. They said to each other how tired they were of waiting. I thought if only you knew how long I have sat here in this room waiting. Then they noticed Little T and oohed and ahhed over him. He soaked it all up and gave them big smiles.
Little T fell asleep. After the usual 20 minutes, M and a nurse in training came to draw his blood. I handed her the GI blood test sheet. She said she had to find the tubes for it. Wrong colour tube=wrong test. M and the training nurse pored over the book to find the tubes needed, then searched to find them. Another 20 minutes went by. Finally the training nurse drew what was a large amount of blood for a little guy. Little T smiled and laughed afterward.
Then I waited another 15 minutes for Little T's hematologist to arrive. I didn't mind, because she had kindly arranged to see him today instead of his usual time on Tuesday, so I didn't have to drive to the hospital twice in one week. She said his arm looked great. I told her about the 6.3 kg and she wanted to reweigh him.
Now Little T adores his hematologist. She can do anything to him and he'll smile. In fact he just smiled at her on the scale. A nurse commented that he usually screams on the scale. In fact this was the only time he's ever smiled on the scale. Weight of angel baby =6218.
His hematologist aka Little T's angel asked where Special K was. "With a friend" I replied. "She's easy to find babysitters for. It's Little T that's hard." She asked why. I said "I think people are afraid because of his medical issues." She very sweetly said she'd babysit if she wasn't working. Did I immediately gush and say "Thank you thank you!!! You're Little T's angel"? No, I was exhausted and said the first thing that came into my head "You're always working." a true, but poor response. She held Little T for a minute and oohed and ahhed over him. He gave her adoring smiles.
Then it was time to go home. Only 4 hours, so quick in hospital time. Little T and I got to sit in rush hour traffic. Fortunately Little T was exhausted and slept through it. I picked up Little K and talked to L a little bit about what happened. It was 6:45 by the time we got home. I had meant to get home earlier and bake the meatloaf for a hour. I put on the oven anyway. Then C came home and suggested we eat out and that's what we did.
Tuesday, May 24, 2005
The Water owl is a rare strange bird, so I provide you with this field guide to the medical issues that form a background to her daily life. I hope this background makes things less confusing, but maybe not. Learning the habits of a new animal tends to be confusing for anyone. I chose thirteen questions, because it worked out that way and thirteen is my lucky number.
- Why does Little T have a feeding tube?
He doesn't eat enough on his own. The treatments from his vascular tumour messed up his eating. The tube allows us to pour liquid food aka formula down the tube into his stomach. At first he had an NG tube The tube went through the back of his throat down his esophagus and into his stomach. Now he has a Mic-key gastronomy tube that's a tube directly into his stomach. Click here for more details about his Mic-key
- What is a vascular tumour? A vascular tumour is a proliferation of nonfunctional blood vessels. Picture if your blood vessels grew uncontrollably and formed tangled balls. Hemangiomas and vascular tumours are relatively common, but fortunately most are pretty benign medically. Unfortunately Little T's tumor got so large he developed Kasabach Merritt Syndrome(KMS) It's very rare like .1%. For most, KMS is the bogey man that doctors state is a risk like how they state there's a risk you could die during routine surgery.
- What is Kasabach-Merritt Syndrome?
Kasabach-Merritt Syndrome (KMS) is a very rare condition in which a hemangioma or vascular tumour gets so large and invasive that blood flows into the tumour and gets trapped there. Like cars stuck in a traffic jam, enormous amounts of platelets and fibrogen (blood clotting factors) are consumed. If untreated with blood transfusions, KMS kills. Sometimes patients don't make it anyway. C and I have read mortality rates anywhere from 10% to 37%.
- What do you mean by giant? How big is his arm now?
When Little T was born, the circumference of his left arm was 24 cm, or about the size of my arm and looked like a balloon. My brother said he looked like Popeye. Here's a photo. Now his arm has shrunk a lot and at its widest point is about 15cm. It's also much more differentiated like a proper arm.
- What treatments made his arm shrink?
In the NICU, he was on Interferon. It made him lethargic, and possibly depressed. It killed his appetite. After his relapse of KMS in January, he was put on Vincristine, a type of chemo instead. It caused neuropathy (temporary partial paralysis) of his legs and vocal cords. Vincristine made him feel nauseated and gave him reflux. It also made him lose his hair. Both times he also took massive amounts of Prednisolone, a type of steroid. When he was on Prednisolone, he ate about 3/4 of his recommended daily calories, according to his nutritionist but the steroids retarded his growth. When he was taken off the steroids, he started eating even less, because the steroid stimulated his appetite.
- Why was Little T on chemo? Did he have cancer?
Well, that depends on how you classify cancer. By the strict medical definition, no, he doesn't have cancer. However if you consider cancer to be an invasive tumour that is lethal if untreated and therefore you must attack the tumour with harmful methods like chemo and massive amounts of steroids, then yes he does. And we're actually part of an Children's Oncology support group. We went there at first, because there was nowhere else to go. We wondered if we belonged there, but as we told our story, all the other parents there had had similar experiences. It was incredibly sad and comforting at the same time.
- Can his tumour regrow?
Unfortunately it can and has. His hematologists thought that it wouldn't and he had his Broviac (central IV line) removed in December. Unfortunately it regrew in January and he had a reoccurrence of KMS and was hospitalised.
- Does it hurt?
Well, the doctors tell us that the tumour itself doesn't hurt. However the tumour compresses the surrounding tissue and nerves and causes Compartment Syndrome. The massive swelling from his tumour cuts off sensation and ironically blood flow to his lower arm and fingers. At first he didn't move his arm or fingers at all. Now he moves his fingers somewhat and shrugs his shoulders. So the process of growing doesn't appear to hurt, but the process of shrinking does, perhaps because circulation and sensation return to his arm.
- What's the long-term future for his arm?
No-one really knows. We're hoping he'll be able to use his arm. Right now he's rather lopsided, and he just learned to roll over at 10 months, because his left arm is so heavy and non-functional. We're hoping that through physical and occupational therapy, he'll be able to regain strength enough to crawl and eventually walk.
- How many times has he been hospitalized?
- NICU - Birth to 6 weeks old for KMS
- December 2004 (5 days) for a urinary tract infection caused by being without liquid because he had an operation to get his Broviac removed. He had another Broviac installed after his relapse in January.
- January 2005 (10 days) for a reoccurence of KMS
- February 2005 (7 days) for RSV a few days after he was released from the hospital, so he probably caught it from the hospital.
- June 2005 (7 days) for line sepsis. His Broviac got infected.
- July 2005 (48 hours) recovery from G-tube surgery
- You mention you have a movement disorder. What is it?
I have Myoclonic dystonia a very peculiar rare neurological disorder that affects fine movement. Neurologists get excited when they see me, because it's so rare. Basically my head or arms or hands will randomly jerk when I perform small activity. It appears to be nonprogressive and in my case, it also only affects my upper body. Myoclonic dystonia is thought to be caused by a defect in the basal ganglia. The analogy that works best for computer geeks is that I have line noise in my basal ganglia that causes me to jerk. I agree with this theory, because it does seem to take me longer to learn fine motor activities. But once I've learned them, I do just fine, except for the random jerking.
- What's the basal ganglia and what does it do?
The basal ganglia help the brain perform more complex tasks. For example, after you've learned how to write or type, you don't consciously think about how your hand moves, you just think I want to write or type a particular word. Your basal ganglia helps you coordinate all the complex movements needed to perform these actions. Remember how when you first learned how to write or type, you had to think about everything and it was very slow at first. Well that was because you didn't have the proper neural pathways in your basal ganglia yet.
- Is your medical condition related to your son's?
I'm told they're not related as they affect two entirely different systems. However I think the answer is that no-one knows the true cause of either condition, so it's impossible to know with current medical information and technology.