"A Long December And There's Reason To Believe Maybe This Year Will Be Better Than The Last" T+49

There's a song called A Long December by Counting Crows and a portion of the lyrics goes
"A long December and there's reason to believe maybe this year will be better than the last". I sing this song every year, but this year it really  has meaning. 


The year began with a routine tenotomy to release the tendon in her right foot, as a part of club foot correction and ended with a bone marrow transplant.  It seems like all we've done this year is spend time in hospitals.  Maybe in 2012, we'll spend more time out of hospitals. 

We've been home for three weeks tomorrow and it has gone by so quickly.  Our days are dictated by routine and if we deviate, it can be a struggle to get back on schedule.

Miya takes several medications via her NG tube four times a day.  She also requires 1100ml (1.1 litres) of fluid per day in order to flush her kidneys.  If we go anywhere, we have to make sure it is just after she's had her meds and a liquid bonus (through her NG tube).  She's still not eating properly so most of her nourishment is through Pediasure, given through her NG tube. 

Our first clinic appointment was two Wednesdays ago, and we go back tomorrow for our second appointment.  Usually, children attend clinic weekly for a while, and then move to bi-weekly, then every three weeks.  Miya went straight to bi-weekly.  The consultant said that in 10 years at GOSH, he has never had a better Hurler's patient. I was so pleased to hear that. 

Other than the daily liquids and medications. life has been relatively uneventful (thankfully).  I am soooo excited for Christmas (19 more sleeps!!) and have had fun searching for toys for Miya.  (I think I may have gone a little overboard. Oops.)  Miya has been so brave and so good this past year, I just want to over-compensate with...stuff.  (Yes, yes, I am aware that if I continue, she will turn into a spoiled brat.)

After 10 weeks off, Chris went back to work yesterday.  I must admit that when he came home, I collapsed on the sofa.  Looking after Miya isn't difficult it's just tiring. 

Sadly, there's not much to update you on.  Miya is well and Chris and I are well.  The dog is well, too.  I am excited to receive my mum's yearly Christmas box. It should be here next Tuesday or Wednesday.  Dad also sent a box too, with Ganong's chocolates in it!! Fabulous!!

Up And Down

Bath Time

This Video Was Taken In The Hospital.

I Feel Like Such A Grown-Up T+24

To follow the old adage "When in Rome", I decided to do just that (only replacing "Rome" with "London") and bought an Oyester Card (a plastic card you put credit on so you can use it to travel on busses, the tube, trains) and decided to travel to and from the flat on The Tube (the London underground system, to those who aren't savvy).  I had never travelled on the Tube alone before, and only a couple of times before that with Chris on a previous trip to London, so I was a little nervous. 

So I planned my first journey carefully, put on my best London face (a neutral expression that displays nothing) and I boarded the Tube.  I felt like such a grown-up!! (I must admit that although I am 32 chronologically, I am five in my head.) I was soo excited!! After my first journey (an epic fail, by the way.  I neglected to make sure all the lines I needed to complete my journey-Picadilly line to Central or District lines-were open and I ended up walking an hour and a half to the flat from South Kensington because the Central and District lines were closed for the weekend. My phone's GPS was confused by the tall buildings and I walked through Chelsea,Westminster, and down the FANTASTIC Victoria Street before arriving at my final destination *sigh*) I began to be a little envious of the people on the Tube, dressed in their suits and work clothes reading reports or going over projects, so I started to wear my nice brown velvet coat with the embroidery and I bought a nice new bag from River Island and I began to dress as if I were going to work too. 

I love the anonymity of London.  I love that no one cares where I'm from, that I have an "accent" or that I'm foreign.  I love that no one cares what I'm doing because they're so wrapped up in their own little worlds.  I love taking the Picadilly Line on the Tube and going down, down, down those loooong escalators, that take me into the belly of the busy, busy city.  I love shuffling along with the masses and standing or sitting on the Tube, reading my Kindle and looking nonchalant. I love exiting the tube and being lifted up, up, up out of the belly of the beast and being spat out onto the busy sidewalks of London. I love being a part of the crowds who cross the crosswalks and who take the free newspapers from the vendors who stand outside the Tube stations.  I feel alive. I feel as if I am a part of things. 

Enough about me.  Let's talk about Miya, the miracle child. 

Miya is fantastic. Miya, I think, has defied the doctors' expectations. Miya's neutrophils are growing nicely, although she did have a dose of G-CSF last night.  G-CSF is a drug that encourages the bone marrow to make more neutrophils/white blood cells. This past week, we've been able to go outside for walks with the rain cover on Miya's stroller to prevent interaction with germs/infections.  We were also told that Miys is 100% ENGRAFTED!!!!  I have began preparing Miya's many oral medicaitons myself (in preparation for discharge, so I'll know what to do at home) and have been feeding her via her NG tube with an apparatus called a Gravity Feed Unit.  This has been touch and go, as it's difficult to get the flow at the correct speed and Miya has vomited a few times because I've had the feed unit going to fast.  (A gravity feed unit is a recepticle for holding milk or water, attached to a tube which fastens to the NG tube. You hold the fluid recepticle up in the air and gravity pulls the liquid into the NG tube. The higher you hold it, the faster the flow.) Today, we are going to try smaller amounts of liquid more often and see how that is tolerated. 
**I should mention that Miya is still eating and drinking very little. She has a fluid target of 1.1 litres a day, which is why we are still using the NG tube for milk feeds and water.**

The best news, however, is that on Wednesday the 16th if Miya remains well, WE CAN GO HOME!!!!! If that actually happens, we will have been in hospital for 37 days.  I think that this is a record time!! A 5 1/2 week transplant!!

We won't be out of the woods yet, though.  Miya will be in isolation at home for at least six months while her immune system continues to grow. (It can take about a year to reform.) We will have to travel to London every week, initially, for clinic visits. She will be given 4-5 medications four times a day for at least six months. These include anti-sickness, an immunosupprant, some antibiotics, an anti viral, and anti fungal medicines. These are to provide support to her immature immune system and to keep introducing the new bone marrow slowly so she doesn't reject it.  Miya will be on penicillin for life.  She may have fevers, vomiting, diarrhea, she may need red cells or platelets.

This experience has changed me.  I think it has changed our family.  The nurses say what a great team Chris and I make (Team Hulse, Woop Woop!!!) and I think it has brought all of us closer together.  Although I love London and have had fun playing "grown-up", I will be sooo glad to go home!!

Me, Holding A Gravity Feed Unit

T + 17 Some Good News!!

 

This week, Miya has been fabulous! Her neutrophils are steadily increasing and this week, they will be doing some tests which determine how she is engrafting and if these are Miya’s neutrophils or the donor’s neutrophils.

On Monday, Miya ate a little piece of a Nutragrain Bar and on Tuesday she ate more Nutragrain Bar and drank some juice. On Wednesday, she came off the background of IV morphine and was eventually disconnected all together in the evening.  She ate one slice of toast with butter and jam and drank some juice. 

Despite having a little appetite back, Miya is still receiving two bonus Pediasure milk feeds and an overnight Pediasure feed through her NG tube.  Some people are a little confused about the difference between the NG tube and the Hickman line (which gives IV access).  The NG tube is a tube that goes up her nose and into her stomach.  It is used for milk feeds and giving oral medication.  The Hickman line is linked directly to a vein and gives venous access to IV medications. 

On Thursday, we we advised that her counts were definitely on the rise and if they continue, Miya will be taken off supportive medications at the beginning of the week (ie. anti sickness medicine). We were also told Miya is the only child on the ward NOT on / never been on TPN!! TPN, as I explained in a previous post, is Total Parenteral Nutrition and  is given through the Hickman line (intravenously). It is nutritional support for children who do not tolerate milk feeds and / or who are vomiting a lot. 

On Friday, Miya’s mouth seemed a bit better and her voice wasn’t as hoarse.  We were also advised that if she is doing this well next week, WE MIGHT BE ABLE TO GO OUT FOR A WALK OUTSIDE!!!!!!!!  Also, we will start converting IV drugs to oral medications!!!! This is a HUGE step in the recovery process. 

I had mentioned on Facebook that if Miya’s neutrophil counts were above 0.2 for three consecutive days, she may be allowed out into the corridor.  Miya will not be going into the corridor because of the possibility of catching viruses that may be going around the ward and because of the possibility that she may pass a bug called C Diff to other patients.  (Miya was admitted with a bug called C Diff in her poop.  Please see earlier posts regarding our admitting process if you don’t remember.) Fresh air will be good for Miya and it is better than walking around a hospital full of sick people. 

Fingers crossed, this week coming will allow us to convert IV drugs to orals and allow us to go outside!!

I have started thinking about Christmas and have even purchased a few items for Miya!! (Thanks, Lisa, for letting us use your house as a dumping ground for this stuff!!) My mum has sent me money to get Miya a Little Tykes Kitchen and we have bought her some BSL (British Sign Language-Baby Sign) books.  We also want to get her a toy Silver Cross stroller.  I am SO EXCITED for Christmas this year!!  I LOVE TOYS!!

WE HAVE NEUTROPHILS!!! T+11

Days run into each other in this place.  I hadn't realized until last Thursday that I hadn't left the hospital in four days.  Also, I now fully understand why sleep deprivation is used as a form of torture. 

On Thursday, T+8, Miya's platelets were decreasing and her neutrophils were at zero. Neutophils are produced in the bone marrow and circulate in the blood.  They make up about 50%-75% of white blood cells and are the first type of immune cells to respond to infection.  Also on Thursday, Miya spiked a fever (anything above 38°C is considered a spike). Miya was given standard treatment of fever reducer and antibiotics and she responded well.  Her pain relief was increased to oral Morphine due to mucositis developing.  Her mouth is sore and red, and bleeds when we do her mouth care routine.

On Friday, T+9, Miya's pain relief was increased to Morphine via her Hickman line. She now receives a small, steady dose called a "background" at all times and can have a "push" of Morphine when she becomes distressed (ie. when we do her mouth care). 

Saturday, T+10, is when we noticed Miya's hair beginning to fall out.  Although we shaved it prior to being admitted, it had begun to grow back over the nearly three weeks we've been here.  Miya had a bad morning, complete with lots of screaming. She had a push of Morphine and after we dressed her and completed her mouth care routine, she settled nicely and had the best day she's had in a while.  She played all day and chattered and laughed.  She even ate 1/4 of a chicken nugget and 8ml of Ribena blackcurrent juice.  She also began having some diarrhea yesterday (which I'll take any day over vomit.  I don't do vomit).

Saturday night prooved to be a horrible one. Miya didn't settle until nearly midnight and our nurses were noisy and kept forgetting to turn of the light when they left.  Machines were constantly dinging and clanging for some reason or another and I only got about two hours of sleep. 

This morning, I went to the nurses' station to get Miya's blood results and was delighted to find that she has Neutrophils!!! They are currently 0.06 (normal neutrophil counts are between 3000-6000 in each mililitre of blood). When Miya's neutrophils are  0.2 for three consecutive days, we will no longer be on "Green Precautions" (the strictest kind of precaution-wearing plastic aprons, crazy hand washing, etc.) and Miya may be allowed out into the ward corridor in the evenings when there are fewer people around.  I CAN'T WAIT FOR THAT!!!!

Counts Nearly Zero T+7

Miya continues to have a decreased appetite.  She is nourished almost entirely via her NG tube with Pediasure milk and water.  On Friday and Saturday nights, Chris stayed with Miya and I stayed at the flat.  Miya continues to take anti-sickness, anti-rejection, anti-fundal, and anti-viral medicines. 

On Sunday evening, the phone rang and no one answered when I said "hello".  Miya woke up and was FURIOUS!! It tooke me forever to get her settled again and she managed to get her NG tube out.  She was on a milk feed at the time.  Milk was all over her and all over the bed.  The NG tube was reinserted on Monday morning. 

On Monday, Miya's red cell count was low and she was to receive red cells Monday evening.  The lab sent up the wrong blood type (Miya's pre-transplant type, rather than her post-transplant type) and Miya was given the transfusion on Tuesday. 

Miya also developed some mucositis on Tuesday and we have a special rinse we swab her mouth with 3-4 times a day.  She also developed a couple of small patches on her bum where the skin was peeling back.  A couple of nights ago, she had a student nurse looking after her and I don't think she knew she was meant to change Miya's bum in the night. I slathered her bum in the 50/50 cream they make up here (half Vaseline, half Metanium) and the nurse she had last night did the same, and this morning her bum looks much better.

Miya woke this morning at 11.00hrs and refused food and water. She was put on a boost Pediasure feed.  She is now sitting on Chris' knee.

The doctor told us this morning that her neutrophils are nearly zero. They will remain at zero until she begins to engraft. At this time, she is susceptible to fevers and infection.  This is normal and she will be treated with antibiotics as required.

Also, if Miya's weight begins to drop (so far it's holding steady at her admission weight) or if she develops mucositis in her gut and begins to vomit from the milk feeds, she will be put on something called TPN (Total Parenteral Nutrition).  This is given intravenously via her Hickman line and to begin, she will probably be on it 24 hours a day.