Tired Of Semi-Isolation (Almost 4 months post transplant)

 

So Miya has been home close to three months and I am SICK of being in semi-isolation.  Miya is too.  She’s always grabbing the car key out of the drawer and making the sign for “car”.  

About 10 days ago, we all came down with the flu.  Chris and I were sick for about 3 days, but Miya was sick for 6 days.  She experienced vomiting and diarrhea on each of those 6 days and she lost 3lbs.  We ended up taking her to the hospital last Tuesday.  After about six hours of observation and 60ml of electrolyte solution every hour, they gave enough solution to take home and continue treatment there.  For 24 hours, around the clock, Chris and I put 60ml of electrolyte fluid into Miya’s NG tube. 

We have begun tailing Miya’s Cyclosporin.  Her last dose will be on the 6th of March.  I’m excited for her to lose all her monkey hair!!

Other than that, things have been uneventful.  Same old, same old.  I am totally sick of isolation.  I think it’s harder on me than I thought it would be.  “How hard can it be to stay home all day with my kid?” I thought. Hahahaha.  Last Saturday, when Miya and Chris were the sickest of all of us, I went to the grocery store for sick supplies (popsicles, PowerAde, etc) and I was never so happy to get out in the car by myself IN MY WHOLE LIFE.  I was so so so excited to drive to the grocery store!! Hahahahaha!!! Is this what I’ve been reduced to?

 

A New Year...2012, Here We Come!!! T+77

Since my last entry, nothing much has happened, prooving the adage "no news is good news" is also true for my blog.  Miya was last seen in clinic on the 7th of December 2011 and a new appointment was made for the 11th of January, 2012. 

On the 20th of December, a small hole was discovered in Miya's hickman line during her weekly blood tests, done at home by our community nurse (whose name is Dave). We immediately aborted the blood tests and set off for Royal United Hospital in Bath, which is our local shared care facility.  While we were on our way, Dave called us and told us we should go to Bristol Children's Hospital because Bath couldn't repair the line. 

We waited in a small side room of the Bristol Accident & Emergency department (a HUGE no-no for post-BMT patients...sitting in an emergency room with no immune system is NEVER a good idea. Luckily, she didn't become sick as a result.)  For several hours, Bristol consulted with Great Ormond Street and everyone decided we'd better go to GOSH the next day for a repair. 

After the line was repaired (on the 21st of December), blood samples were taken to see if the line had become infected or contaminated during the time of the puncture.


We received a call late in the afternoon on the 22nd from GOSH, advising us that Miya had an infection, and to go immediately to RUH in Bath for IV antibiotic treatment.  Miya received a small amount of antibiotic in her line, and it was locked in for 24 hours.  The first three doses were done 12 hours apart, and then she received a dose every 24 hours after that, for a total of five days.  It wasn't a long treatment, and even though we had to go in on Christmas Eve and Christmas Day, it wasn't a huge ordeal.

Miya has started kissing everything (except her parents) and is a loving and lovable child.  She is very bright and although she isn't speaking, she understands almost everything we say.  She loves music and loves to dance.  Right now, she is covered in brown hair, as a result of the immunosuppresent Cyclosporin.  She has huge, fuzzy eyebrows, a furry forehead and fur around her eyes.  She had furry arms, a furry back, and furry legs.  This hair will fall out when the Cyclosporin stops.

Miya, Chris and I would like to wish all our readers a Very Happy New Year!!!

"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!!