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!!