4 1/2 Months Post Transplant And All’s Well

 

Yesterday was our monthly trip to Great Ormond Street Hospital in London for Miya’s clinic appointment. 

Miya was hardly recognisable to some of the staff, who were astonished at how much she had grown since January, and how good she looked.  The usual blood tests were run, along with an engraftment test and a CD4 Marker test (to gauge the production of T-Cells, a part of the immune system). Her bloods came back today (apart from the engraftment and CD4 Marker tests) and they were very good.  She is doing so well, that the doctors don’t need to see her until April, at her 6 month post-transplant checks. 

Miya has started saying some new words: up, bye, yay! (while clapping her hands) and she can climb stairs REALLY quickly.  She tries to climb them one foot at a time, and holds on to our hands or the wall to accomplish this. She understands almost everything we say to her, and is very good at putting things back in their correct location (for example, she’ll put her chalk and crayons in the correct trays on her easel, and she’ll put her books and dolls back on her toy shelf).  Her appetite has increased and she no longer requires feeds through her NG tube.  We have learned to place the NG tube ourselves and the community nurse only comes to take Miya’s blood pressure, take bloods and do Hickman line maintenance. 

At April’s appointment, our termination of  semi-isolation will be determined as will the removal of the Hickman line.

And They Were Turned Away, For There Was No Room At The Inn

Firstly, I should tell you that Miya is not having a gastrostemy.  There was no availability until just before the scheduled admission date, and the BMT team don't want to take the risk of delaying the transplant just because of the procedure.  Miya will have an NG tube instead. 

Now to the main point of today's post...

Here we are, 10 days from scheduled admission and we still have no accommodation for the second parent.  It was Chris' and my plan to share care of our daughter and relieve the other parent when necessary. We were going to share night duties, with me being on for two nights, and him being on for two nights, etc.  WRONG!!

GOSH have NOT been helpful in the accommodation department. They have advised that unless the child is in ICU, they are not obligated to provide accommodation for the second parent. We even have a letter from the CNS on the BMT ward stating that due to personnel cuts in their department, the second parent is needed to assist in caring for the child.

I have made a complaint about the Family Accommodation Office at GOSH, and I don't think anything was ever done about it. (The Family Accommodation Office has been rude to both Chris and myself on several occasions.) The liaison office (where I made the complaint) were most unhelpful as well.  When I asked about accommodation, I was handed a sheet of paper with local area hotels and rates printed on it (ranging from £87.00-£123.00 PER NIGHT!!!!) and was told, in the politest of ways, to PFO (Please F**k Off).  Who has £4000-£5000 to spend on a hotel room?!?! Not I ! 

We have applied for funds through a services charity called SSAFA but nothing as come of it yet. I think it's pretty late trying to make hotel reservations at this late date, anyway! Good luck finding a hotel in central London that will be able to provide accommodation for at least 6-8 weeks!! 

Next Sunday, it looks as if we are headed to London on a hope and a prayer.  One of us may be sitting on a London street corner!!  Maybe we should bring a sleeping bag and our dog...also a huge cardboard sign that says "Will Perform Like A Circus Monkey For Accommodation".  I feel like a circus monkey...all this running around and trying to get everything organized and get everyone packed to go. Could someone please invent a cloning machine so I can get more done? Why is nothing more being done to help us? Surely not all families who have two parents staying with their child can afford the astronomical cost of a downtown London hotel, plus the good fortune to actually be able to obtain a continuous 6-8 week reservation.

Tomorrow, I am having Chris phone a charity we've been told about that provide housing for families who are being treated at GOSH.  I don't have much faith in being able to secure anything, but here's to hoping! Maybe Chris will have better luck. People don't seem to respond to me. Maybe it's because I'm foreign...

MPS: It Sounds Bad Because It Is Bad

This morning, when we arrived home from GOSH in the wee hours, I was irritated.  I was irritated when I woke up this morning. Before I tell you why, I'll give you an update on how Miya did yesterday with general anesthesia and her CT scan.

Miya is a Super Star!! I don't know how she does it, but she manages to deal with everything that's thrown at her with a smile on her face.  That poor child hadn't had anything to eat for NINE HOURS when it finally came for her to be anesthetized. She hadn't had a nap (except for a brief hour or so on the way to the hospital) and she didn't cry. She didn't complain. She happily played in the ward's play area, or in her bed.

Chris held her on his lap when it came for her to be gassed, and I knelt in front of her. She was crying and I got weak in the joints and felt a little sick. I didn't know if I was going to have to run from the room or not. Poor Miya was wiggling and crying and then went limp. I feel as though I can't describe it in words. We said our goodbyes as she laid motionless on the stretcher which broke Chris' and my heart. How do you leave your child so helpless and vulnerable in another's care?

We went to the hospital restaurant to grab a drink and something to eat and then headed back to the CT scan area and waited for her to wake up. We hadn't been there long when we could hear Miya's dramatic cries coming from the recovery room. The anaesthetist (or anesthesiologist, as they are called in North America) told us that Miya did really well and she had a good airway, considering she has Hurler's.  Great news!! 

 Sitting On Daddy's Knee After Coming Up To The Ward From Recovery. Still A Bit Grumpy.

Poor Miya drank 14oz of milk and ate a banana and some Cheerios when we got back to the ward. She played with her stuffed toys for a while before settling down for a nap.  The pre-meds for the ERT came around 1800hrs and the infusion was hooked up close to 1900hrs.  She slept through most of the infusion, but woke up for the flush portion of it. (When the bag is finished, there's about 15-20ml left in the line. The nurses flush this through with saline solution. Therefore called "the flush".) 

ERT No.18 (There's a sock on her left hand so she won't pick at the canula)

We don't know the results of the CT scan, but I'm sure we'll hear something today if there's somthing wrong.  I am also going to phone the BMT ward to tell them that the anesthetic procedure went well and to schedule the gastrostemy if that's what Miya's medical team feel is best.  


Now comes the part I'm a little peeved about. This happens all the time (unfortunately) and I had a really difficult time dealing with it. 


Parents in wards tend to congregate.  They ask what each other's child is in the hospital for and listen politely while the other parent explains. At least, I listen politely. Two mums last night did not. First off, when these two mums asked me what Miya was in for, and I tried to answer, they kept cutting me off with information about their children.  Fine. If you want to talk about your kids, I'm down with that. Just wait until I've answered your question about my kid!! If you didn't want to know, why did you ask?? Secondly, and the reason why I'm so peeved,  I HATE HATE HATE trying to explain  MPS to people who have never heard of it before.  They usually don't understand how bad it is ("What's the big deal,? It's just a missing enzyme. What harm can that do?") and when I try to explain the severity of it, people think I'm trying to make my kid seem sicker than everyone else's kid!! Kind of a munchausen by proxy situation, if you will.  


MPS is bad, right? I don't mean to sound like Miya's situation is worse than everyone else's but sometimes, it is. Sometime's, other kids are worse off. When people ask me about MPS and Hurler's, I tell them what it is. I don't sugar-coat it. This whole situation makes me wonder what I could do to bring more awareness to the disease. 


That is all.