I have decided that even if we gave Daisy sugar tablets she would have an unusual reaction to them (probably drop her sugar levels...), and so it is with her new drug cocktail - the potent combination of iv immunosuppressants and steroids. So this week's symptom I have had to become an expert on is (drum roll)......dangerously high blood pressure. In fact I have now become so obsessed with blood pressure readings and trying to find some sort of trend in why Daisy's bp has been going sky high that I have been taking the whole family's blood pressure (I am please to report that mine is in the very healthy range). So we have been tweaking the doses of meds and today following a conversation between Daisy's local consultant and her GOS consultant we have switched the steroids from IV to enteral (through her gastrostomy tube). Her bp has lowered a bit as a result but it may take a while for it to normalise (hopefully). We are also trying the achieve certain levels of the immunosuppressant drugs in her body in order to counter the out of control immune reaction in her gut (basically her body is attacking itself which is causing the massive inflammation and ulceration). Of course this being Daisy establishing these levels is not a test that our hospital microbiology lab performs day in day out, they run them twice a week so we all wait with bated breath the see if she is getting the right level of the drug to do the trick.... The word from GOS is that she needs to be on this therapy for 6 weeks before they can have a look at her insides again and see if it has done the trick.


All this means that inspite of now being absolutely clear of the MRSA (I promise that's the last time I mention it), Daisy remains confined to an isolation room for a while longer because of the risk of her picking up an infection. This is becoming increasingly difficult both for Daisy and for me - I am essentially Daisy's teacher, entertainer, carer and mother (replaced by Andy on the weekends) and sometimes I just go a bit stir crazy, particularly as prior to all of this I was working full time with a successful marketing career. Daisy is doing really well at the moment and, although she is physically very weak, needs more social interaction and opportunities to move around without the 4 tubes that are connected to her more or less permanently. There is a bit of light at the end of the tunnel in that we have re-started gastrostomy feeds - initially at 1ml an hour we now have pushed it up to 2mls and so far so good. Last time we tried this Daisy's tummy bloated up and she was vomiting and full of wind - after a full week on gastrostomy feeding she has been symptom free so this is a good sign. Fortunately the liver function problems she had previously seem to have reversed and she does not look jaundiced and is not pouring bile out of her tube.


I'm starting to get impatient (or in-patient) and wanting to get home but I know from bitter experience that if we push Daisy too much then we will undo all of the good work. At least this weekend (weather permitting) we'll get a little break as we are all going to Chase Hospice. Daisy will go by ambulance on Friday morning and I will follow on Friday evening with the rest of the children, closely followed later in the evening by Andy. I asked Jules what he was looking forward to doing at Chase, thinking he would say "playing Xbox all weekend" but his response was "hug Daisy all day and all night". This time has been so hard on them, Andy and I can at least talk to doctors, search the internet and focus on fighting Daisy's corner but all our other children get is an occassional visit with Daisy when she is up to it and to wait and wait for news on when she will come home. It's like being in limbo - we can't give them answers, all we say is that everyone is working really hard to make it possible and when she is ready and the doctors agree, then Daisy will come home.

Of course coming home will be so different - we have to get to a point where Daisy can tolerate 8 hours off her TPN, meaning that for 16 hours of the day she will be on it. This is not a straightforward thing, Andy and I will need to be trained beforehand and signed off by GOS and Daisy's bedroom will need to become more like a hospital room and less like a playroom. However we will do anything now to get her home and I know that Daisy will suprise us in time by becoming stronger and stronger and overcoming all these obstacles that life is throwing her. While this time is so trying, it's Daisy and her wonderful fighting spirit that is keeping all of us going....

1 comment:

oleyfriends said...

Stephanie,

I saw your blog and wondered if you had connected with the Oley Foundation?

The Oley Foundation offers free information and peer support for families like yours with a member on tube or IV feeding at home. We are an American non-profit organization.

Check out our website at www.oley.org.

In particular you may be interested in an article on a new treatment for pediatric patients on IV nutrition with liver disease...posted at http://www.oley.org/Omegaven_Liver_treatment.html

I also highly recommend checking out our Meet Patients section (try both links).
http://www.oley.org/volunteers.html
http://www.oley.org/forum.htm

Please note that joining the Oley chat forum is SEPARATE from joining the Oley Foundation. Both are free. Joining the Foundation means you'll receive an information packet, our bi-monthly newsletter (sign up for email version so you get it in a timely manner), and Oley news updates.

If you are interested, I have two patients in particular I would recommend introducing you to. One to talk to about bile drainage issues, and one to talk about blood pressure and TPN. Let me know if you are interested.

Finally, I would be remiss if I did not mention PINNT, which is a patient group in Great Britain for families with a member on IV feeding...posted at http://www.pinnt.com/

Feel free to contact me with any questions or concerns.

Roslyn Dahl
Oley Foundation Staff Member
www.oley.org
dahlr@mail.amc.edu

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