Sunday, August 1, 2010

Unchartered Territory

Firstly I apologise to my blog followers for not updating in so long.
As you can imagine from our Journey so far, life is shall I say interesting for us. There is barely a dull moment in this household!

I really havnt blogged much about my other children as I guess the purpose of this blog is to put down my rare feelings and emotions on life with Sarah, firstly it was a pregnancy journal and then well it turned into a place were I could blurt out my fears and then our journey in getting her home.

Our Eldest Child Kevin also has a Medical condition, a heart condition to be specific. It was never detected at birth and in fact wasnt diagnosed until he was 7. It was a very frustrating time. He had just been Diagnosed with ASD (Autism Spectrum Disorder) and his paed noticed he had a heart murmour, off we went for tests to learn that He had a Hole in his heard and the plumbing of his heart wasnt quite right. So he had a Atrial Septum Defect and PAPVD.

We then got a rude awakening to the health system in Australia and the Red Tape, I was tearing my hair out. There were waiting lists everywhere, infact the waiting list for a MRI was 5 months! It was ludicrious and I was furious.

It took us over 12 months to navigate the red tape and waiting lists and after 5 cancelled surgeries we finally had a date. Tuesday the 16th December 2008 he would have his surgery. It was going to fit in great, we could get him over his surgery by the time our baby arrived at the end of January.

Well as you know that didnt quite work out so well and with Sarah in NICU, we made the decision to cancel Kevins Surgery, somehow the idea of Sarah in NICU and Kevin in PICU wasnt so appealing.

So Kevin Finally underwent his surgery in Feb this year. It was a very stressful day, his surgery was expected to last 6-7 hours but instead it went into the early hours of the next day and it had taken them 12 hours. He however was a champion through the initial recovery and was discharged home after 5 days!

I tell you though watching 2 of your children undergo Open Heart Surgery within 3 months of each other was quite draining, as a parent its one of the hardest things you do. You hand your child over to a surgeon and until they surgeons emerge from theatre you have no idea what is going on. When Kevins surgery went so far over the expected time I become more and more anxious by the hour. I was relieved once I was able to get into PICU and see him. Although its so different seeing your baby on a Ventilator compared to seeing your 10 year old on a Ventilator.

It was also a time of stress because as you know Sarah's medical condition continues to be precarious and she can go downhill rapidly requiring admission to hospital. I had no idea how I would cope with both in hospital on Different wards and still 2 more at home to care for, thankfully it didnt happen and Sarah was farily stable at that time.

So onto Sarah. Im so happy to advise that we actually havnt had an admission for about 4 months now, we actually had a great run of 13 weeks where we didnt even have to take her to the emergency department!

Someone asked me recently is she more stable? I dont think she is, I think its more that we now know how to treat very complicated situations.We have dealt with almost every Diabetic complication there is, and its easier to treat her at home than in hospital.

In April Sarah Featured on the Good Friday Appeal as a follow-up story to the 2009 story. You can have a look at the link here
Good Friday Appeal 2010 
May and June were pretty uneventful and we just juggled the day to day complications at home, some days hairer than the day before, but we somehow managed and I can tell you it was such a relief to have some time alone, without the hospital admissions and the hospital appointments and this and that and this and that, I felt for probably the first time that I was able to be just a mother and not a Mother, Nurse, Carer.

July has been a very challnaging month. This month we have seen gastro, tonsillitis a viral ear/throat infection and Bronchiolitis, including our first experience with inserting an NG tube!

We seemed to be able to limp her through all that without an admission and I was very impressed with myself.

Then last Thursday Sarah had her Checkup with her Paed at the hospital. Now firstly her Paed is second to none. He isnt only her Dr either, he advocated for Sarah around the clock. He is very aware of our family unit and my desire to keep her home whenever possible.

So at the checkup he was very impressed, the last appointment was wasnt really sitting unassisted and this time she isnt just sitting on her own, she is now even crawling!!!!!!!!!!!!!

I'd discussed my concern with him about her Color, her skin has become very pale over the last 6 weeks and I was concerned that maybe her haemaglobin was dropping to low levels again.

He agreed that she did look pale but given her last FBC her levels were good at 126, he didnt want to have to draw blood if he didnt have to, so we decided to wait it out and see if her color got better over the next few weeks.

So as I was leaving, very happy that we got such a good report I asked one of those "by the way" questions.

I had noticed over the last week that her Stools have been very pale. Think the color of a Manila folder or the color of cream and yep thats the color Im talking about. Id only asked him as I had wanted to send off a sample to check her for Malabsorbtion.

Well he said can you go and change her and bring me a sample, but I hope its not as white as you are saying it is, if it is this could be serious.

So I bring the sample back, he takes one look and picks up the phone to page our Gastro Consultant.

So he explains to me that even by looking at the sample he can tell me its not malabsorbtion but what it is, is a problem with her Liver. There is no Bile in it and if there is no bile in it, the bile it pooling in her liver causing irreversable damage.

Many of you would remember that in Decmeber Sarah had an MRI which picked up a problem with her Liver. The condition is Primary Schloising Cholangitis. Its basically a condition where the bile ducts are malformed and the restrict the flow of bile. There is no cure for the condition, the only option is Liver Transplantation. However is mostly strikes people in their 30's-50's so there is very little data of Paediatric patients.

We were sent for Bloods on Friday which confirmed there appears to be some type of blockage in her bile ducts and the most likely explanation is that they have collapsed.

She is booked in for a Lover Ultrasound and Biopsy tomorrow morning, once that is done we will have a far clearer picture of whats going on, but her stools still remain white and she has now started itching all over, not a good sign. The most likely solution will be surgery this week to place stents in her Bile Ducts and start the process of Liver Transplantation.

And I guess that is what brings us into unchartered Territory, all the way through this journey Ive been able to have alook into a Crystal ball in a way. There is a little boy accross the tasmin that has the same condition and he is 6 months older than Sarah. But Finlay doesnt have ther Liver Condition and of the surviving children Sarah is the only one to survive with Liver problems, so we are on our own on this one.

So please say a prayer tonight for our little girl. I dont expect good news tomorrow, just have that feeling. But what I do know is we will fight this head on whatever the future holds for us.

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Donna said...

Kat, there's not a lot I can say that will help or even make you feel better but we're here and thinking of you guys as always.

It's an absolute nail biter this one. I can only imagine how scared you are. Try and get some sleep tonight. I know it's easier said than done. Good luck tomorrow. I will be hanging by the phone to hear the results.

Take care and give Princess Sarah a ig hug from me xxx

Melissa said...

Damn, Kat. Talk about a blow for you all. Please let us all know how the tests go tomorrow and what is decided.

You're in my thoughts so often and I hope that the results aren't as bad as they seem right now.

Kisses for the little warrior.

Michelle said...

I've only just seen this post. How is your beautiful little girl doing? My thoughts are with your baby and with you and family.

I can't imagine what you go through at all. My husband gets pancreatitis and his health really takes a nose dive when he pancreas is playing up and not processing properly.

Kisses to your princess and huge hugs to you and your family. xxx