Posts Tagged With: blood tests

Mysteries, emotional roller coasters and flickers of hope Pt. 1

Allow me to share a journey that our family has and is still travelling on at this time. A few of my friends are going through similar experiences and my heart and prayers go out to them as they work through their frustrations and emotions and faith during this time.

I should have written this last week or even three days ago, when my report would be a glowing one of a trial near past and the lessons I have learnt. I was reminded last night that we are not out of the woods yet.

For those of you who don’t know, our eldest son Elijah has been sick since at least the start of the year. He has had well days, well weeks even, but the cycle was getting smaller and he was getting sicker with every bout. At first we thought that he just had a bad run with some viruses as we live in a place where some pretty nasty viruses present.

But when they kept coming and the fatigue was not lifting in between the times of sickness, and he lost his bubbly, cheeky self saying things to his brothers like “believe me you don’t want to be 10, it’s just too tough”, we just knew we had to do something. So back in May we took Elijah to the doctors and explained what was going on. They ordered blood tests and it came back positive for Ross River Virus. At least, we thought, now we have an answer and he should improve over time.

But that was not to be the case. For a week after the test, after much prayer, Elijah felt the best he had in a long time. He even commented “Mum, I think Jesus has healed me”. And that is what appeared to have happened.

Until one night, he complained of a tummy ache and went to bed to the most violent vomiting we had seen yet. He was up for half the night and then ended up lying on the couch and fell asleep. He slept through the entire next day. Even with the other boys yelling and playing as normal in the house. I tried to rouse him a few times to get some fluids in him, but he didn’t know where he was and who I was. He couldn’t handle light. He had a temp. I was glad he was sleeping as I knew he needed it, but I was worried he was confused when he woke.

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In Alice Springs hospital

Then in the evening a rash came out first on his face and then on the whole right side of his body. We had been holding off taking him to the hospital, as they usually send us home and say if they get worse bring them back blahblahblah… But once the rash came Ben carried him (still sleeping) to the car and took him to the hospital.

And there Elijah stayed for 5 days. His eye became bright red, and he couldn’t handle any light. He looked grey and couldn’t walk. They thought at first it was maybe meningitis, but they ruled that out. Then the tests began. Multiple blood tests, specimen tests and a small skin biopsy. But nothing was showing up. We had so many people praying for us and our church family came and visited. Was a wonderful time for seeing the body at work, even if it was a terrible time in other ways.

I kept expecting to call the virus card, as doctors do when there is no answer. But the doctors were amazing and thorough and for once in my life took me seriously. He got well enough to go home even though he still had a high temp and his eye was no better the rest of the symptoms had subsided. He had to wear an eye patch and his eye was not getting better, so when we took him back for his follow-up check he was seen by an eye doctor and diagnosed with uveitis. This is a common occurrence in people with an auto-immune disease which is where the doctors were heading with their testing.

The doctors here had exhausted what they could do from here in Alice so we were sent to Adelaide to the Women’s and Children’s Hospital. There Elijah went through a series of tests and they ruled out so many things that had been suggested. After 10 days in hospital there, we had come up with no answers . However he had begun to gain weight again, which is great as he had lost about 8kgs since the start of the year. We could feel the prayers of our brothers and sisters in Christ and were so well supported with many visiting to sit, pray and chat (not to mention bring chocolate and lollies- have I said thank you 🙂 ).

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The barium swallow test

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Goolwa Beach

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Day leave from the hospital

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When his brothers arrived

 

One family in particular, who have so may of their own struggles they are facing, were so beautiful in the way they ministered sacrificial love to us. They opened their home to the boys and Ben who had driven down from Alice so they could stay near us in the hospital. The family also offered for us to stay a few days down at their holiday home before we returned. This was a blessing and so much needed. It was the middle of winter, but we all went in the beach. What a healing place it is. I miss the beach so much even though I love our desert home. We had some lovely time with Ben’s mum and grandma as well. Which I know the boys will treasure forever. We always try to make the best out of a bad situation . We managed to have some great laughs and made some awesome memories.20140729_092655

Our ride home. .Elijah was so excited to finally be going home

Our ride home. .Elijah was so excited to finally be going home

We returned to Alice no wiser than we left, and hopeful and prayerful, that maybe he would just begin to improve as he had extended rest. He appeared so well, but that was because he was able to rest all day.

Since we have been back home, he has gained 2kgs and has had more energy than before. He had been generally well, though still feeling nauseous, and fatigued but not enough to slow him down as before.Until last night when Elijah once again began vomiting and high temp and today can’t leave the couch. He is definitely not as bad as he was before which is a plus but it is wearing to know that the battle isn’t over.

We are grateful it is not some of the diseases that the symptoms were pointing to and we have seen the hand of God in this time, but it has definitely been a struggle and has made it harder to have the same energy for the ministry we are a part of here.

We thank you for all who have, and will, pray as we continue down this journey. It continues to be a mystery. Our hope is in our God who is faithful and carries us through every circumstance. The steadfast love of the Lord never ceases!

Elijah’s eye is fully recovered and the eye doctor said yesterday that it has no scarring and so good that you can not even see that he had ever had it. We are so blessed to live in Australia. We have an amazing health system.

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