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Let's Show Our Love & Support for the Ramos Family

  • Update from Mum and Dad

      4 August 2017
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    Moving Forward...

    Almost a month has passed since our last post so we have lots of updates for you!

    We celebrated Adan's 4th birthday with a Moana party on the 23rd of July. Our friends including some of his nurses came in dressed in Hawaiian or Moana outfits. A big chocolate cake was shared with the PICU staff - it was a huge cake and was able to cover two shifts in PICU. It was a very special birthday celebrated with special people in Adan's life.

    Our family and closest friends are aware that a DISCHARGE MEETING was scheduled today. You all heard it right...Discharge Meeting. Just to keep everyone's excitement level on the right track, it will still take some time before we can actually go home because of two things. First, Ian and I need to complete two more items in our list of things to learn and second, we need to recruit for a night carer for Adan at home. This means that Ian and I will manage Adan during the day (as we have been since he was born), but will need another person to manage him at night as there is now the danger of him pulling his tracheostomy.

    The gist of today's Discharge Meeting:

    1. Adan will move up the wards on Monday, 7 August. Ian and I will look after him during the day and another person to be hired by ADHB (Auckland District Health Board) will look after him overnight (while we are at the wards).

    2. Ian and I to finish our training by Monday.

    3. ADHB to recruit for a night carer for home (could be the same person who will look after Adan starting Monday night in the wards). Our timeline for going home will depend on this.

    4. No renovations to be done at home at this point as we are still able to carry Adan up and down our house because he has been off the machine since last month. Meaning, it would be just like before when we would carry him in and out of the house.

    So we do not have a date yet for going home but at least, after 88 days, we are now looking at moving forward.

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  • Day 60 Update from Ian and Angela

      7 July 2017

    Day 60: Here are the latest updates on Adan and the family. It has been a while since we posted an update because Adan has kept us so busy with lots of progress!

    First off, he is now off the ventilator (yes, off the life support) for a few days now. He still has the tracheostomy which allows him to use the Swedish nose (basically like an artificial nose that is humidified) that acts like a cap to make him mobile when we move him around. He also goes on the airvo, a machine that provides humidification, when he is not on the Swedish nose. Ian and I are going through a lot of teaching from Adan's medical team as we need to be able to manage his tracheostomy on our own.

    Secondly, Adan is also starting to eat again! His Speech Language Therapist and Dietitian are working together to monitor his swallowing and feeds and so far, he has been able to eat yoghurt and ice cream and take sips of water.

    In terms of logistics, the rest of the family has been given a room at the Ronald McDonald House so we are always closer to Adan. This means that we are now saving a lot on petrol, time and energy so we can spend more time with Adan and assist with his recovery. Ian and I are also busy dealing with a lot of people from the hospital and third party agencies who are all involved in preparing us and our house for when we bring Adan home.

    We would like to thank all of you for your love, prayers and support. The financial help you have extended has provided us with petrol and meals over the past two months. The rest of the funds will now be used to help us with the renovations/modifications that need to be done at home to accommodate Adan and all his new equipment. We will post home modification updates maybe in a few weeks' time. May the Lord bless you all abundantly.

    A video of Adan with his PT and OT during mat time yesterday is posted on Mum Angela's facebook page. He is back to his normal, happy self, who loves music and play time.

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  • Latest Update

      21 June 2017
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    Update from Dad Ian & Mum Angela

    Dear Family and Friends,

    We have now spent 43 days in Paediatric ICU. It has been a roller coaster of emotions, but at the same time, a great experience of assurance that we are always surrounded by people who give us a sense of hope and victory in this most difficult situation.

    Our little warrior is due to have a tracheostomy surgery tomorrow, Wednesday. Essentially, a breathing hole is to be placed in Adan's neck to replace his breathing tube. The tracheostomy can stay for as long as Adan needs it. Yes, we now have a long term plan.

    We have come a long way from 3 weeks ago when they said we might not be able to bring Adan home to now being in the early stages of a "discharge plan" from our point of view. Ian and I will have to do a lot of training (aka Trachy University) until we are confident enough to be able to manage Adan on our own.

    We ask for prayers again for Adan's surgery to be free of complications and for physical and emotional strength for the family. We are thankful to all of you for continuously holding us up with encouragement and support.

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  • Update from Dada Ian and Mum Angela

      9 June 2017
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    When An Abnormal Result Becomes A Silver Lining - update from Dada Ian & Mum Angela

    This morning, Adan's neurologist explained to us the results of yesterday's nerve conduction and muscle tests. She said the tests showed abnormal results but that actually gives us a sign of hope. In simple terms, Adan's nerves and muscles are "sick," but as he regains his strength, the nerves and muscles should also get better. The doctors are expecting to see more movement from Adan. True enough, during today's assessment, his neurologist noted that his ankle, wrist, bicep and tricep reflexes are back. There is no timeframe or guarantee as to when and if all his movement will return, and if he can actually be able to breathe and swallow again on his own, but we are all happy to know that in this gloomy cloud we're in, there is a silver lining.

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  • From Mum Angela

      2 June 2017
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    Update from Mum Angela - Well, the MRI yesterday did not change from last week, except that the swelling in the brain has subsided. The damage remains irreversible. When I look at him and he's watching tv or looking at the iPad and smiling at us, he doesn't look sick at all. The only difference is that he's not moving his arms and legs and that he has the breathing tube. We don't know the plans yet from here, and if there is even a long term plan at all. We just surrender everything to God.

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  • Update from Dada Ian

      28 May 2017
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    Adan isn't speaking now, but he spoke to me last night through Psalm 27. He told me that this fight isn't over yet. That I should be strong and take courage and wait for our Lord to orchestrate His miracle. That I will see that our Lord is good and that there is still hope. It's not over yet. I will keep fighting with Adan, because he remains fighting until this very moment. He is not giving up. Yesterday, he coughed a few times. He hasn't coughed in 2 weeks. There is still hope. God is still good. Keep fighting Little Warrior!

    *Photo taken last April 2017 during our trip to Rotorua.

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  • Update from Mum Angela

      26 May 2017

    Yesterday was the most overwhelming day of our lives. We were told that Adan has suffered damage in the lower part of his brain that controls his movement, including breathing. We will do a repeat MRI in a week's time to see if the swelling subsides. The doctors were very honest with us in saying that there is only little hope left. We ask for prayers for comfort for Adan and the rest of the family.

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  • Adan's 1st Cuddle with Mum after surgery

      21 May 2017
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    Day 12 after surgery, Mum gets to cuddle Adan! Orthopaedics has finally secured Adan's (lower half) cast so he is now easier to move around. He has been off his breathing machine for two days now but his work of breathing is still higher than normal. He is receiving lots of physiotherapy (both from the hospital physio and mum and dada) to help loosen his upper airway secretions. The bloody stools have completely stopped so we are looking at starting his feeds again from tomorrow. Please continue to pray for complete healing and physical strength for Adan as we all miss hearing him laugh and play at home!

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  • Update from Mum Angela

      16 May 2017
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    May 16th 2017

    Eight days after Adan's hip surgery and we are still in Paediatric ICU. The chest infection has started to clear because his breathing is a lot better now. The removal of the upper part of the cast has been a big factor in helping Adan breathe better. Numbers are all stable now but we have been dealing with bloody stools for the past 3 days due to colitis (another complication that developed post op). They were initially looking at (another) surgery but we are thankful that it will not happen anymore as there were no ruptures seen in any of the imaging done on the abdomen. We have stopped oral feeds since Saturday to help his gut rest and heal. It is never easy to see your child unwell, but only by God's grace are we made strong to see the little blessings that each new day brings.

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