Today: T+9

So since my post yesterday there have been a few changes…….

Seth was on the CPAP machine again for 12 hours over night as part of the SCARF research.

He had the most settled night he has had in a while, and today has been maintaining his oxygen level WITHOUT the need for additional oxygen! He has been breathing a lot easier and his chest sounds better. Hooray! Towards the end of the day he did start to breathe a bit harder and needed additional oxygen when asleep. But its an improvement.

His cheeky little character is also coming back a bit and we sat on the floor to play paw patrol again today, although he again tired very quickly. He is just so determined not to be sick!

His hands remain sore but we are now only going to change the dressing every other day, and they have doubled the amount of pain relief he gets when he has a bolus. So that should help him a little with the pain. In addition he has been referred back to the tissue viability team who will know how best to dress the hands and ensure he is getting pain relief.

Fluid wise Seth is still retaining fluids, his genitals are less swollen, but he is puffy on his face and legs, and his belly is very distended at the moment. The doctors are continuing to monitor this closely and treating it with diuretics when necessary as well as giving him the minimal amount of fluid.

Being on the intensive care ward is stressful for Nik and I, and is creating some frustration and conflicting feeling (it may be that we are crazy BMT parents scared at leaving our safe little bubble!). Seth is doing well with the CPAP support and it seems to be helping him to improve. But we also feel like we may be compromising his safety in terms of infection. The nursing staff on intensive care are not BMT nurses and so work differently and have a different understanding to isolation nursing. So having Seth on the ward is a learning curve for them, but he is still not receiving the protective care he would receive on his normal ward. The strict isolation rules seem to not apply as much here, but if he needs it he needs it right? This may be fine and not an issue, but 9 days post transplant Seth is as vulnerable as it gets and we are worried.

Tomorrow we are going to speak with the relevant people to confirm what is absolutely necessary to protect Seth so that we can ensure that is happening. It may be that we are more cautious than needs be and he is already getting the level of protective nursing that he requires. At the minute Nik and I are feeling more stressed than we have throughout this process so we need to clarify and understand and then consider our options. As removing him from the research and back to his ward may be detrimental to his breathing and could lead him to need to be in intensive care, which would not change anything anyway.

Now….about that magic…….

It looks like engraftment has begun, he has some lymphocyte numbers coming up in his blood. At the moment that means nothing as they need to check further to see what is going on. But hopefully it is the sign that the magic is home and beginning to settle. This is good – it what he needs, but it may cause him to go backwards again before he starts improving. The new cells might go to all the areas we have problems at the moment and cause further inflammation trying to fix things.

So today was a good day…..tomorrow who knows were still taking it day by day.

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45 thoughts on “Today: T+9

  1. Sandy says:

    Praising God for the improvements, and asking for healing for your precious little boy. I’m also praying for you during these stressful days. Blessings, Sandy

    Like

    • Margo Hartley says:

      Yellow butterfly kisses, hugs and prayers. You are all doing this and we are all with you. It takes a village to raise a child. SuperSeth is our hero and we all stand behind and beside and around him and his family.

      Liked by 1 person

    • Somebody says:

      Sandy, would you mind telling me who is to blame for Seth having this condition in the first place? If God is to be praised for the improvement who is to be blamed for this poor child’s suffering? Who made him have that?

      Like

  2. Dulce says:

    Oh dear Lord! I’m so uplifted to hear about him watching Paw Patrol! It’s a sign he is better even for a moment. πŸ’› Your family is in my prayers.

    Like

  3. Dara says:

    YES!!!!! Words cannot describe how happy I am to read that he is doing better!!! I will be rooting for this little champion until the day I take my last breath! The tiniest inspirations leave the biggest impacts!!!!

    Liked by 1 person

  4. Lynda Ferrari says:

    Your such a little fighter Seth! Braver than I could ever be. Mum and dad, you must be so proud of him. My heart goes out to you all. Although I have never met you I think of you every day and love to hear how you are doing. Love and prayers to you all. Xx

    Like

  5. Dara says:

    By the way, happy mother’s day to you! I hope I can be as good a mom as you are.. To be strong, brave, selfless, and nurturing just like you..

    Like

  6. Renee Vires says:

    Happy Mothers Day Love πŸ™‚ and to Seth, Keep fighting little hero, my prayers and well wishes are with you πŸ™‚

    Like

  7. Walkon says:

    What a little fighter you have in Seth. Stay strong & you are 100% right to get the full understanding of the level of isolation you believe he needs. Everyone will just want what’s best for Seth. Take care x

    Like

  8. Jackie says:

    Ohhh Seth! Tell your momma Happy mother’s day! Stay strong for her and yourself and your beautiful family!!😚😚😚

    Like

  9. Linda. Valenzano says:

    I am a day by day kind of person, and I believe you are dealing with this in the right way. if you look at the overall of anything, it can consume you. I applaud your awareness to celebrate those improvements big or small, and the set backs, well let’s hope they are just the stepping stones for a better and better tomorrow for Seth. Happy Mother’s Day,, and I pray for, one Mother to another, that same time next year Seth is home with you, playing Paw Patrol.

    Like

  10. Missy Washburn says:

    Great news on the positives! And an ABSOLUTELY to you and your husband regarding even the tiniest concerns of isolation practices with your ICU nursing staff! You have all come so far that every detail of care matters to you …you both look to be incredible advocates for him; I am sure they will all give immense caution to your sweet boy. Hugs, support and prayers from Memphis, Tennessee πŸ‘

    Liked by 1 person

  11. Bruce says:

    You are all heros. Thank you for letting all of us follow you and little Seth On this critical journey. What a brave little boy. I’m praying for you all every day.

    Liked by 1 person

  12. Kristen Sicotte says:

    Do speak to the head of the PICU dept. It is important that everyone is educated properly for his car… You have every right to be concerned. They need to liaison with the BMT specialists. You may have to be mama bear about this but once they hear what your concerns are they will get it. I know in Canada they are huge on Quality Improvement/assurance and have special teams for this. Ask to talk to the head of the one in that hospital if you need to. PICU is very different from the peds Onc/BMT dept…so whoever is Seths main attending in BMT needs to be fully aware and should be able to help πŸ™‚ all the best!!!

    Liked by 1 person

  13. toby says:

    Keep going Seth you cool little man…. Seth’s mum n dad, you are both doing amazing, keep up the positive thoughts πŸ™‚

    Like

  14. Acacia2787 says:

    Praying praying praying praying πŸ’›πŸ’›πŸ’›πŸ’›πŸ’›πŸ’›πŸ’›πŸ’›πŸ’›πŸ’›πŸ’›πŸ’›πŸ’›πŸ’›πŸ’›πŸ’›πŸ’›πŸ’›πŸ’›πŸ’›πŸ’›πŸ’› sending our love to you guys. Hope tomorrow just keeps getting better and better

    Like

  15. amy says:

    Trust your instincts in your encounters with staff that may not be trained as well as needed post transplant/reverse isolation (I know,and that terminology is frowned upon now, but it is what it is.) As a Peds nurse,I welcome input and questions from my families, though in a vastly different setting (primary care.) My point? His precautions are there for a reason, and if they’re not being followed, he could be compromised. Not what you,or they, want . True caring professionals will not be offended by questions or concerns!
    Hopefully, his third spacing will decrease, his counts will continue to improve, and in all of this,he won’t pick up something to add to his list. Will add you all to my list of folks to pray for.

    Liked by 1 person

  16. Lesley says:

    Sitting on the edge of my seat reading this so can’t even begin to understand how nerve wracking and stressful it must be for you both. A good update….. Let’s hope there’s more to come πŸ’›πŸ’›πŸ’›

    Like

  17. Mitchy says:

    Leanne you and Nik are totally entitled to your feeling the way you do!!! Seek out the answers you need. Added stress is definitely not something you need at this moment. Every little improvement our little hero makes is a blessing! ! We so want a healthy little boy soon!!! Hugs to the
    little fighter and Happy Mothers Day to you!!

    Liked by 1 person

  18. LoriDeFrias says:

    Happy Mothers Day Leanne! I am in awe of you and your husbands strength, resilience and courage. I know all of that is inside Seth as well. I pray for him and your family every day.

    Like

  19. Kathleen Wyatt says:

    Hi guys loads of love to you all.Seth is such a champion,be proud of the parents you are.πŸ’›πŸ’›πŸ’›πŸ’›πŸ’›πŸ’›πŸ’›πŸ’›πŸ’›πŸ’›πŸ’›πŸ’›πŸ’›πŸ’›πŸ’›πŸ’›πŸŒΌπŸŒΌπŸŒΌπŸŒΌπŸŒΌπŸŒΌπŸŒΌπŸŒΌπŸŒΌπŸŒΌπŸŒΌπŸŒΌπŸŒΌπŸŒΌπŸŒΌπŸŒΌπŸŒΌπŸŒΌπŸŒΌ

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  20. Manny says:

    Happy Mother’s Day! You are an inspiration! God bless you and your beautiful boy. Thank you for sharing your journey with us.

    Like

  21. angelkhandra says:

    Mummy and Daddy, you are incredible advocates for your little hero! Ease your minds and hearts and seek out the answers you need to rest easy. You deserve that and so does Seth and he is so lucky to have such wonderful parents! I’m glad to see there is some improvement in his oxygen levels and that his cheeky personality is shining through all of the pain and suffering. He has such a strong spirit! I keep seeing two of the photographs you posted some days ago in my mind and they warm my heart every time I picture them – the one where you three are all together and sticking out your tongues just gives me such a strong sense of your bond and love for each other; the other is the “Seth pretend grumpy face” when he didn’t want to take a bath! That one just makes me laugh and seems to embody his mischievousness. What a goof! What a delight for you to have such an incredible child in your lives! He is inspiring people all over the world and I feel so honored that you share his story with us.

    Seth – Keep hanging in there little buddy! The magic is trying to do its work!

    Sending you love and hugs from Minnesota,
    Kari and Kimo the dog
    πŸ’›πŸ’›πŸ’›

    Like

  22. lesliesantos says:

    Awe, wow hallelujah! Thank you for this encouraging update on our little hero. How proud you are to be the Mum of this little fighter and little Hugo. Happy Mother’s Day. You have passed your amazing strength of character to your sweet, sweet babies
    Much love Leanne and Nik
    XOXOXOX πŸ’›πŸ’›πŸ’›πŸ’›πŸ’›

    Like

  23. Sandy Kalpakoff says:

    Continuing to know all these collective prayers from all corners of the world for Seth and your family will bring the results we are asking for and are being heard by our Lord God. Sending love to your little man-he is my hero. Hugs to all.

    Like

  24. Jenny Bartlett Strain says:

    I’m so happy to hear about Seth’s improvements, as he has huge hurdles to jump! You are all such inspirations and the finest examples of patience, love, support, and nurture. I honestly don’t know where you draw your strengths from and perhaps it is truly the love you and your husband have for Seth that keeps you going. Be sure and tell Seth that he has so many people around the entire world praying for him. You are all in my thoughts and I will continue to pull for your precious Seth. You have a real fighter in Seth! I can hardly wait for the day when you are all home together and this will all be a miracle, but a distant memory! Big hugs and kisses to all of you from Charlottesville, Virginia! πŸ’›πŸ’›πŸ’›

    Like

  25. Helen Austin says:

    Seth your an inspiration of a fighter, your a strong little man to endure all this, my prayers are with you all… Wearing yellow for you and thinking of you and the family. Love Helen in Australia xxoo πŸ’πŸŽˆπŸ˜‰

    Like

  26. wesley bill says:

    Any progress is good progress.

    Sorry little man,won’t see anynews till I get from my overseas trip

    Hope u get loads of good news

    And Tonns ofnpqw patrol time x

    Wes

    Like

  27. Katy says:

    To tears to know that finally there is the positive. I hope very much that it will continue to get better for Seth. I think you have very strong. Millions of kisses from France ❀

    Like

  28. Kathy says:

    Hi Seth …It’s me Kathy again from Canada, just wanted to say HELLO, from me and my two boys. πŸ™‚ The Snow is all gone here now, and the sun is finally out. I hope you have a big window in your room so you can see outside. The boys are sitting right here beside me now as I am writing to you and want me to say a BIG HELLO !!!! (They are 9 and 10 years old) There names are Philip and Ben πŸ™‚

    Say Hello to your Mom and Dad for us, and tell them that we pray for You and your family. Hope that you feel better real soon Seth !!! You are #1 ……..I wish that we got Paw Patrol over here on my TV station, but we do get Fireman Sam here, he is a Great Guy !! Do you want to be a Fireman when you grow up as big as your Dad?

    Well you have an Awesome Day Seth !!! Lots of ((HUGS)) from Canada

    Kathy, Philip & Ben

    Like

  29. Jenny Bartlett Strain says:

    Mom and Dad, how are you both doing? I posted late last night and you’ve all been on my mind so much. Although I am all the way across the pond in Virginia is there anything I can do to help? Is there something I can send to you both and to Seth to make things a little easier? You are wonderful parents and you are raising a beautiful and happy child. This whole experience will hopefully be behind you all soon and you will be the stronger for it. I’m so sorry that you have all had to deal with so much that would have made most people feel sorry for themselves and given up. Seth was put in your life for a reason and what a magnificent man he will become because of your strength and his! If I could send some things to you all would you email me and let me know? (cjstrain@yahoo.com)
    You’re in my daily thoughts and you have all touched my heart forever. πŸ’›πŸ’›πŸ’›

    Like

  30. Linda swift says:

    Sending big yellow stars to watch over you. Get better little hero. Thoughts and prayers are with you and your family βœ¨πŸŒŸπŸŒŸπŸŒŸπŸ’«πŸŒŸπŸŒŸπŸŒŸβœ¨

    Like

  31. Olivia says:

    Keep strong Seth x You’re in the same room Oscar was in in picu, his room on Ward 3 and had your second transplant on his 4th Birthday. I am sure that is a positive sign. Mummy and Daddy, thinking of you all x Hopefully will get to meet you all at a reunion x

    Like

  32. fulya akipek says:

    I pray/wish protection everyday for my girls when they are leaving for school and also for Seth. I believe that all of this positive energy coming together will have a meaning soon.

    Like

  33. Irene says:

    Dear Lil Hero,
    If I could only take away all your pains…
    O Lord, please give him healing,
    Restore him day by day.
    Renew their (Seth’s family) hope and dry their tears, i love you Seth you’re always in my mind.

    Like

  34. SΓ­lvia Graell says:

    Hello Mummy and Daddy. You are doing right. Our family think of you everyday, I believe that all of this positive energy will help Seth to improve son. Kisses from Barcelona.

    Like

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