Today: T+11


International Nurses Day today, and we as a family appreciate the nurses of the world.

We appreciate them spending 2 hours to change the dressing on Seth’s hands because it is too painful to rush.

We appreciate them taking the time to explain what they are doing and why.

We appreciate them taking the time to make sure we, the parents, are ok. (even though that is not their job).

We appreciate them dealing with traumatic events and then coming to our child and putting on a brave face.

We appreciate that if they are worried, or panicking, we don’t know about it.

We appreciate them making Seth laugh playing with him and building his trust so he is happy for them to do their work. Making this all that bit less stressful for him.

We appreciate them working constantly hard for their 12 hour shift to make sure Seth gets the drugs he needs. Seth is currently require 12 intravenous medicines per day. One of these is 24 hours a day, another 20 hours a day and quite a few are more than once a day. The shortest is half an hour but the rest are all an hour – and that is without a flush. All this with only 2 lines and a child that often needs little extras such at blood, platelets, magnesium, potassium and the like.

We appreciate them answering our seemingly never-ending questions;  going away and getting us an answer they’re unsure of, and not telling us what we want to hear because that would give us false hope.

We appreciate them taking a later break because Seth’s in pain

We appreciate them taking the time to learn about a child with complex health needs and adapt their practices to keep them safe.

So thanks to all the nurses in the world. You’re doing alright!

Today we returned to our bubble – as a BMT parent it is the place you feel most safe. But mainly it is nice that we were able to come back as planned. The trial Seth was on is a 4 day trial so was always planned to end today, however, if Seth had needed intensive care he would have stayed there. It’s always nice not to need it.

The numbers in his blood (liver, kidneys, inflammation etc) are all good. They are not perfect and won’t be for a long time, but for Seth on day 11, they’re not getting worse and that is a good thing.

The hair is gone now. It starts falling out slowly and then just falls out in clumps. When it began falling out more it was long and patchy so we asked the play specialist to come and shave it off…..Seth though she had taken all his hair and made him bald! Haha – until I reminded him that the medicine would do that and i got a sigh and “o yeah”. Today we showed him what his head now looks like and he says he quite likes it! Hopefully he will also be happy when it comes back!

His skin is starting to setting, it is quite flaky at the moment and his ankles, toes, heels, armpits and neck are still sore to touch but slowly getting a little less angry each day.

His hands are still so sore and the patches where the skin had become raw have now joined up. However, we had someone from Burns and Plastics come and see him yesterday and they have recommended a non stick dressing which has some silver in it that will help prevent infection. Unfortunately there is nothing more that we can do until the graft starts taking and he starts growing back the skin. In order to help him with the pain when we took the bandages off yesterday he was given some Ketamine and Midazalam. The really helped and he was not screaming in pain like he has been the last few times. But he had to have a bit extra Ketamine, which made me a bit sad because he must have been in complete agony the previous times for him to need so much medication to help him cope. Hopefully it will start healing soon. At the moment all we can do is try to keep it clean and infection free whilst managing his pain. Luckily when it is bandaged the pain is manageable with Fentanyl which runs 24 hourly.

Over the weekend we have been having Lymphocytes showing in his white cell count. This has been analysed and shows that Seth has 1500 T cells (Gamma Delta) in his blood. These could be the cells they gave from Nik as they only gave Gamma Delta cells. Also the Neutrophils have been coming in, but then going down again (0.03 then 0.01 then 0.3 today). Were waiting now with baited breath. Lymphocytes coming in before Neutrophils could be a sign that the previous graft has come back – therefore evidencing rejection of the new cells. Or they could be Nik’s cells floating around in the blood attempting to fix the things that are inflamed in Seth’s body. We just have to wait and see what happens and keep taking it day by day

28 thoughts on “Today: T+11

  1. Lesley says:

    Holding my breath reading this. I’m hoping day by day that little improvements will keep improving…. Spot on about the nurses. Takes a very special kind of person to be a nurse. Job well done 👏💛💛💛


  2. Sandy says:

    Leane, you are so precious. I love your tribute to nurses. Our little friend Gracie has SCID and her mother is a nurse. I always marveled that God placed Gracie in a home where her mom knew just what to do. I marvel now that God has blessed you with such knowledge and wisdom, and stamina as you care for your sweet boy. It’s good to here that there is continued improvement. I appreciate your detailed updates as it helps me to know better how to pray specifically for all of you. With much love for you all, Sandy


  3. Jack Ricau says:

    Glad to see that there is some improvement. Thank you so much for keeping us posted. I pray every day that he get better. You and your family are in my prayers. I know that Seth will improve a little every day.


  4. Missy Washburn says:

    Totally in awe of your nurses and the families they are caring for! Thank you for the update and sharing your precious Seth and time! Hugs from Memphis, Tennessee 😊


  5. Mitchy (Michelle) Leinen says:

    What a lovely tribute to the care that Seth is receiving daily. Thank you for the update Leanne. I am thankful for the specialists doing his bandages now. It just has to be agonizing seeing your little hero in such excruciating pain. Seth would be adorable with or without hair because he is the worlds cutest little boy!!! Day by Day!!!!


  6. Olivia says:

    That is great news to be back on the BMT ward. Always a good sign and thankfully he didn’t need the ventilation. You’re right to take it day by day because who knows what’s around the corner as all us who’ve been through it know. It sounds pretty positive though! Oscar continues to require gcsf for neutrophils. His didn’t come in until day 100+. All react differently and you’ll know yourself you really can’t compare two transplants. Still willing you on here and loys of prayers still going your way. I left a dvd up on the ward for you the other day. Oscar and I chose it because there’s a fish in it called Oscar. Hoping that Seth gets as much enjoyment as Oscar did. Thoughts and prayers continue to go your way.


  7. Dulce says:

    Bless his nurse’s!!! How thankful I feel for Seth having such a great and supportive team (parents and staff). Praying for those lymphocytes to be Nik’s trying to get their job going! Keep it up Seth! I’m sure you look very cute with your new look 😉✌🏼️💛💛💛


  8. Lisa Tagaloa (@lisatagaloa) says:

    Thank you for the regular updates LJ, Being in NZ I get them in the morning and when I read about everything you guys, especially Seth, have to fight through – it gives me a kick in the butt to get out there and be more xx

    As always – luvs, hugs and healing blessings to you all,

    Lis & Josh


  9. southern3wheelingsa says:

    I too appreciate the work nurses do – my mother was a nurse, my two daughters are nurses and they are in the profession because they do care.

    You are going through tough times right now, but hang in there, this will make you all a stronger family unit and one that appreciates the fragility of life.

    Live life to the max when Seth is well.

    Take care. xxxx


  10. angelkhandra says:

    Thank you to your wonderful nurses from me, too! It sounds like things are evening out a bit. I hope everything continues to improve! Seth is a superstar for all he has to go through, as are you and your family! Keep on hanging in there Seth! Love you love you love you sweet boy! Kimo says hi! You are in our hearts every day. And I’m guessing the bald head is great for superheroing, as it makes one more streamlined when flying about in one’s cape!

    Love from Kari and Kimo the dog in Minnesota 💛💛💛


  11. Miriam says:

    You are so strong i can’t even..I am so moved by what you go through and how you deal with it!I will pray for you as much as i can and i want you to know that God will be with you! You have my respect!!Your positivity is just amazing..


  12. Mon says:

    Reblogged this on Life of Mon❤ and commented:
    This post is bittersweet. They celebrate the nurses, Seth’s improvement, Seth liking his new shaved head 😀 but Seth’s body is rejecting new cells. I pray for all the sick children of the world. May they get well.


  13. lovetotrav says:

    Hugs and prayers from Cobourg, Ontario, Canada in the hope that Seth makes some improvement. Take care and I am relieved to know that the nurses you work with are so supportive.


  14. Michael says:

    Praying for this little man. He is such a strong boy. It breaks my heart he has to go thru all of this. Im glad he has a strong family to support him and a fantastic nursing staff. Im a fairly new father my son Jaxon is 1 1/2 and i cant imagine him going thru all of this. You all are VERY VERY strong people I pray that Seth will have a good recovery and be pain free The video on youtube of him playing with the nurses makes my heart melt. I look forward to seeing updates on Seths condition. Sending love from Alabama in the U.S


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