Just to quickly explain my absence. After another month in hospital, Dominic aspirated after managing only a few days at home. He deteriorated very quickly and ended up being blue lighted to resus at his local hospital. His saturations were barely managing to stay at 50% off oxygen and he was agitated and exhausted. They tried and failed CPAP (assisted breathing) over night and had to keep him sedated just to keep his oxygen mask on. The x-ray showed his left lung completely white and his right lung half white. The next morning (on the 6th March) the decision was made that he was too tired to carry on, and a specialist team was rushed in to intubate him. It took four hours. I recently found out it was because his was deteriorating so quickly they were struggling to breathe for him. He got blue lighted to intensive care at the Evelina children’s hospital. His outlook was very bleak. He was on maximum pressures on the ventilation and needing 100% oxygen to keep him at 70% saturation. He had no room to get any worse. Both his lungs were now completely white and very stiff. He got diagnosed with severe acute respiratory distress syndrome (ARDS). Things looked up a tiny bit for one day, and then he got a tension pneumothorax (his right lung collapsed). He went down hill, they could barely ventilate him, and a Dr called Marilyn asked us to come somewhere more private with her. I refused. She basically told us that Dominic would die and that we needed to prepare ourselves as she thought he only had days left. They also thought they could see bowel herniated through his stomach on the x-ray, if that was the case, the bowel would die, and so would he. We had to call the family and ask them to come and say their goodbyes. I won’t go into how it felt to be told that or how it feels now to write about it. It’s still too raw. I remember screaming though.
He was very, very swollen, partly from being ventilated, partly from a different type of ventilator not working and air leaking out of his lungs into his skin. I remember thinking that I couldn’t say goodbye to this child in front of me as he looked nothing like Dominic, and he smelt nothing like Dominic. I put up a picture of him to show the nurses how he should look, and whispered and cried into his hair that he couldn’t die, and promised him a better life if he would just fight. When I told the nurses that he was a fighter, they just looked at me with a sad smile, I’m sure they’ve heard it from thousands of desperate parents, all trying to convince themselves that their child wouldn’t die, couldn’t die.
Dominic did fight. He spent ten days ventilated fighting for his life and the little boy who was given no chance pulled through and was extubated not needing any oxygen. It was thanks to a Dr called Shane Tibby who changed his ventilator settings, the physios who sucked up all the infection that was blocking his lungs and Dominic whose will to live was stronger than the sepsis, ARDS, pneumonia and surgical emphysema that tried to take him.
I asked that he was fed via an NJ tube with his stomach on constant drain to prevent it happening again. It was a very frail little boy that was eventually transferred to Great Ormond Street hospital’s respiratory ward. When the swelling went down he only weighed a tiny 5.8 kg. He stayed there and on the long term ward for the next 3 months (and grew to 7.6 kg) until they eventually operated on the top and bottom of his stomach (Nissen’s redo and pyloroplasty) and took another muscle biopsy. His recovery was quick, but feeding was never easy so he was transferred to his local hospital. It looks like the end is finally in sight. He is having his gastrostomy extended to go into his bowel so feeding will be easier for him. At the moment he only weighs 6.26 kg. We’re on home leave this weekend, and both of us are a bit shell shocked having not left the hospital for so many months. I’m hoping we’ll be home for good next weekend, but am questioning my ability to cope right now.
I think your view of your children changes immeasurably when you come face to face with having to truly examine how you’d feel if they were taken away from you. I never want to go there again, but face it daily with Dominic’s many problems still needing a diagnosis. If I have time I will go into a little more detail another time, but for now I just wanted to explain my absence, and tell you why I don’t think my life can ever be the same again.
Comment #1 By TLL Renata, I am so sorry to hear the struggles you have gone through. I read all your updates and think of you often. Dominic sounds like such a fighter, I was so worried that this story wouldn’t have a happy ending, but I am glad that he is doing as well as he is now. Best wishes to you and yours. —–
Comment #2 By Leighann K Gosh, I just want to give you a big hug. I am so sorry for all you’ve been through. I cannot imagine. Your sweet little boy and your family are in my prayers. —–
Comment #3 By KAB I was just thinking about you the other day and hoping everything was ok with Dominic. You and your family will be in my prayers… —–
Comment #4 By FamilyReflections I’m so sorry you and Dominic have been going through SOOOOO much! He is such a little fighter and this factor along with having a wonderful mommy has helped him overcome so many physical challenges. This has got to be taking a toll on the other kids as well. Hugs and God Bless. Tanya —–
Comment #5 By Pamela S I’ve been worried about you and Dominic. I can’t imagine the rollercoaster of emotions that you have been through. My heart was breaking reading your words today and I am so glad that things seem to be looking up for him. What a terrible ordeal you have all been through! Many hugs and positive thoughts to you and that strong little boy! —–
Comment #6 By Quamie Renata I am not sure what to say exepct I am so glad tha Dominic pulled through! You hang in there and I will continue to pray for your and your family. I cant even begin to imagin how hard this is for all of you. —–
Comment #7 By Mama’s Family Oh my God…I sit here barely able to breath with tears streaming down my face…you and your family have been through so, so much. Please know that I (along with so many others here) am thinking about you and little Dominic. Big hugs and please keep us posted. —–
Comment #8 By tysmom Renata, I check often to see if there are any updates on Dominic…..I can hardly believe what he has had to go through, and what you and your family has had to go through. Know you are your son are in my prayers. —–
Comment #9 By ColleenG Oh my gosh. I’ll be saying prayers for Dominic and your family. It sounds like he’s one heck of a fighter!! I pray he makes a quick recovery and they find out what it going on with your precious baby. By the way, I read your post and had to go hug my kids so tight. You made me realize how incredibly lucky I am. Thank you for that. —–
Comment #10 By SarahRN I took a year or two off from this site and had no idea what had happened with Dominic. I read your past entries and what you have suffered over the past year is unbelievable. I don’t know how things are in your real life right now but just know that we are all here for you any time you log on and need an ear or an eye. I can’t imagine what it must have been like to go through these past five months and I can’t imagine what it’s like not knowing what each tomorrow is going to bring. I’m in the medical field and just knowing what I know I can’t believe Dominic got through all his illnesses nevermind the ARDS. I was sure that first paragraph was going to end tragically. Your baby is one in a million, truly. You must be incredibly drained by now…I hope you’ve had some sort of support through these months and I’d love to hear that Justin grew up and stood beside you but I’m not holding my breath. No matter what you will always have support in this site, from us oldtimers to the brand new journalers. Big huge hugs to you Dom, Lilia and Elliot. —–
Comment #11 By feather Oh Renata – you don’t know me but I have been reading your blog for quite some time now – I just wanted to tell you I am praying for your little one – he is a true fighter and you are a wonderful mom BIG BIG HUGS to you. —–
Comment #12 By Blissful Thinking Oh Renata…..I have been checking on here every few days to check for an update. I think of you so often. I had to scroll to the bottom of the post before I read it to make sure that he was okay. I am so so so sorry you had to go through that, no mother should ever have to face that. I am so happy for you that he pulled through. He must be such a strong little boy. I cannot imagine how difficult it has been for you to be away from your other kids, as well. I find it appalling that they haven’t managed to get him a diagnosis yet. What happened with the first muscle biopsy? I wish so badly that I could reach through the computer and give you a hug. Please do whatever you need to do for yourself to stay healthy and get rest during all of this. That little guy is so lucky to have you for his mother. Hang in there. Lots of hugs and best wishes, Mary (Blissful Thinking, JamiesMom) —–
Comment #13 By inHIStime Thank God for blessing you with a little fighter! He is amazing and so are YOU! —–
Comment #14 By BSalzie Goodness, Dominic certainly is a fighter. I’ll certainly be keeping you and your precious boy in my prayers (as well as the older two). —–
Comment #15 By ChrissieF I’m sorry to hear about Dominic. I am thrilled that he has pulled through and is still fighting to get strong. My prayers are with your family. —–
Comment #16 By AinsleysMom I can’t even imagine what you’ve been through over the past months. I was just thinking about you and Dominic and I thought I’d check up on you to see how you guys are doing now? I hope that all is well and he is doing as well as can be expected. *hugs* My thoughts are with you and your family. —–
Comment #17 By Blissful Thinking Hey there, just thinking about you guys and wondering how Mr. Cutie is doing. I hope all is well. Please update or pm me at my Blissful Thinking journal when you get a spare sec (which I’m sure is rare with 3 little ones). Lots of hugs to you. Mary —–
Comment #18 By CherylS I’m just a lurker, but I thought I would leave a message for you in hopes that all is going well. Your loyal readers are thinking about you. God Bless. —–
Comment #19 By MUM 3 BOYS You are in my prayers i will pray for you and your tiny little fighter. I cant even begin to imagine hoe difficuilt the last months must of been for you. God bless and i will get my boys to pray for Dominic. Hugs Gwen. —–
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