Thursday, November 14, 2013

The ICU Experience

*DAY +36 POST TRANSPLANT & 43 DAYS STRAIGHT IN THE HOSPITAL*

     Before I begin the post I am about to write, let me first share with you all how our little Hazelnut is doing.  As most of you know, she was finally taken off the ventilator yesterday!  She has tolerated it extremely well and it has solved many other issues, like her blood pressure and heart rate; so we are so happy to have come over this hurdle.  The last several days on the ventilator have been extremely difficult for Hazel (which I will detail below), and it has been such a sweet relief for the both of us to have that tube out!  She is still slightly sedated but we are coming down on those meds as well. Also, her bilirubin is is 2.4!!!!!!  Can you believe it?!!  After 2 weeks of going up and down and staying around 4, she has finally dropped to 2.4! All of her other numbers continue to look great and her weight is so close to the goal that we are so close to coming off the CVVH machine.  We just need her kidneys to function properly and the clot in her bladder to keep breaking down so she can begin urinating on her own.  Last, but certainly not least, the numbers for her BK virus and Epstein Barr virus have both finally come down within normal range!!  This means her immune system has finally gotten strong enough that it fought them off on it's own. It also means that her bladder will not produce new clots and will no longer be as agitated as it has been (it just needs to clear out the old one!). Such sweet joy!  Thank you all so much for your prayers. God has been so faithful to us in this time.  We could have lost our daughter and He has given us this MIRACLE through your prayers.  I am reminded of 1 John 5:14-15: "And this is the confidence we have toward Him, that if we ask anything according to His will He hears us.  And if we know that He hears us in whatever we ask, we know that we have the requests that we ask of Him".  Our mighty, powerful and loving Father has inclined and heard the cries of our heart, and has felt every tear and is healing our little Hazelnut.  So please keep praying that He continues to do so, because her battle is nowhere near over!
     Now, I want to take this opportunity to share with you all what it has been like in the ICU these last two weeks.  I don't want to shy away from the agony we have felt, because Hazel deserves for the world to know what we face every single day.  The unfortunate thing is that so many do not what the world of childhood cancer is really like (I was included in that group before we were thrusted into this).  It is either too painful for some to face the facts that children are fighting for their lives, sometimes winning and many times not; or they are just simply unaware because there is not enough support & funding behind our cause.  When there is a mass shooting, the world is drawn to attention and demands that the shooter be found and brought to justice (justifiably so!).  But cancer, and it's subsequent toxic treatment (let me remind you that we are in the ICU, not because of her cancer, but because of the life-threatheing side effects from her cancer treatment), kills 7 children each and every day of the year; and our society at large does not seemed nearly as outraged.  So my hope and prayer is that by being completely transparent about our experiences, that others may share in our frustration and be moved to spread the awareness.  So here we go...

  • The first few days were probably the most overwhelming.  We saw our daughter struggling for her life and swell up like a balloon.  She had 6 different tubes placed in her body and was put on a ventilator due to the fluid in her lungs making her unable to breathe well enough on her own.  There was always tons of people around and we were inundated with information about machines, drugs, procedures and outcomes.  The biggest worry was that her body was going to go into sepsis. This was also the time we were told that if her bilirubin continued to climb and her liver fail, there was nothing more they could do for her.
  • Every day, up until this past Monday, she got a chest X-ray. She also received more ultrasounds of her kidneys, bladder and heart than I can count.  She has continuously been on the CVVH machine, ventilator, and insane cocktail of medications infused through all the different tubes in her body, all while getting her blood drawn several times a day.  She also has a catheter placed that was being flushed every 2 hours (we are now down to every 4 hours), to help break down the clots in her bladder.  As I am sure you can imagine, this was never easy or comfortable for Hazel.  She is also weighed & has her belly measured each day and has her mouth cleaned three times a day.  She also had to be suctioned several times a day through putting as tube down the ventilator to the back of her throat (which was very uncomfortable) because with a breathing tube, one is unable to swallow.
  • Each day she is seen by a plethora of health care professionals.  This includes: nurses; ICU residents, fellows & attendings; Oncology residents, fellows, nurse practitioners & sometimes attendings; respiratory therapists, pain management team; psychology team; and our core team of people including Dr. Tran (her oncologist) and her care manager and BMT manager.  In addition to all of these people though, so many nurses and other hospital staff who have come to know and love our little Hazelnut have come down to visit and offer their support and prayers.  It's been truly remarkable and encouraging to see that every day.  We have so many people pulling for her!
  • On top of fighting for her life with the VOD and struggling through the two viruses that have been causing unfortunate complications, she has also suffered some other issues.  Her skin has been breaking down, causing peeling in many areas of her body.  One time, when the tape on her face was being changed, it ripped off quite a bit of skin.  All of these places with breakdown have to be cleaned and protected with ointment because they could easily cause an infection that could be detrimental to her.  Sometime in the second week, her IV in her hand stopped working and had to be replaced.  Each time, Hazel has to be poked (one time it took four pokes in four different places to find a good vein) to get another IV in, and even then they have only been lasting about a day.  Finally yesterday she no longer required it! 
  • Also in this second week, Hazel began tolerating her sedation medications and she was becoming more and more aware of her situation.  Not only that, but the levels of opiates in her body were causing hallucinations, anxiety and tremors.  Over the last four or five days, and up until yesterday, it had gotten to an unbearable point for both Hazel and myself.  This was when I wrote the last blog and could not bring myself to write anymore.  She has been trashing about in her bed, throwing out her arms to grab hold of me and has had a look of pure terror on her face.  She also was so unbelievably frightened by the breathing tube, bringing her to a point of choking on it throughout the day and night, sometimes making her change color.  We ended up in a vicious cycle of having to give her more sedation meds to help her deal with the fear of the breathing tube, but the sedation meds were also causing anxiety, hallucinations and low blood pressure.  I have knows for days that the best solution was to get that tube out and allow Hazel to be conscious enough to receive comfort from me.  But of course we had to go through all of the red tape before this could happen.  We were all ready to go at 8:00 yesterday morning to have her extubated, when her blood pressure dropped.  This made the doctors fear her heart could not handle being off the breathing tube.  So we had to run tests and do a heart ultrasound before being able to move forward.  Once that all came back okay, and we were once again close to extubating her, her oxygen levels dropped.  After hours of watching her closely, it was determined that the oxygen levels were directly correlated to the times of anxiety, thrashing and choking.  So finally, at 5:00pm yesterday, her breathing tube was removed!!  Immediately, we saw a rise in oxygen levels, a rise in blood pressure, and her heart rate came back down to normal.  Praise God we got through this hurdle, because this was one of the most difficult things for me to watch my baby girl go through.
  • Today, Hazel is so much more comfortable off the breathing tube, but she is still dealing with some tremors and anxiety.  We have weaned her off most of the drugs and have her on an anti-anxiety medication to help ease the transition.  I have been using as many natural things that I can in this situation, such as massage and aromatherapy (part of the natural remedies we have been using to support her through treatment).  And although it is better today, it has been very difficult to manage.  But I continue to remind myself that Hazel is alive(!) and we will get through this; it's just the "getting through" that is going to be hard.
  • I am sure that there has been more that I am forgetting, but one other thing that I want to mention are the things we have missed because of cancer and the need to be in the hospital:
    • Our wedding anniversary
    • Fourth of July
    • Grandparent's 60th wedding anniversary party
    • My birthday
    • My other kids' field trips
    • We were in the hospital for Elizabeth's first day of school, but I made sure to be there for that
    • Micah's 7th Birthday
    • Jonah's 1st Birthday
    • Halloween
    • Aaron's Birthday
    • And many more memories and moments...
     Needless to say, these past 43 days (and mostly the last two weeks) have been some of the hardest of our lives.  We are so ready to go home!!!

36 comments:

  1. Thank you for sharing and bringing awareness to this very important issue. I am so outraged that more isn't being done for pediatric cancer. It makes me so mad to see people wearing pink when our little ones are fighting for their lives with little to no support and little treatments tailored to their small bodies. I wish no child had to go through what Hazel is going through. I pray for little Hazel and hope one day she is out of the hospital cancer free and being the joyful spirited toddler that lives inside her.

    ReplyDelete
  2. Your little Hazelnut is one strong girl! She has been through hell the past couple of weeks and I just praise God that she is starting to improve. I pray all of the various transitions continue to go well and she is soon off all the medications and is completely aware of what is going on around her.
    May you continue to feel His presence blessing you with peace, comfort, strength, and healing. God Bless.

    Janet
    COLE's Prayer Team

    ReplyDelete
  3. You are right = no one really knows what these children and their parents, siblings, grandparents go through with someone who is so sick. All I can do is to pray for Hazel's complete healing and that Jesus will hold you I His Loving Arms and bring you peace.

    ReplyDelete
  4. We are very familiar with what you have been through as we lost s close family member from sepsis when cancer had spread. He was sn adult and that is why we support Childhood Cancer Research, because children and their families should not have to go through this suffering, but the Lord delivers to those who believe and have faith and I know he will continue to heal Hazel and she will be a living testimony of His miracles, in the name of Jesus Christ, Amen! Praise the Lord, we will continue praying!

    ReplyDelete
  5. Honestly, you guys are amazing. Thank you so much for opening our eyes to that side of life. That not a lot of people would see and understand. Shes a fighter, and shell keep fighting until shes running free like every child should be. You go baby girl u can kick this n show its whos boss. I pray everynight for you and your amazing family. Xox from canada

    ReplyDelete
  6. I was aware of childhood cancer from seeing St. Jude hospital advertisements, but never to the extent that I have seen with Hazel and following many other children on FB. Something indeed has to be done to get more funding for this cause and to find out why children are so susceptible to getting different types of Cancer. I see how traumatic it is not only for the child but the families as well and yes no one knows how it feels until it happens to you. I can only continue to pray and plead with the LORD for something to change or for him to come soon. Hazel is a spunky little girl and will fight this and win!!

    ReplyDelete
  7. Prayer Changes Things. May His blessings come over your daughter and your family like a flood. I look forward to hearing of the day you take her back home.

    ReplyDelete
  8. Thank you so much for the update. Hazel and you have come to mean so much to us. I knew she was in the fight of her life and could not imagine what you were going through. I understand your silence through that period. I pray for you both throughout the day and night. God loves your daughter, you and your family. He will not leave you. Neither will any of us "warriors." Asking Christ to keep you in his protective care.

    ReplyDelete
  9. Lauren, You are an inspiration to all of us. You might think that it is just part of being a mom, and, yes it is, but there are so many that could not have done this and others who just don't care. You are a breath of fresh air. Thank you for being their for Hazel. I'm sure that isn't much of a thanks. But our prayers have been non stop going in your direction. GOD has and is working not only with in Hazel but you as well. As far as the cancer goes, you are exactly right and there are children taken everyday and we are so complacent in our thoughts and understanding of this outrage. There are several great hospitals and organizations in this country that do what they can to alleviate this problem, but, it is an ever ending problem that deserves our attention but so few ever respond. Thank God that you are and will continue to be a sounding board for your cause. I hope to see you again someday and thank you personally for your mission. God Bless You and Hazel and your families. Craig Berg

    ReplyDelete
  10. God bless you! !!

    ReplyDelete
  11. no matter how much I read, or hear, I know it could never prepare me for the reality of what it is like to live through those days and nights of pure hell, fear, hope, faith, courage, near defeat, crying for the pain to stop for your child, seeing your child suffer and be helpless, waiting for each result of each test, being afraid to hear the current reports, walking in the room each day and wondering what could have happened while you were gone, or even to the ladies room. Your live it totally on hold, you hold your breath every moment and are afraid to breath, your eyes are sore from the tears you try to hold back, you head aches from trying to remember each thing the doctors and nurses and specialists tell you...your notebook gets so full that it looks like it is falling apart.......and your heart breaks for your little one who should never of had to go through this horrible hell called cancer. There is no way on earth that we can possibly know the depth of the courage and the power of a Momma when her child is fighting for it's live. She will move Heaven and Earth and everything in between to keep her child alive .....and Dear Lord I just don't know how they (YOU) do it, day after day after day. THe world needs to know, Childhood Cancer does exist!!!!! Childhood Cancer Does Kill!!!! Childhood Cancer Puts the Family Through Hell, physically, emotionally, financially. I Pray, I truly Pray that the Medical community gets the funding to work towards a cure for CHildhood Cancer because NO FAMILY SHOULD EVER HAVE TO SAY GOODBY AND BURY THEIR CHILD. Please Help by contributing to funding that supports the race for the cure of Childhood Cancers so that we will never have to even watch these families in pain. Dear Lord I Pray.

    ReplyDelete
    Replies
    1. I feel the same way, with every word you have written here...dear God please find a cure for Childhood Cancer, save your children, save them from this hell called cancer. Save little Hazel from all the pain she is having, please God save Hazel/jasmina from sweden

      Delete
  12. I pray that Hazel continues to improve and you all get to go home together. You all deserve to live a blessed long cancer free life. God has blessed you with such a wonderful little girl; and now with her improvement. I pray he continues. Lavone Gowen

    ReplyDelete
  13. I don't even have any words to respond back to all that you all have been through, but a virtual hug to Hazelnut, you, your husband and all your children and extended family. I know too well that Childhood Cancer is a disease that affects the entire family. I will continue to support childhood cancer research and as my daughter is a survivor of neuroblastoma, we all MUST keep awareness and funding going. Keep finding strength, faith, and hope.

    ReplyDelete
  14. lauren, you sweet thing..you have been amazingly strong and such an inspiration for so many moms..i hear them talk and admire you...you explain things so well..we continue to pray god's mercy on hazel and your family...it seems to me that i see so many believers all around me going through so many sorts of trials, more then ever...and it just means that jesus is coming back soon...

    ReplyDelete
  15. As a Pediatric nurse I have seen this situation first hand. I can't imagine what it must be like to watch your child go through this. I have thought about it a lot and the only thing that I know is that the Lord is watching over these little children. He comforts them and holds them and I believe somehow he helps them through the pain and discomfort. I am sure he loves all of these children and their families that are also suffering. I pray for you and hope that you continue to faith in him. Your strong example is so beautiful!!

    ReplyDelete
  16. hope lil gurl get better

    ReplyDelete
  17. God bless you, I know what your saying I seen all that with my granddaughter she had the same cancer, Sad to say we lost her two months ago after a ten month battle she was only three years old, My heart goes out to you and your family,.

    ReplyDelete
  18. Tudo ficará bem em breve e esses momentos de angústia fará de você, sua família e principalmente a pequena Hazel pessoas muito mais fortes. Rezo muito pela recuperação da Hazel, pois nenhuma criança merece sofrer. A sua pequena é um anjo de Deus.
    Fique bem pois Deus está com vocês.

    ReplyDelete
  19. My heart hurts for what your family is going for you. At the same time, what a testament you are to faith and to the miracles of our God! God bless you, and comfort you, and give you strength.

    ReplyDelete
  20. Vilera Mills
    May God Bless your entire family. I know he has lifetime plans for Hazel! I am sorry for all of these trials you are going through. I will be praying for comfort and healing for Hazel, compassion, peace, knowledge, and comfort for your entire family! God is so Good!

    ReplyDelete
  21. im praying every day for you little hazelnut, my heart is breaking when I read everything you are going thrue...
    but you are strong and will fight this/jasmina from sweden

    ReplyDelete
  22. Dont givw up hope we are glad to hear that she is doing alot better. You guys are a strong family and as long as you and youre family stay stong yall will over come this. Me and my wife cant imagine what ur going through but as know you have alot of support be hind you guys. Prayers go out to you and your family.

    ReplyDelete
  23. I'm praying for baby Hazelnut, your family and for God to meet all your needs. Wisdom for the Doctors and all of the medical staff caring for her.

    ReplyDelete
  24. Still praying for you, your little Hazelnut and your family. Thank you so much for sharing and opening my eyes. Today's prayer will be for comfort along with healing for your sweet baby girl.

    ReplyDelete
  25. You´ve been such a strong and wonderful mother. Not only you, but all your family and Hazel herself. I hope you'll be able to endure all this suffering and get to know better times very soon.

    ReplyDelete
  26. I'm so happy to hear that Hazel is doing better! Lauren you are such a strong person! Hazel is an amazing fighter and God is good!! No child should ever have to go through this! And my heart goes out to all families who lose their children to this dreaded disease. You are right when you say that there needs to be change in less toxic treatments. How can such a little body take all that poison? Thank God Hazel is headed in the right direction. I feel for your family and you will all get through this! It will be a thing of the past soon and you can get back to your daily, regular lives. God bless all of you including your husband and other children, who I'm sure want you both home!!!

    ReplyDelete
  27. Praying for you!!!

    ReplyDelete
  28. Thank you for sharing and updating us. Our heart is overflowing with love and compassion...and we Praise the LORD GOD almighty for Hearing the cries of so many to help your precious angel Hazel! Amen...and all victory and honor and praise belong to Him!

    Perhaps when your angel is better (she will be! praise the Lord...she will be!) you can put this into a book and it could help so many others going through what you are experiencing. You could even donate a small amount of the book sales to help others fight childhood cancer! See where the Lord leads you with this and follow His lead, it may be something the Lord led me to say...because it came out of nowhere!

    God bless you Hazel.
    God bless you Lauren, and God bless your entire family~

    With Blessings Love and Peace,

    Camille~

    ReplyDelete
  29. i'll keep praying for little hazelnut!! wishing for her comfort and smiling happy face again. i am in so much pain as i read your blog. no child should ever go through this!

    ReplyDelete
  30. I am praying for Hazel and the rest of your family. I am not sure how I came to your blog but the end surprised me the most. My maiden name is Hammersley. Small world

    ReplyDelete
  31. Heartbreaking! But God will bring full restoration to your family. He is faithful. Hang in there family! Hang in there little princess! You are being lifted up before God, by so many people!

    ReplyDelete
  32. Your daughter is God's messenger to teach his children strength and compassion. Hazel in my opinion is an angel on Earth.

    ReplyDelete
  33. whilst i find it utterly heartbreaking to read these posts detailing what your darling baby has had to endure and continues to endure…we thank you for sharing your story and making people realize the ramifications of child hood cancer and the treatments provided. we are thrilled to hear that hazelnut is off the ventilator and is continuing to stabilize. the description of her breathing tube was so hard to read - we cannot even begin to imagine what that must have been like to have to sit and watch - and as such so relieved to hear that its been removed. what an amazingly courageous and inspirational little fighter you have …..we are thinking of you all, praying for a continued recovery and sending love and big hugs xxxxx

    ReplyDelete
  34. I'm so happy that sweet Hazel is doing so much better! I am going to be thrilled for you when y'all get to go home, and I have a feeling it is going to be soon! Praise God!

    One of my dearest friend's son went through cancer treatment as well, and thankfully, made it through and is thriving today, and realizing all of his dreams. Although he was much older than your precious Hazel, he still fell in the pediatric age group. One thing that I feel I must let you know is that he remembers very, very little of all of the trauma he went through. His mother and father and all of us "extended family" remember every poke, prod, tests, blood transfusions-- I will never forget not one of them, but I am truly grateful that that memory falls on us and not him! It makes my admiration and love for him even stronger, and I know that you will feel the same feeling for Hazel when she is well!

    I have noticed that you have repeatedly called cancer treatment--the cure--toxic. I too feel very strongly that there is certainly an easier path and much less evasive treatment waiting to be discovered. While I am thankful that there is something in place until they find a better treatment, I sure wish that more was money was spent eradicating not only pediatric cancer, but all cancer so that patients won't have to suffer through the agony of "the cure."

    I look forward to your next update, because I know in my heart it is going to be a great one! I pray every time I think of y'all during the day. Sending sweet Hazel all of my strength today, and my love and prayers to you and the rest of your family. Much love! <3

    ReplyDelete