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
- 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!!!