BMT Day 9

I keep trying to post an update but her status changes so quickly. The night was ok. Delirium and confusion was pretty intense. Ashtyn would yell, “I need my mom!” I responded, “Ash, I’m right here.” Looking straight at me with almost disgust she said, “You are not my mom!!!” Pointing at Ethan I asked who he was. “That’s Ethan and you are not our mom!” She was up and down in bed constantly, wanting to leave, not knowing where she was or really even who she was. The best thing was to allow her to move however she wanted. When she wanted to get out of bed, she would sit at the edge of the bed, wrap her arms around my neck and I would stand her up with a nurse and/or nurses assistant to help steady her. Ash would push me wanting to walk away but I kept her close to the bed and let her feet move. “Oh look Ash, there’s your bed. Do you want to lay down?” She would get back in bed to then again sit up and want to get out of bed again. There wasn’t anything else we could do for her except support and try to orient her the best we could. By 2:00 a.m. she fell asleep for about 1 1/2 hours which was awesome. Since 5:30 a.m. she has been opposite of agitated and quite comatose. She will wake up from time to time and knows who I am. A CT scan was done to check for brain swelling. It came back normal which is a great thing. A lumbar puncture will be done soon to check for viruses. An MRI is scheduled and a central line might be started for continuous renal replacement therapy (dialysis). Her kidneys continue to show that they are injured and her blood cultures are still positive for bacteria. Her breathing is very labored so she may be getting a breathing tube. Her blood pressures are now low so a medication called norepinephrine may be started. This girl has so much going on. Bottom line, this is Ashtyn’s 3rd bone marrow transplant. Though these complications are severe, the BMT team is not entirely caught off guard by what they see. It was always anticipated that problems would arise due to how complex a transplant is and how her organs have already been through so much with having had two previous transplants. Her body always seems to take the most difficult path, stumping medical professionals along the way, giving them a run for their money, and then she always amazes everyone by pulling through unscathed. That’s our girl. She is in desperate need of prayers. Pray for 1. her Spirit that it will continue to have that strong fight within. 2. The healthcare team will be guided, helped, and blessed along the way. 3. Her body will recover allowing her to be the nurse, wife, and mom she wants to be.

BMT Day 9: VIDEO

This video are clips of today from about 8:00 a.m. to 8:00 p.m. Notice the improvement of her mental status and her respiratory efforts! Amazing!! I hope you can see the improvements. My post this afternoon mentioned she needed a lumbar puncture to check for viruses, an MRI to check for brain problems, a central line for continuous renal replacement therapy (dialysis), a breathing tube may be needed, and norepinephrine was at the bedside for her dropping blood pressure. Not one of those things ended up happening today. She immediately started getting better the instant I posted on social media what was going on and the need for prayers. What!!!??!! Seriously! Put yourself in the shoes of the intensive care unit, BMT, neurology, and kidney doctors when they were projecting the likelihood that Ashtyn’s health would continue to decline. Plans were in place preparing for the complications they foresaw. By the end of the day her health was in a much better place without needing those medical interventions! What a blessing! The less invasive interventions the better! What we need now is for her kidneys to continue to get better. She is so much more alert tonight than last night. Unbelievable yet totally believable! Prayers are being answered.

BMT Day 8

At 8:00 a.m. I was informed that blood cultures came back showing bacteria in Ashtyn’s blood stream. She has a life threatening blood infection. On top of that, medication levels have been high for a couple days indicating that her kidneys are not working properly. There are so many problems that come from injured kidneys but one is, medications build up and build up in her system instead of being excreted in urine causing a lot of confusion and irritability. I’ve never seen Ashtyn so confused and agitated. It seems like her body is tolerating the blood infection as she is being treated with antibiotics. Every 24 hours blood cultures will be checked hoping they will be negative for bacteria soon. Delirium has been such a struggle. It’s not certain what’s causing it but for now the best guess is multiple medication toxicity. By 1:00 p.m. it was decided she needed to be in the ICU mainly because of her mental status and kidney function. As of right now, not only does she have a nurse who is often doing medical interventions in the room but she also has a nurses aid 24/7 at the bedside because several times an hour Ash sits up and tries to climb out of bed to leave. Some may wonder why I don’t lose faith. A couple Facebook comments I received today explains why: “Maybe the ICU is going to be a tender mercy - somehow!” And “Praying that you look back on this and see it was just another step.”

ICU

Ashtyn was moved into the intensive care unit with bacterial blood sepsis, struggling kidneys, and significant confusion and delirium. Please trust God. Please trust Ashtyn’s strength. Please trust your own prayers in helping her gain health quickly. She is in the best medical hands, got a priesthood blessing, and now will continue benefiting from all your prayers. Please pray for her. Pray 1. for negative blood cultures. 2. that her kidneys will quickly recover not requiring dialysis. 3. her brain will recover quickly bringing back our alert Ashtyn. I believe.

BMT Day 7 VIDEO

The last several days nurses, doctors, and everyone else have been managing so much to keep Ashtyn safe. There are always new orders and approaches to balance her health. Most recently it has been low potassium levels, high anti rejection medication level, and fevers. Blood labs are frequently done and blood cultures are daily. There are also a ton of medication infusions throughout the day and night as well as almost daily red blood cell and/or platelet transfusions. No corners are ever cut when it comes to providing the best care possible. Nurses aids and I change her diaper regularly, give her bed baths, and clean her mouth. Occupational therapy and physical therapy come twice a day to do range of motion exercises. Ashtyn’s being cared for around the clock and is as dependent as a brand new baby. She spikes a fever at least once a day and only occasionally wakes up on her own. I’m grateful she’s not in pain, sleeps deeply, and is out-of-it enough to not feel the entirety of what her body is going through. I’m grateful for good vital signs, kidneys and liver that are tolerating all the medications, and lungs that haven’t been negativity affected by lack of movement. There is both strength and calmness felt in her room. Please pray for 1. no complications. 2. a fast engraftment where cells will start being produced allowing her to begin recovery. 3. her body will stay as strong as possible with all that it’s going through.

BMT Day 6

Ethan has been in Seattle for the past five days and isn’t allowed to sleep over at the hospital. At 1:30 a.m. last night I left the hospital to drive Ethan 0.4 miles to the Ronald McDonald House. After tickling his back and tucking him in bed, I got back to the hospital around 2:15 a.m. and noticed Ashtyn was shivering in bed. I took her temperature that showed 101.3. It was not just her temperature that concerned me, it was also her blood pressure that was a little lower than previous, she was more out-of-it, not getting up to the bedside commode, unable to drink pills or breathe in the incentive spirometer. Her respiratory rate was higher, she was restless and miserable, and could no longer verbalize thoughts. The nurse took blood for blood cultures, gave Tylenol to decrease her temperature, and gave a high dose of hydrocortisone which helps the body react to stresses. Ashtyn is already on a really good antibiotic called Ceftazidime for bacteria infections plus Valacyclovir for viral infections and Posaconazole for fungal infections. Because fevers aren’t necessarily uncommon in this setting and she’s already on a antibiotic, additional antibiotics are not started unless a bacteria grows in the blood culture. The problem was, to me Ashtyn behaved as if she was septic. I knew her side effects could be from the bone marrow transplant process, but I wanted sepsis treated immediately in case she had an infection. I explained my rationale and the doctor agreed to start another antibiotic Vancomycin for a day or two, in case she had a blood infection that ceftazidime doesn’t cover. Throughout the night, vital signs were taken every 15 minutes because Vancomycin was given over 2 hours and was a new added antibiotic. The nurse then gave a platelet transfusions. In the morning Lasix was given because Ashtyn’s body had retained over one liter of fluid. A red blood cell transfusion was also given in addition to all the other medications scheduled. She is described as being “medication heavy” which means she’s a very very busy patient. There’s also a balance we are trying to maintain between using pain and sedative medications to keep her comfortable but not too much to where she isn’t responsive. Ashtyn literally slept constantly today. Sedating medications are going to be given less frequently to see if she wakes up more. Her temperature was just taken and is back up to 101.5. She’s officially at rock bottom of the transplant. It will be a constant effort to support her through the next several weeks. I’m grateful her vital signs are good, lab values are able to be balanced, blood cultures are negative so far, there’s no serious complication, and she gets to sleep through one of most miserable experiences I’ve seen. Please continue to pray for zero complications while we wait another week before signs of recovery begin.

BMT Day 4 and Day 5

A glimpse into the life of a fighter.