Please pardon my rambling and probably repetitious writing in my posts. I've been writing whenever I can during these weeks, sometimes just jotting down notes. Some posts were nearly complete but with gaps between the days, I held them from publishing.
After re-reading some of them, especially from this week, I can see my mind was all over the place. I decided not to edit them though, just to complete what was missing for two reasons. One is time. I want to get these posted. The second is to make sure I don't alter what I was feeling at the moment that prompted me to write both what I did and how I wrote it.
Thank you for your understanding.
Friday, March 4th: Day +15
Chase and I were both woken this morning at 7:30 by an all too perky doctor, one of the parade of many, coming through his door. I think she was from Infectious Diseases. All I recall was her turning on the blasted brightest light in the room, which woke both Chase and I from sleep. Thankfully, her visit was brief and I thought we'd be able to go back to sleep.
No such luck.
Once that revolving door opens, the rest keep coming through. Within 5 minutes of her departure, one of the dermatology doctors came by. His upper lip is swollen worse than before, which is disappointing considering it had been going back down closer to normal. His bottom lip looks larger as well and definitely more red.
I can't tell you how heart breaking this is to see him fall another two steps back, especially after the news yesterday that his counts are probably coming in.
Adding to this is the change in his respiratory rate. He's breathing a lot quicker now, which is most likely due to the fever. Speaking of fever, it has been holding at 104.2 for about three days now. He gets the occasional reprieve with Tylenol but then it skyrockets again.
The dermatology docs yesterday prescribed some kind of steroid cream to go around his lips, hoping that would reduce the swelling. Along with returning to the saline wash and adding neosporin to his lower lip, these were the only changes from yesterday. Because his upper lips is swollen more and his breathing is not normal, they are canceling the use of both the steroid and neosporin.
Then we had an ENT doc come in. She's the head of all the others who saw Chase on Wednesday. The CAT scan didn't show anything in his sinuses, which I suppose is a relief. She gave Chase a thorough exam, even to the point of having him follow her fingers with his eyes. He had a little trouble looking to the far right. He said it was a little uncomfortable. When she asked him the names of his dogs, he looked straight at me and pointed. I don't know if he couldn't tell us or if his throat hurt too much to talk. He knew who I was though.
While ENT looked at him, the fourth doctor came by. She had on an AFLAC jacket, so I think she is one of the residents maybe. My head is spinning so much right now that I've forgotten which doc belongs to which department. Anyway, after she examined him, she let me know there is a chance he may have to go to ICU. They wanted to see how his lungs were doing first because they did not sound as they did yesterday. Rebecca said this isn't appearing like pneumonia. His lungs aren't filling, but it sounds more like they aren't able to fill as they should - diminished capacity.
I think they are going to start him on oxygen and before I could even write this much, they already and a portable Xray machine brought to his room to get a picture of his chest. I think everyone was surprised they got here so quickly. Actually, the oxygen idea was dropped. They fear it will dry out his nasal passages and throat even more, exacerbating the issues he's already facing.
Although ICU is being mentioned, they would send him so he could be highly monitored all of the time. it isn't like his nurses aren't doing that, but in ICU they have a lower nurse to patient ratio. I've already put in a request for Noah should be have to go.
Given his increased respiratory rate and high fever, I thought this could be the beginning of septic shock again, but his blood pressure looks good so far and his oxygen saturation is still in the high 90's. I'm glad it isn't what we're facing right now, but you still do not want to hear your child may go to ICU. I knew before we started transplant, expected it even, that he would make a trip over there, but it doesn't make it any easier.
The doctor who mentioned ICU to me said some of the symptoms he's going through could be signs of engraftment, which is when his donor's marrow is taking over and starting to produce. She said engraftment can sometimes make you sicker right before your counts start to come in. Then again, this all could be Chase fighting an unidentified infection. With all of the antibiotics and an anti-viral that he is on, it just doesn't make sense for it to be an infection. I'm hoping it's his new marrow to blame.
He took his Tylenol not too long ago, so that should give him some relief soon. It has never gotten him down below 38 this week, which is still over 100 degrees. I'm just so anxious for his fever to be under control. I know he will feel so much better once that happens.
Rebecca just came in and said they are going to give him a steroid throughout his IV. I asked her what the purpose of it was. She explained it helps combat the engraftment "syndrome", can help against GVHD (graft verses host disease), help the lungs, and in bringing down the fever. She also said it can lower his immune system, which leaves him even more vulnerable to infection. She described it as a very delicate balance between possibly opening him up to infection versus the benefits the steroid can provide. From what she said, timing when to give it is important to reap the improvements while also protecting the patients. In her opinion, she felt like it was the right thing to do.
An infectious disease doctor also just stopped by. His cultures for a virus were negative. She said she doesn't have any bright ideas, but will meet with the BMT docs to see if they can get to the bottom of the fevers. All of these docs and no one has any idea why his fevers are persistent. Lovely. I don't know how long it will take that steroid to start working - another question I need to ask, but I'm praying we will see improvement very soon.
Honestly, I'm starting to have that tight-chest, lump in my throat, "I need to cry" feeling come over me. Stupid tears are rolling down my face right now. I know sometimes it's good to get it out, but while we are in this environment, I don't want him to see me upset, and then get upset himself. It isn't just today making me feel this way. This has been slowly building, and I think in some part it's out of frustration for not having that red herring to point at and accuse of causing him to be so blasted sick. If they could come through that door and say, "Aha! We know what's doing it!", then I would at least have something more tangible to vent my anger on.
BMT docs came in. X-ray showed what they heard, diminished lung capacity and also showed collapsed air sacs. His upper lungs are not showing signs of pneumonia but they are what Dr.Haight called "juicy". Think a saturated sponge When the cells come in, they excrete fluids. The more we can get Chase active, the more those fluids can be expunged from his lungs. As for the steroids, they normally don't use the it unless the patient is in more critical condition, needing respiratory therapy and other medical interventions. But with his mouth as and throat as they are and with his transplant being high risk, they chose to be more aggressive and start the steroid now. Hopefully it will prevent him from needing assistance in breathing which would put him in even more discomfort. In ICU there would be a chance of intubation. If we can get his lungs working by dancing, singing, walking, screaming - each of those works a different parting the lungs and helps work the fluids out.
Well, he didn't sing or dance, but he did walk with assistance from Carissa and his walker. She's behind him pushing his pole. At first, he was breathing almost to the point of hyperventilating and he told me he couldn't do this. We stopped momentarily and he put his arms all the way around my neck, both for physical and emotional support. I just held him for a full minute and then we noticed how his breathing was far less labored. I was so proud of him for pushing through. He's such a trooper, but was discouraged about his performance today seeing that he managed to do 15 laps just a few days ago. He did 5 laps today, but had to stop half-way through each lap for about a one minute rest period to catch his breath. The point being, he did 5 laps! Any kind of exercise is better than nothing.
It's almost 12:30 in the morning, and Chase is still fever free!! I don't know if the steroids are the cause, but I am just so relieved it's down. Even if he experiences another fever, the longer he stays fever free, the stronger he can make himself in the meantime.
I feel much better now than I did this morning. It's amazing what a difference a few hours can make. Actually, it's amazing what a difference praying makes! Earlier today, I was feeling really down and picked up a book of daily devotionals and started reading through some of the pages I left a sticky note on. Although the book's purpose is to provide daily support through scripture for a woman going through a divorce, I have found much in this book and another that have helped carry me through this time. I have felt much calmer and at peace during this transplant as opposed to the last. It doesn't mean I don't have my days - like this morning, but I find them easier to overcome.Thank you again for all of the prayers and support.
- God Bless :)
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