On day +27, I believed once again there was hope to finally be on our way. And then day +28 came. And although the prayers for quieted cough finally seem to been answered, low grade fevers, headaches, leg pains, and inability to keep food down changed our hopes for getting out of here.

Although the fevers never produced a temp over 100, it delayed jen getting platelets until late in the day. Finally by 8pm, she was able to get them. She also struggled to get a migraine under control which led her doctors to believe one of the meds she was getting was causing it. Once that med was stopped the headaches let up.  

Day 27 & 28, she received neupogen shots, a bone marrow stimulant with hopes to raise her white count. Today it appears the shots have helped as her white count is over 3 again and cough quieted.  However the medicine is most likely the reason she had leg pain so today she didn’t get the shot. Hopefully her white count holds and continues to grow.  

But also Jen got sick several times yesterday and once this morning.  Since the nausea meds seemed to work before and now aren’t working as well, concerns she is developing acute graft vs host disease. Tomorrow they are going to scope the stomach and biopsy to see if that is the reason. And because of this, it no longer seems Jen will get out of here by the end of the week.

Jen has slept well today, so the news of staying even longer doesn’t seem to have her upset.  But I’m starting to wonder if after this, another hurdle will appear. It’s exhausting.  I’m thankful her cough has improved but I’m beyond stresses otherwise.

We turn the lights off at nine with hopes to fall asleep early. Within a couple minutes, the door to room 1429 opens. It’s Nate, the PCA. He was checking in to see if you need anything. We answer with request for fresh cups of water. A couple more minutes pass, he returns with water.

Now 9:13 pm, lights back off. She coughs. Quiet. 9:18, more cough. Ring for nurse, but the speaker on the remote works poorly on both ends so the room door opens. 9:19. “What you need?” calls out Nate across the room. “Something for my cough,” she says in her hoarse voice. “What?” he says. “She needs something for her cough,” I repeat. Door closes.

9:25 Stacy the nurse appears with cough syrup. She steps to the computer, stares at it for a short time,  takes her hand scanner,  scans Jen’s arm band and walks back to computer. 9:28 medicine given. 930 nurse leaves.

Things are quiet for an hour. 10:32 Jen needs to use restroom. It was a lasix day.  Restroom is a thing on lasix days. Unplug Ivy (we named the IV pole), readjust the O2 cord to stretch across the room. 10:36. Bring O2 cord back around bed Plug Ivy back in. Cover Jen back up. 

10:45 Jen has a headache. Common at night for some reason. Call the nurse.  Again can’t be understood so someone opens door and ask to be repeated. 10:50 nurse appears again with meds, stands at computer, scans bracelet, meds given. Before she leaves, Nate appears. Vitals time. 11:01. Pulse, O2 levels,  temp, and BP done and recorded in computer. “”You need anything? ” I’m out of water this time. 11:12 Nate returns with water. Door closes.

2:03 Respiratory appears with a breathing treatment.  Computer, scan bracelet, treatment. 2:12 door closes. Awake, must use bathroom. It was a lasix day. Since we are all up, I decide I need to go to. But I need to take off my isolation gown, mask, wash hands. Walk down to bathroom. Return to put on gown, mask, and wash hands again. Cover Jen back up, plug Ivy back in. 2:24.

Cough. Sigh. Nurse call. Rinse and repeat.  2:45 lights off, door closed.

3:16 Vitals with Nate . 

3:52 Labs to check CBC. 

4:10 lights off. 4:22 cough. 4:32 lights off.

7am vitals. 7:30 shift change, new nurse introduced.  8:10 new nurse enters. Meds, scan, cough…I don’t know. I’m too tired to know.

8 :25 respiratory,  9 :10 doctors, 9 :20 breakfast, 9 :45 Nurse Practioner. 

Sometime now between 10am and 11….there will be more coughing, PT, a nurse insisting she walk, more bathroom, and someone delivering towels for a shower. 

35 days. Without more than 3 hours of uninterrupted sleep. How is she to get well like this I wonder. 

To pass time here at the hospital, I usually have multiple colors of yarn and go from one crochet project to another.  Over the last month, I have completed one blanket, several premie baby hats, and promise to work on the blanket I had started for Jessica before Christmas. I also have the audible app on my phone and if I can’t fall asleep or need to do something quietly while Jen is resting, I plug in some headphones and listen to a book.

Awhile back I had also downloaded the app ‘goodreads” and looked through a list of recommended books.  I came across a book called “Truly Madly Guilty.”  Up until last evening the book had just been another fictional story, without much to take from. Last evening, I finally got to the chapter in which you learned what happened “The Day of The Barbeque.”  Essentially one of the couples small child nearly drowns in a fountain in the backyard.  And in this chapter, I was drawn to the words as the author describes the mother of the small child as she looks on at her little one laying there so helpless. The words, described so elegantly how I felt the day I learned Jennifer had leukemia. I shall with you now.

“So this is how it happens. A part of her thought as she rocked and begged. This is what it feels like. You don’t change. There is no special protection when you cross that invisible line from your ordinary life to that parallel world where tragedy happens. It happens just like t his. You’re still exactly the same. Everything around you still smells, and looks, and feels exactly the same. ”

Special protection. You think it’s there.  You think there is no  way a tragedy, like your child having leukemia, can happen without some shield. But there is no shield. You cross into this parallel world, without warning. There is no change in the rest of the world. Just your world. Everything else still goes on smelling and looking the same.

If you have been waiting for a positive post, you may find it in day +25.  I really believe Jen has turned the corner and is making progress to getting well.

 Everyday I look for signs of change. And I see it every day. Some days forward, some days backwards. Some days it is a big change and others small. I always see something that gives me insight to what I can expect. 

Today started with the words “I want breakfast.”  I haven’t heard that  in weeks. And then, Jen ate every bite. When she was done,  she told me later she wanted to walk. Again that is not something she has said in several days. And not only did she walk, she walked further than she had in a long time.  Then asked for something to eat again!  

She also coughed much less today and was awake more than yesterday. Seems like lately if she was awake, it was only to cough. Today when awake, she coughed little.  It is such a big relief. She also grew her platelet count without a transfusion.  Another big step. 

I also was blessed with a visitor from Ottoville.  My friend Linda Kaverman was in Columbus visiting her son and messaged me asking if I like to have dinner together. I was quick to say yes. How wonderful it was to see a familiar face!  I am so touched she had taken the time to see me. 

I hope in the days to come I can report Jen will be moving to outpatient.  I can tell you I feel closer today than previously. Your prayers have brought the start of healing and maybe soon Jen can be well again. 

We have now been in Columbus for 36 days, in the hospital for 31 days, and post transplant for 24 days. In that time we have seen winter end, baseball season begin, and Easter pass. Each day, we grow closer to leaving but also more anxious to do such.

This morning, Jennifer had a bronchoscopy, which is a proceure to view airways and diagnose lung disease. The doctor took some sample tissue to grow cultures to find what baceria is causing her the cough and pneumonia.  Jen had one of these also in December,  however this time because her blood pressure wasn’t low she was able to have twilight sedation.  If they couldn’t sedate her, I had asked them to wait until she had a bp that they could.  We haven’t heard any results from this procedure. 

During the procedure Jen lost some blood so they had to give her a transfusion.  She also required additional O2 (10 liters) but has since come down to 4 liters. She has slept most of the day. 

I did get Jen for the second day in a row to eat a bit more. She still isn’t eating much but more than she has previous. She is restricted on how much water she can have because her soduim levels fell again yesterday. However the drop wasn’t as severe as last week. 

Jen didn’t ask today about being released.  Not because she doesn’t want out of the hospital but because she knows she has to be here a bit longer than planned. 

Yesterday, the Doctor Walker ordered a chest ct.  She wasn’t satisfied that her chest xrays didn’t show signs of infection because with Jen’s cough, she had a strong suspicion Jen had something going on. The chest ct showed signs of pneumonia.  She was started again on IV antibotics and scheduled breathing treatments. 

This set back, although not what we hoped, seems to be well controlled at this point.  Low grade fevers were able to fix themselves without need for Tylenol.  Jen’s growing white count is most likely the reason her body has been able to fight. Yesterday her wc was 1.2 with ANC under 1000. Today she has pushed her wc over 3 and ANC over 2000. This is the numbers we have been waiting for. We expect they will continue to climb and her cough will go away soon.

Because they thought Jen may be sent home today, housing booked her hotel starting last evening (to give me a chance to stock the fridge and take over her things). So last evening I stayed at the hotel. I slept great too. And for the first time in a month, I made myself breakfast.  

There is nothing better than getting yourself more milk without having to ask someone to get it for you. Or being able to undress in your bedroom or brush you teeth without having to go to a public restroom.

Unfortunately Jennifer hasn’t been able to enjoy this freedom with me. Her O2 dropped last night in her sleep, her cough still holding on and her ANC had a drop to 590. They tell us that when you receive platelets, it can drive down white count and ANC scores. So at this point she is not been able to go to outpatient status.

It’s difficult to work through the waiting game but it is the only choice we have. It makes everything, even the smallest of things like making your own breakfast feel so big. Continued request for prayers as Jen is ready to move forward.  

You know Jen is starting to feel a bit better when she starts asking about getting out of the hospital.  And had she not still had this cough, I think the doctors would have said yes. But also Jen had one set of vitals this morning they didn’t like and she needed platelets.  So today is not the day, but maybe tomorrow. 

I did get some things taken to the hotel late this afternoon for when she is able to leave. I also went to the grocery and got enough to get us through a couple days. I was happy housing got things arranged as I am not sure how I handle that all on the day Jen is released as I may not to leave her for more than an hour at a time at this point.  

I did ask to have our space upgraded to a one bed suite as I am concerned Jen’s sensitivity to smells to not have a separate space to retreat to. But at $20 extra a day, I’m not sure beyond a couple weeks I can keep doing it. Hopefully by then Jen can handle the smells and we can go into a standard room. I am however excited to cook a meal with my stove top and little toaster oven Randy brought down for me. Oh and the trio crock pot Jess lent me. Real non-hospital food on the horizon. 

Jen did seem stronger today but her voice is still weak and is still sleeping a ton. I am so looking forward to her feeling stronger so I can take her to sit at a park or maybe spend an hour or two doing some art. It  will come eventually I know, but I’m looking foward to having my partner in crime back, even if it is just for short little spurts. 

I expect tomorrow or Wednesday will be the day unless something changes.  If it were up to Jen, she would be already laying in a regular bed snoozing.  

Jessica and Matt came down to Columbus today  (Randy got here yesterday) to celebrate Easter together. Jennifer spent about 30 minutes in the family area with everyone before getting tired and needing to go back to her room. She was a little nervous about today as she has so little energy to take part in much. The rest of the time we spent taking turns sitting with her in her room. 

We also did a little time today getting educated in how to flush her lines (we had this training before so it was a review ) and how to change her dressing on her central line. The process makes me still a little nervous but I have a couple days yet to completely understand.  

Unfortunately Randy, Matt, and Jessica had to leave by five to pick up the dogs and prepare for the work week ahead. Being apart is really the most difficult part of this time so we try to enjoy every moment we have together.

Jennifer is still dealing with the cough and is feeling pretty fatigued. She sleeps nearly 15-18 hours each day but is often interrupted by nurses, PCAs, doctors,  and staff. It will be nice to finally get out of here for some consistent sleep.

The doctors are telling us maybe Tuesday or Wednesday we can move to our new home away from home, Staybridge Hotel on Olentangy.  Although not ideal, it is better than living at the hospital.  I expect by tomorrow I will know if Tuesday will be the day or not.

I hope everyone had a good Easter. The first thing I’m cooking myself when we get out of here us some devil eggs. I miss those