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

Oh how 24 hours makes a difference.  Although Jennifer is still uncertain there are improvements, me, the docs, and nurses can see them.  

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As we approach Easter weekend, we know we will be spending the Holy Day here in the hospital.  We had hoped for a possibility of being out by Sunday but knew it would need a perfect recovery.  It has not been as we hoped. 

There is good news and I think best to start with that. I don’t want to under emphasize how important it is. When you have a bone marrow transplant,  the key to it working is having the marrow engraft. You know this is happening when the counts start to rebuild itself. Jen’s white count has grown from .1 at the beginning of the week, to .81 today. But even more important, the ANC or neutrafills (part of the white cells) has grown over 500. In order for Jen to be released and to fight off infections, this is important.  So engraftment is beginning to take place.

Also Jen’s soduim that had dipped dangerously low are almost back to normal. However this dip has caused Jen some delirleum.  Of all the things we have to deal with this hospital stay, for me this has been the hardest.  Over the last several days, there has been some improvement but Jen continues to hallucinate, especially when at the edge of falling asleep and is iratible. Today she does seem more cognitive, which gives me hope her brain will restore itself in time.

Also Jen’s cough has been a problem for much too long. Today they think her lungs sound crackly so chest xray has been ordered. If there is fluid there, they will start lasix to pull that fluid off and hopefully get her lungs 100%. We are still waiting on that chest xray result. 

Jen also will get a transfusion of red platelets  (hemoglobin ) today. With her being short of breath,  I’m hoping this helps that improve also. 

We also are trying to get the nausea under control and Jen eating again. She hasn’t eaten much in a good two weeks and she needs the protein in her.  

Doctor is hopeful to have her strong enough to move to outpatient by mid next week. She has some work to get there bUT with her engraftment starting to occur, we are hopeful.  

Jennifer had a new central line put in this morning. We are happy that is finally taken care of. 

Although Jen’s soduim levels continue to improve,  the delirleum remains. Head ct shows brain is ok…so we just have to wait for the delirleum to fix itself. She knows who she is. Where she is, her birthday, and all that. She just can’t tell what is reality and what isn’t. She also is very irritable.  It is nearly as difficult these days as it was in December when she had pneumonia but for different reasons. 

Her vitals are good and wc is growing slowly with her ANC scores now high enough to be released from hospital however the delirleum will prevent that from happening. We hope she remembers little of this.

I was hoping to post this morning how big of a jump Jennifer ‘s counts made but that is not the case . They haven’t budged.  Also her sodium levels had increased from 120 to 125 but haven’t increased from there. Normal is 135-145. She still has some confusion and is cranky from limited amounts of fluids she is permitted. 

They also will be doing a chest xray as she sounds crackly on the one side. And her coughing continues.

I spent the evening in a nearby hotel where I slept for over 12 hours. I’m so thankful Randy has come down to join me so that was possible. 

Hopefully later today I have better news. Keep the prayers coming. 

I find when Jen gets most fatigued, I worry. Today, Jen’s cough is persistent.  And because of this, she is miserable.  Her eyes look tired, with dark circles and,  sunken.  And all I can do is sit here wishing I could make it go away.

I woke up with a plan. I was going to run to Target, get a few things, and come back with renewed energy and get Jen outside on the patio on the 14th floor to enjoy some of this beautiful sunshine . I thought something other than this nasty dry hospital air may help her cough. And if we repeated it a couple days in a row, the cough would finally subside. 

But a couple things stopped that plan. First, I opened my eyes this morning at shift change to see, Tina, the one nuse I really don’t like caring for Jen. Nurse Tina is a busy body, jolting about the room like a nervous mouse. Half the time, she has to retrace her steps because she forgot what it was she was doing. But this is only half my problem with Nurse Tina. Not only does she seem a bit ADHD, she also comes in the room, maybe even in the hospital each day with her own agenda. She knows what needs done, makes a list of those things and refuses to stray away from that list no matter what.

Well this doesn’t work when you haven’t even talked to your patient yet. She is so dead set on doing things as she has planned, she pays very ltitle attention to Jen’s needs. Even something as simple as getting a glass of water, can throw Nurse Tina off,  so she chooses to ignore the request.

So Nurse Tina was the first obstacle in having a great day. But I decided to move forward and off to target I went. I then get a text from Jen  that her coughing had caused her to vomit.  I didn’t get much more than that from her until I came back.

Nurse Tina had been insisting Jen take her pills. Yesterday,  we found taking pills during a coughing fit, will result in the pills coming back up. And that is exactly what happened. Every last one ended up not making it to her stomach. 

So you would  think some level of inspection would be done to find Jen needed her meds again. But the vomit episode had already thrown off Nurse Tina’s day, she surely doesn’t have time to reorder her meds. 

Well in those meds were things that helped quiet Jen’s cough. Given 12 hours apart, Nurse Tina insist she may have gotten some in her (although Jen sees the entire pill intact in her vomit). This leads to an entire day of coughing,  exhaustion, and no trip outdoors. 

I will be requesting Nurse Tina to not return.