Day 72 of 100. Of course Julie has been hospitalized for 90 days now so the time lapsed in our eyes is greater but you get the point.
Gotta say though today was a good visit overall. Julie is obviously bummed and a little down that she is in a hospital room again and that is how we had to visit. But, in my medical opinion from only physically seeing Julie once a week she is definitely progressing. It is difficult to stay positive because for every three steps she takes forward something causes her to slide two back, but even at a snails pace there still appears to be light at the end of the tunnel. She is supposed to be going back to the bungalow tomorrow according to her doctors and hopefully be downsizing on her daily clinical as well. All good things in the progression of heading home healthy. As well as today she looked healthier, stronger, and more energetic. Now keep in mind the scale I use she is still barely walking, mostly sits or lies, and doesn’t eat much. But, from last week seeing her in so much agony with her shoulder, foot, and swollen belly, things are looking up. The ulcers in her poopie hole have decreased in size, her shoulder seems to be improving, she had more spirit in her eyes, and was able to stay in conversation with us the entire visit. Big milestones in our little world.
So day 72 of 100. Who knows how quickly she will bounce back. The past is gone, the future has not arrived, all we have is today. Today was good.
No bad news so far. Things seem to be looking overall good and hopefully this hospital stay will prove to be beneficial in jump starting Julie back again to eating and regaining strength. There are no results yet from the GI intrusion, PET scan, and other tests. However the MRI on her shoulder showed no cancer or any other issues, and according to Julie is does seem to be generally better than it has been. So all in all not too bad. I think we are looking at her being back to the bungalow by Monday at the latest if things continue to hold steady and she continues to feel okay. As always it’s just a waiting game.
Things obviously did not get any better today because Julie has been readmitted to the hospital for testing so they can try to figure out what is wrong. Basically she is too skinny, too weak, her foot is still swollen and shoulder still in great pain. They want to get her back on a food bag, constant hydration, and monitoring. This now is leaving her too tired, too weak, and too depressed.
Hopefully they will find some reasons and help nurse Julie back to a more stable and healthy state. Quickly.
That’s what today felt like, a giant poop sandwich. If I ever wrote a book about our time during all of this I would title it “Poop Sandwich” with (my wife is sick make her better already) underneath.
Not that today was the worst day ever or that any day during this has been “that” bad. It is just that we are so far in and have had so much good happen but also so much bad, it is very exhausting and annoying. For example: Today we were happily heading out to see mom when we got the text that she had been up all night in pain with her shoulder, foot, UTI, and some other issues, so she was now in the clinic getting her infusions of liquids, steroids, platelets and blood. We were instructed to take our time so we would not have to wait to long in the bungalow until she finished. So we did. We grabbed some lunch and got to the bungalow around noon. Julie said the blood would probably keep her tied up until around 2 so I left the kids with the grandparents and headed over to hang with Julie and bring her back when done. Well it turned out that her potassium was low today so they gave her some of that. Apparently too much. When it was time to go the nurse informed us that Julies potassium level was too high so they needed to give her some calcium, insulin, and something else. So that screw up drew our stay out till 6pm. We finally got back to the bungalow and Julie was so worn out she just laid on the bed for the final two hours we had left to hang out. Not the worst day ever but pretty lame.
So we left around 830 leaving mom on the bed looking like someone on a commercial we should send $6 to feed for a month with her crazy skinny arms and legs, bloated belly, swollen left foot, and heat pack constantly on her shoulder (maybe not that bad but not good either). We left to come home and check off another day on the calender, another week gone by without mom home, and another Sunday visit leaving a full week until the next.
Poop Sandwich folks. Poop Sandwich.
Well once again Julies condition has the doctors, by their own words, stumped. As I said previously she has taken donor 100% and she has since then almost got rid of the virus that was attacking her, but now she is having new issues. She is still getting blood and platelets regularly, they have started steroids through IV to hopefully have more impact on the GvsH in her GI tract but she has begun having issues with her shoulder now. Lots of bone pain and limited motion. She also seems to have it in the ball of her foot too. They did an X-ray of her shoulder today and it did not show a break or anything but that almost makes it worse since they cannot figure out if it is from disease, steroids, meds, or X factor. It doesn’t help either that she is so weak due to this whole process. She has a hard enough time just standing or getting up a step, a shoulder injury just compounds this whole rebirth, stability of a baby giraffe situation.
So that’s whats going on. Constant issues that seem to keep her from a “speedy” recovery and return trip home. Blah.
Test is back. Julie is 100% donor. Meaning that she has accepted the transplant completely and is now 100% her donors blood type and immune system. She still does have some GvsH in her GI tract but they are working on some meds for that and hopefully rid any of that nonsense shortly. This is great news, forward progress, moving towards healing.
In other news we spent the whole day with Julie yesterday and had a great time wrecking her bungalow and annoying her neighbors. It was a much needed visit for her and us. She is still super weak but I imagine that after our visit and some good news we can hope for some more progress and rejuvenation. Homecoming soon.
Been a lot of good days and bad days, good mornings and bad nights in the bungalow. Yesterday and today have been pretty rough. Julie has been up and sick for about two days now, vomiting through the night, diarrhea, the works. They put her back on a clear liquid diet while they tested to see why so much blood is coming out and also dove into her GI tract again to see if there are any answers there. So not a good past 48hrs. Julie has been mostly inpatient today getting tests, blood, etc., so her spirits are low, but she gets to go home tonight and the girls and I come to visit on Sunday to hopefully help recharge her batteries a bit.
Unfortunately I do not have much more news. Still on the two a days until the 10th and currently struggling to get by. Praying for some relief soon.
Got to go visit the old lady today. It’s an ironic name because I use “old lady” as a term of endearment even though she hates it and surprisingly today she truly appeared to be one. When I arrived this morning I met her at the infusion room where she had been since 8am and had to remain until 230pm. (As a correction to my last post she does not receive blood everyday, although she did get platelets today, rather she is infused with antibiotics, potassium, sodium etc. every day at 8am and 8pm until September 10th). So when I arrived she was going through the motions of said procedures. When she was done I was able to escort her back to her bungalow village via wheelchair. Now for the purpose of visualization she is no longer bloated, her face looks normal, but the rest of her body has withered away to nothing (like when Bella was pregnant with Renesme). She is super skinny. Now don’t worry she is still eating, it is just part of the process. So anyways she is really frail. So when she finishes infusing I take this frail women in a wheel chair with her big rimmed black sun hat, over sized black Gucci sunglasses, and little construction worker igloo lunchbox on her lap back to the village. It was like pushing Miss Daisy or an 82yr old Jackie O. Not to make fun of the situation but kind of fitting that I like to refer to her as my old lady and today she represented what to the passer by could be an actual old lady. Ah the satisfaction.
Kidding aside she was and is doing well. She seems much better and aside from the frailty looks much better as well. The bungalow set up is pretty cool and now that she has made it through the week there it looks like a move back home is in the near future.
I have to say twas a great visit.
It has been brought to my attention that my recent posts have been a tad short and curt. I have to say that I agree with that statement as well.
In the world of bungalow life Julie seems to be getting along fairly well. Her daily routine requires her to check in to get blood from 8am-noon everyday, then she goes back at 8pm for something else medical like that. Today she actually didn’t need red since her counts increased on their own, just platelets then back home. So we are heading into the weekend with things looking very positive.
As per the norm I don’t know much else but I know you care so I try to share. Sharing is caring. Caring is sharing. (Insert motivational quote here).
Got a call from Julie around 7am saying that they decided to try the bungalow again. Great news!!