Between the surprise news this morning and a lot of doctors in and out checking on him, Michael had a rough and tiring day. Although he’s eating well and his vitals and lab work are still good, he wasn’t up to walking around so he spent most of the day in bed.

As one of his doctors said this afternoon, today he’ll rest, tomorrow is another day, and we’ll move forward. I don’t know if the lead surgeon will be in tomorrow because of the holiday so I’m not sure if I’ll have much to report. But someone from the medical team will definitely be along at some point tomorrow morning and I’ll let you know how that goes soon after. ❤️

Michael had another great night and said it was “the best he’s had since surgery.” His labs continue to improve daily and his vitals are just terrific. 

He is still cleared for soft foods and eating with no issues. The doctors told us this morning that they want to continue to monitor his nutrition intake and fluid retention for the time being so there are no surprises when he returns home. To that end, they said we can expect to be here at least another week. 

As you can imagine, this was a bit of a surprise but we will make it work because we know it’s what’s best for Michael and is in no way a setback. It sounds like it has more to do with the fact that we live too far away to pop in for a doctor visit if anything seems amiss. 

I’m going to turn off comments on this post because so we have some time and space to process this unexpected development but I’ll be back this evening with an update on how the day went. ❤️

Today was an uneventful day, which is perfectly fine by us. Michael walked around, we watched an episode of a favorite tv show, and he slept a lot. He also ate three small hospital-provided meals today with no problems! His innards didn’t act up and his blood sugar stayed reasonable, so it was a successful test run. 

The diabetes management team stopped in after breakfast and said they would like to see how he does continuing to eat soft food again tomorrow, but this time without the extra IV nutrition they’ve been giving him.  That’s the best way to see where his insulin and other blood sugar-supporting medications might need tweaking before sending him home. They said his labs continue to trend toward their goals for him so Michael’s overall nutritional and insulin needs are definitely coming into clearer focus. There are also more signs that the fluid retention issue is resolving itself, so we’re really glad to see that as well. 

There’s really nothing else to report because it was such a quiet day (an absolute godsend that neither of us are complaining about lol), but here’s an anecdote from this evening that shows how far he’s come. I’m at the hospital for every shift change so I end up hearing report as Michael’s day nurse hands him off to the night staff. The first few days, his report lasted longer than a screening of Gone With the Wind because there was so much to say. This evening it was two sentences. He’s doing so well that there’s hardly anything they need to tell each other! 🎉

That said, I do want to make sure I give a clear picture of Michael’s overall recovery so no one is surprised the next time they see or talk to him. I spend the majority of these posts talking about the technicalities of his medical issues because I want to keep everyone in the loop on any physical symptoms or issues they’re treating since those are the things that determine when he gets to go home and I know that’s what we’re all waiting for. 

However, in doing so I don’t want to give the impression that he’s full of pep and energy because he definitely is not. His energy levels are appropriate for where he is in his recovery but he is not currently the Michael you’re used to. He gets winded walking to the bathroom. He needs help arranging pillows or coming to a sitting position. He falls asleep mid sentence. He’s pretty tightly wrapped in brain fog. These things are very, very normal after what he’s been through but I imagine anyone seeing him for the first time might be a little caught off guard by his sagging energy because I’ve been talking about how much he’s walking around, etc. But for every three-minute walk around the unit, Michael needs an hour or so of rest and sleep. 

He will be back up to full strength soon enough but it will take some time to get there. His mind wants to pick up life right where we left off before we came here, but his body is definitely not on board with that plan yet. We don’t know what his at-home recovery regimen will be but I expect the doctor will want him to focus hard on resting at least until we come back for his two-week follow up and I wouldn’t expect to see him ripping around Publix or going back to his multi-mile walks at the park for a while after that.  

We’ll see the lead surgeon again tomorrow morning and I’ll pop in here soon after to let you know how it went. ❤️

We had another really good visit from the lead surgeon and the big news of the day is that Michael can have soft food again! I practically ran to the cafeteria.😊 He’s already had some banana and a bit of scrambled egg so cross fingers, toes, eyes, whatever that the food behaves in his system. That was an hour ago and so far, so good. 

The doctor is still very satisfied with his progress and feels the fluid retention issue is continuing to slowly improve. His instructions for the day are to walk as much as Michael is up to walking and rest in between. The diabetic management team collected Michael’s endocrinologist’s contact information for me yesterday so they can talk with him about taking over his diabetes care after discharge and will also be back today with tailored dietary instructions and eventually his at-home medication information. 

Other than that, I don’t expect much else to go on today since Michael doesn’t have any particular immediate needs beyond monitoring and medication administration. He won’t need any post-surgical physical therapy because he gets around just fine and they don’t have any more tests or procedures lined up for him beyond the standard bloodwork he’s been getting every day. 

It’s been one hell of a ride but we’re miles and miles ahead from where we were a couple weeks ago when just sitting up to sip water was a Herculean effort. Michael is coming up on the two-year anniversary of his diagnosis this month and he has clawed and fought every step of the way to get here. I’m so proud of him and amazed at his perseverance every step of the way.

I’ll be back this evening to let you know how his day went. ❤️

Michael is still holding his own, trying to balance walking often with resting as much as possible. I don’t have a lot to report because, although it was a busy day of various teams coming in and out, it was mostly fact-finding missions so everyone can start organizing his at-home strategy for when he’s ready to leave. 

By the time I get back to the hospital in the morning, he should be off all IVs (again) except for the bag of nutrients and calories that are picking up the slack until he is able to eat more than Ensure. We had a couple of different conversations with doctors who specialize in blood sugar management today and they’d like to reintroduce puréed/soft foods again so if the main surgeon approves, that may happen in the very near future. 

Michael’s vitals are still great and the doctors say the labs they’ve been watching are still trending the way they want them to. They’re still helping him shed the fluid he’s retaining but that’s just something that has to run its course over time. There are stronger medications they could use to speed up the process but that could upset the delicate balance of his lab work. Since the fluid retention isn’t anywhere near a dangerous level for him, they’d like to leave it to sort itself out as much as possible. 

I’ll be back tomorrow before visiting hours start so I can catch the lead surgeon again when he comes through on rounds. I’ll keep you posted shortly after. ❤️

We had a great visit with the lead surgeon this morning and he’s happy with the way Michael has been progressing. He made some medication adjustments and told Michael to be sure to get up and walk around as much as possible to get the fluids out of his system. He confirmed that the tumor was Grade One, which is always good to hear. He also said he feels comfortable with his decision to skip the fluid removal procedure as discussed over the weekend because he believes a combination of walking and medication will get the job done Everything points to it working already so that’s good news. 

It was a short visit so the doctor could catch up after his time away but he’ll be back this afternoon for a check-in and to talk a little more about where we’re at with his discharge timeline. The doctor is clearly anxious to get Michael out the door and away from the germs and activity of a hospital unit but we know he won’t let him go before it’s prudent. 

Last night Michael said he’s bored, which was music to my ears because it means he’s beginning to feel strong enough to want to be active again. He has plenty of things to keep him occupied while he’s stuck sitting around and he won’t push himself more than he should because he’s listening to his body. But I’m glad his mind is ready to start running around the block. 

I’ll be back this evening to let you know how the day went. We’re crossing our fingers and toes that this is the week they kick him out before he becomes a permanent fixture and we end up as Miami residents. 🙂 ❤️

Well! When the doctor said this morning that we were in the home stretch, he wasn’t kidding. There’s no release date yet but the docs got together for a conversation today now that his main doctor is back in town and they decided he doesn’t need the procedure tomorrow to remove fluid after all. They believe they can get the job done with a medication instead so they started it this afternoon. Even though the procedure was minor enough that they can do it right in his room, everything comes with a risk so we’re glad this option was available instead. 

And there’s more good news. They finally took out the drain! Even though they could have sent Michael home with it still in place, not needing it at all is another sign that he’s recovering well. 

And there’s even more good news. A doctor who specializes in diabetes management came in for a chat so he could begin working on a plan for how Michael will manage his diabetes at home. It was a preliminary visit to get a total picture of what his life with diabetes was like before surgery, then the internist will meet with his team for input and come back tomorrow with suggestions and recommendations for when he goes home. They will also have a dietician stop by again with nutrition information that’s better tailored to him than the last visit when they didn’t yet have a clear picture of how his diabetes would show itself now that Michael’s entire pancreas is gone. 

How about some more good news? The best news so far, in fact. The final pathology report came back and the tumor has been confirmed as a Grade One all the way through it which, if you have to have a tumor, that’s just about the best grade to have. They removed dozens of lymph nodes as well, 26 I believe, and only one came back with a few cancer cells in it. The rest of the nodes were fine. The attending who shared the good news with us and was in the OR for the procedure said he expected a whole lot more infected nodes so that’s terrific in and of itself, but then also reiterated that a few lingering cells in a single node is not anything unexpected or concerning. Whether Michael will have follow up chemo or radiation is something his main surgeon will decide and let us know tomorrow. He wasn’t being evasive, he said that the main surgeon believes he got it all but wants to confirm that with pathology before we meet tomorrow because he likes to be thorough. 

Neither of us were expecting all the commotion today, but it’s been a day of happy surprises. To say Michael is glad that things are progressing faster would be an understatement because he’s really ready to be home. 

Tomorrow sounds like it will be a busy day for him but if this journey in Miami has taught us anything it’s to never assume or predict what’s around the next corner, so I won’t. I will say that we both feel very good about everything that unfolded today and are looking forward to what tomorrow holds. 

We know the lead surgeon will stop in tomorrow morning but that may happen before visiting hours so I’ve asked for permission to come to the unit early so I don’t miss him. I plan to post another update mid-morning but that’s dependent on who all wants to meet with us so if you don’t hear from me until later than usual, it doesn’t mean anything negative has come up. ❤️

Michael had another good night of sleep and no changes to his vitals, etc overnight. He’s still getting bags of liquid nutrition alongside the Ensures he’s drinking a few times a day and his sodium levels have finally come up to “low” instead of “we need your sodium higher right now,” so that’s a very good improvement. They’re also circling in on the right balance of insulin injections to work with his new body chemistry, so his blood sugar ranges have been coming into better alignment as well. 

Michael will spend today resting and that’s about it. Tomorrow he’ll have the in-room procedure to take out the extra abdominal fluid and give them a look at what that’s all about, but they’re still thinking it’s just some old leftover blood from surgery that’s looking for a way out. 

The doctor said we’re in the final stretch. He reiterated that Michael has been “a tricky case and restoring your equilibrium has been a challenge. But you have been passing the ‘eyeball test,’ which means you look good! We only know about what’s happening under the surface because we’ve been measuring things and we’ve been able to address them quickly.” That’s really good to hear. 

Since all that’s going on with him today will be to check his vitals and give him a few meds throughout the day, this evening’s update should be short and sweet. I’ll keep you posted. ❤️

Michael spent the day resting and walking, walking and resting. His vitals are staying strong and his labs look generally fine. His sodium levels are still low so they’re still trying to work out where the balance is between enough fluid intake to keep him hydrated and too much that it increases his sodium needs. Other than that, his lab work isn’t giving them any concerns. 

We did learn a little more about the ultrasound results this afternoon and how they plan to manage the fluid that’s collecting in his abdomen. They think there may be some blood accumulation leftover from surgery so they’re planning to remove some of it via the same general process expectant mothers have for genetic testing on unborn babies. In case anyone is squeamish, I’ll leave off further description but if you want to know more you can google “paracentesis.” It won’t be any more uncomfortable for him than when they’ve inserted special IVs in the last couple of weeks, and it’s a common procedure they’ll do right in his room. 

They will test whatever fluid they collect to learn more about its origins and whether it contains anything that may cause an infection, and then monitor Michael to see if it accumulates again. It sounds like a a big deal but, as the doctor noted, the fluid is not making him sick so there’s no reason to worry. Monday is approximately 700 years away in hospital time so if they thought the fluid was any cause for alarm they’d do the procedure long before Monday. 

By now you’ve probably figured out this means we’re here well into next week. We both wish that we’re not the case but neither of us want him to go home before he’s ready, so we will make the best of it.

In the meantime, the private room is a godsend, he’s getting lots of sleep, and everything is gradually coming together for his recovery. If nothing else, he’s going to eventually run out of body parts that need checking, testing, or tending to. 😊

I know it seems that we get close to release and then something else comes up but that’s the nature of this particular beast. The tumor wreaked havoc on Michael for two years that we know of and (according the doctor) “many” years before that. It stands to reason it will take a while to clean up the mess Phil left behind but we’ll get there. 

I’ll be back tomorrow morning after the doctors sail through and let you know what they had to say. ❤️

Well, everything is okay but we got a lot more than we bargained for today. Michael’s labs still look good, his vitals are strong, and as mentioned yesterday, he’s getting his main nutrition through the special IV line so we know his caloric needs are being met too. Even his drain is behaving. 

However he’s really run down and tired, much more so than when he first left ICU. He has no pain or tenderness in his abdomen but he had an ultrasound of the area this evening to make sure there is nothing gearing up in there to be a problem that hasn’t surfaced yet. The tech said there was nothing particularly notable except “liquid” in his stomach. He’s been drinking Gatorade so I see no reason to panic about that unless the doctor tells us to. He has also developed a tiny fever just before I left, just 99 degrees, but they take everything very seriously so they will keep an eye on that too. 

The only reoccurring issue that hadn’t been solved since Michael arrived on this unit after leaving ICU is the excessive sleep interruptions, so he has been moved to a private room so he can finally get quality rest. The doctors had been asking the staff this week to reduce the number of interruptions and I’m sure they tried, but everything is doubled when you have a roommate so it was an uphill battle. I’ve also been talking with the staff over the last few days about how to help him get more sleep as this has also been a major concern of mine. It took a bit of doing but I’m happy to say they responded well to patient advocacy and he moved into his new digs this afternoon. His room is quiet as a church and the number of sleep interruptions the rest of the afternoon/evening were noticeably lower already. 

Michael needs to build up his strength once again and get back to where he was a few days ago so talk of discharge has been shelved for now. They now say it will be “a while” but weren’t more specific and I understand why they really can’t be. 

So, we’re here until further notice but that doesn’t mean anything terrible is going on. The orders he’s been given by the doctors every day have been to walk, stay hydrated, and rest. He’s been complying with the first two but the resting has been out of reach, so keeping him here is mainly to give him a chance to do that now while still keeping an eye on how his overall recovery is going. 

I don’t know what kind of rounds the doctors will be making on Saturday so I’m not entirely sure whether my morning update will include information from their visit, but if I think their arrival is imminent I will hold off on it until after they stop in. ❤️