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. ❤️

Michael had a pain-free, incident-free night! He’s still dealing with the near-hourly sleep interruptions that comes with being in the hospital but his night was otherwise just fine. Obviously, sleep is as an important part of his recovery as everything else so I’ve been working with staff (rather…emphatically…to be honest) to minimize interruptions but some of it just goes with the territory. 

Michael’s vitals continue to be nice and strong, and the only thing a tiny bit off with his lab work is his sodium level. The doctors said at his morning visit that they are confident that’s merely a result of the water he’s been drinking combined with the IV liquid nutrition but “we’ll probably just give you a couple of salt tablets for that.” 

Also, Michael’s drain has finally slowed down its fluid production so things are still looking good for removal of that later today. Beyond that, his only instructions for today are to get some rest. 

The doctors said they’ll be back in a few hours to see how he’s doing and I’ll be back this evening to let everyone know how things are going. ❤️

Today was the most delightfully uneventful day we’ve had since we arrived. Since my last update, the doctor came in once to check on Michael, said he had no concerns and told him to stay the course with everything he’s been doing (so, snoozing, eating, and walking). There’s no news on the clot because dissolving it will take some time but there’s no evidence to indicate the medication isn’t already doing its job. 

Before I left tonight, Michael said a lot of the things that have been causing discomfort like turning certain ways or getting the hiccups “do not hurt anymore.” That is huge news for him and the first time he’s been able to say that. Overall, he feels like his innards have finally begun to cooperate and do what they need to do. 

The doctors have been saying for a couple of days that they’d like to take out the drain tomorrow and, as of now, that’s still on the table. He’ll get a big bag of liquid nutrition via IV overnight but he continues to drink Gatorade and Ensure with no issues so if that trend continues he will should be able to manage his own nutrition starting tomorrow. His vitals are wonderful so if his lab work looks good, he shouldn’t need an IV if any sort after tomorrow either. At that point there won’t be anything left for the hospital to monitor so… maybe we will be able to start talking about his discharge date again. 

They don’t want to keep Michael longer than necessary because every day he’s there he has to deal with sleep interruptions and the potential for random infections people can pick up during hospitalization. On the other hand, they want to make sure they resolve any outstanding issues so he doesn’t end up in a random St Pete hospital with a bunch of doctors who don’t understand the full scope of his recent medical history. We very much want to go home but we also don’t want to take any unnecessary risks so we and his medical te are taking it day by day. 

This day was really good. 

I’ll be back tomorrow morning with an update after the doctors stop in. Fingers crossed they start talking about booting him out for home. ❤️

Michael had a much better night last night than he has in a while. He’s up moving around this morning and has been walking every hour or so. In fact, we were tooling through the hallway a little bit ago and I stopped to talk to a nurse. When I turned around, Michael had sped around the corner and was gone. He left me in the dust!

The doctors just left and had all good things to say. For anyone worried about the clot, this may help ease your mind. Clots after surgery are definitely a concern for anyone but because so many of the veins around the tumor were already used to clots and other trouble before the surgery, this clot doesn’t have the same level of gravity that it might in someone else. They are watching and treating it, of course, but reinforced today that this isn’t a situation they — or Michael — can’t handle. 

His vitals are back to be nice and strong, and his bloodwork is looking good. The next couple of days will be all about monitoring labs and bloodwork, and trying to get rest. 

I’ll be back tonight with an evening update. ❤️

It took a lot of testing and assessments but they finally got to the bottom of what’s going on with Michael’s off-kilter lab work and ongoing (somewhat worsening) abdominal pain. It’s fixable with a medication and the doctors are not alarmed. I lead with that because saying he has a blood clot in one of the veins they worked on during surgery sounds very scary but it really is something they can address with a medication and they expect to be able to make it go away. 

The clot is causing some inflammation and pain in his intestines so they prefer Michael go back on a clear liquid diet for the moment, but food has been making him uncomfortable so he’s happy to make the adjustment. They said he’s free to get up and walk around, shower, and basically do whatever he wants while the medication does its thing. Although it could ultimately take weeks to resolve completely, the doctor said that as long as it’s working they’ll simply send him home with some pills when he gets discharged. 

They will also be inserting a specific type of IV tomorrow to give him regular nutrients and also make it easier to draw blood when they need it without sticking him 200 (more) times to closely monitor his bloodwork. This line is different from standard IVs in that he can be sent home with it if need be, so it’s not considered a setback but rather a different way to manage his care. 

I asked the doctor if any of this was cause for alarm and he said, “well, we aren’t excited the clot happened but it’s not a critical situation so he doesn’t need to go back to ICU or anything like that.” They have no reason to think it won’t respond to the medication but even if it doesn’t, they mentioned the next things they’d try and none of it requires a trip back to the OR. They have always been honest with us and we trust them implicitly, so we take a lot of comfort in that assessment. 

His next steps are to drink as many Ensures and electrolyte drinks as he wants, walk as much as he can, and catch up on the sleep he’s been missing. 

Michael has had a very difficult couple of days while they got to the bottom of this. Lots of tests, a million, trillion, bazillion needle sticks in finicky veins, constant sleep interruptions, an increase in pain, and the uncertainty associated with not knowing what’s been going on. He’s utterly and completely exhausted, both mentally and physically. Whatever source of comfort you call upon to send good vibes, please feel free to also send that energy Michael’s way. 

I’ll be back tomorrow with an update once the doctors come through on rounds. ❤️

Michael’s blood pressure is nice and strong, the rest of his vitals look great, and he’s much better hydrated now. Unfortunately, the problem was not a bladder infection so now they’re taking him for an abdominal CT since they’ve ruled out everything else from sepsis to a problem with the incision. We won’t have results until this afternoon so it’s going to be a long few hours.

It’s important to note that none of his doctors are alarmed and he doesn’t have a fever or anything else to indicate a raging infection has taken hold. It’s only because one of his lab values has been creeping up that they even thought to poke around. If they had urgent concerns they would start pre-emptive antibiotics while they investigated.

I’ll be back this evening to let you know what all we learned today. ❤️