Category: My Journey Blog

Well, today was a good day. Blood sugars are starting to trend down. I got an email from my nurse that I need to increase my Lantus (long-acting insulin)to 10 units. I think we are almost there. Yesterday Joe left and I sure miss him. He did a great job taking care of me. Now, my friend, Kathy is here. We had great weather today so we went to the Minneapolis Sculpture Garden. I did great but it tired me out. I had a surprise visit from my Florida home health nurse Nancy. Yesterday she knocked on the door and the look on my face was priceless. We visited for a while and before leaving she prayed for me.

Todays Pic

Changing of the guard.  It is 6:18 am CDT I am headed to Florida. Kathy is here to look after Sue. Sue is doing great. I am so proud of her. I look forward to the day in two to three weeks when I can come back and bring her home. She still can’t lift anything more than 10 pounds. Its only 18 days since the surgery but I know she is feely great with no pain and on no medications. It is not easy to leave her, but I must go back to work. I have been working from here but that is not easy. I think the hard part now for her is to not go crazy and do anything she would do in say three months. and she still needs someone here in case something goes wrong. Chances are slim but with the platelet counts high still possible.

So I fly home in an hour or so. Hard as that is. But with prayers for her, the time will go by quick as these past 19 days since the journey began for me. It is hard to believe but I am very happy and thankful to God and to the many to have supported her and prayed for her. Please keep praying she still has a long way to go, and it’s work, YEAH!

The next entries will be every couple of days. keep checking back. We will post things of interest, progress or concern.

Thank you all.

Pic for the day

Joe Leaving Minnesota for Florida 9-16-18

Today is a quiet day and the beginning of a transition Sue is feeling better each day and as a result getting more energetic each day, but she needs to slow down after all it is only 14 days since the “BIG” surgery as she said before the surgery. And, it is a direction by the Doctor, even though Sue is feeling good and like she can do anything, she can’t she can still do things that will hurt herself.

There was more adjusting of the insulin today and we got back results of the blood work, unfortunately, the platelets went up more. The Doctor is not too worried right now but if they don’t start trending down soon he will take a different course of action.

As I said today is the beginning of a transition. My replacement, Kathy flew in today to take over care for Sue. On Sunday I will be flying back to Florida.  Sue will be in good hands Kathy is the best we could ever have come help, she has the experience of taking care of family in similar conditions with diabetes. And with the transition, the blogs will change a little. Sue will be posting them herself starting Sunday. I am going to say they will continue daily or every other day until she goes back to Florida especially while they deal with the insulin and platelets.

So Sue keeps getting better and in a few weeks, she will be home in Florida. Keep praying that the last two items resolve quick and she can continue to work on healing and moving towards her new life.

No pics today.

Well , I have seen everything! What do you get when you have a surgeon who is a former Army doctor and a clinic that is evacuated because of a gas leak? An appointment outdoors! And what a beautiful day for it. Never would I have expected a doctor to be so down to earth as Doctor Beilman. Calm cool and collected.  I can see why he is such a great surgeon just by the way he handles situations like this. Other doctors were canceling appointments but he took advantage of the great outdoors. Now in my book that tells me two things first, he realizes we came all the way for the University for the appointment and it was important (the patient comes first), and two, the respect not to blow off the patient because of a gas leak when we were just 100 feet apart (He cares about us). WOW just mind-blowing! So, we met outside by the parking lot and we all sat down and started talking. He and Sue just had the follow-up appointment, minus the physical part, but that can be done at the next appointment before she comes back to Florida. They talked about everything they needed to and it was unbelievable. Nobody knew what was happening and no HIPAA rules were broken, now how about that! Actually, they had cleared the building and everyone was allowed back in and Dr. Beilman asked us if we wanted to go back inside but it was so nice outside and things were going so well we all agreed why and remained outside. So there was a bunch of great news for Sue. She can drive since she is not on any pain medications and has 0 pain. And Dr. Beilman could only smile with happiness for Sue. They discussed her return to Florida. While she can return just about any time because there is no surgical pain staying at least until the end of the month to make sure the blood sugars are well under control and get a final visit in, would be his recommendation and agreed upon definitely by all. As Dr. Beilman put it, Sue is doing really well and could easily go home, but staying here ensuring everything is right will cap off a remarkable recovery. And he definitely wants to use her as an advocate in the future because of her success and the effort she put into this, she will be a great example for many of his patients.

Ok, Here are the pics from the day!

Everyone is evacuated from the University of Minnesota Health Clinic Building “What do we do now?”

“Let’s meet here.” Sue was so happy and excited she was about to cry with joy. Dr. Beilman was really happy that she was happy.

The Out Door Office!

Going over Sue’s health. This really shows how much dedication and care Dr. Beilman has.

Time to sign the shirt, Louise First

Emily is next.

Now the man of the hour, Dr. Beilman!

Here is

Team Beilman!

Emily, Sue, Dr. Beilman, Louise

How to make the Doctor proud, and that is hard to do to this humble man.

One signature missing, God’s…

Today was a quiet day. The blood sugar levels were up a little which has us perplexed. Sue upped her Lantus (the long-acting insulin) and we expected her levels to drop. She is in touch with the doctor’s office daily and to make sure she is not figuring anything wrong they are having her send in her meal records to verify she is calculating things correct. So far things are looking good it seems just the balance that they have been telling us about.

PT came today. That was a good but short visit. Good in that she verified that Sue was doing as good as we knew and short in that she released her from further need of PT. Remember that bet I wanted to make yesterday, NO takers, hmmm.

A quiet evening is planned for the rest of the day.

Tomorrow. more rest and then a Doctor’s appointment with Dr. Beilman. Blood work just before to see how the platelets are doing, but we hope that she gets the official word to drive and when she can plan for her return to Florida. That may be stymied by the platelets, the blood sugars or the hurricanes but in any case, she will have the best care while she is here and that is the most important.

Looking back to a post I wrote on 8-20-18, I spoke about the day she would have a pain level of 0. That was 11 days before the surgery. 12 days after, she has 0 pain! Sue and I sit here in utter awe. We need to thank many people. The Doctors and medical team, the many people who supported her, PRAYED for her. and most of all GOD, who Blessed her!

No pics today

A prayer to remember those who were victims and heroes in 2001.

Sue continues to get better and impress a lot of people. The nurse came today and checked her out. Everything was excellent. I am not exaggerating. She determined that she only needed to come by once a week. She helped Sue set up her meds so that she has a better handle on getting them at the right time and the right medicines at the right time of the day. Sue doe have a few meds to take for a while and making sure you get them down right to start will make things go a lot easier in the long run. Some meds make you sleep some keep you up so let’s take the right ones at the right time otherwise you up at night and asleep during the day. Hmm I think I heard foot steps last night, was that a prowler or my wife with mixed up meds??? LOL.

Yesterday when we were at the clinic we got information on where to send her blood sugar info and so she did.  Today Sue got information back about adjusting her daily long-term Lantus from 3 units to 5. Now I want to say something because we have friends who have been through the TP-IAT with the Whipple and have the feeding tube and have a much more tough regiment than Sue has and are on a much higher daily Lantus level than Sue is. It is important to remember everyone is different and there are so many things that determine what that level will be.  But ultimately the goal is to hopefully one day not need insulin at all.

Sue also got great news from the nurse today that she no longer has to wake up at 2:00 am to check her blood sugars.  She can finally sleep all night after 11 nights of having to get up.

The day was a restful one for Sue. She caught up on her sleep. I know I have said this many times but I think it is important because I hear for many and so I will say it here again I am really proud of her. It takes a lot to go through this and a lot more to fight to get better. Anyone who does this is a real CHAMP!

Tomorrow physical therapy is coming out. What do you want to bet that person will be blown away too!

No pics today.

Ok the message of the day, DON’T LEAVE HOME WITHOUT IT!
LOL, we left early this morning for appointments and Sue had everything packed up like she was supposed to except something very important, hmm what could that be? Aaa, INSULIN! Oh gee we got to the clinic, got to the exam room and at about 9 am when it was time for her to take her Lantus, the daily long-acting stable insulin, it wasn’t there. In fact, the Novolog (the insulin she takes to adjust her sugar levels during the day before and after meals) wasn’t there either. Utoh! Did we lose them or leave it in the car? We looked at each other with a nervous fright. Fortunately, we had more at the house, 12 miles away. The examination was ending and the nurse, Sarah, was really good and eased our concern and reminded us that even though this daily dose should be given at about the same time each day an hour or so difference won’t make a big difference and we would be back at the house in less time than that. Sure enough 35 minutes later we walked into the house and on the dining room table sitting ready to go were the two insulin pens. We breathed a sigh of relief. And we learned a lesson Don’t leave home without the insulin pens! We were lucky this time we did not need them but next time we could.

The next appointment was in the afternoon and was very informative and one needed. It was with the dietitian. She went over EVERYTHING from soup to nuts literally and she went over Sue’s log. Since Sue is a new Diabetic she is very much into being very careful about her health, so when they told her to keep track of her meals and her sugar levels she went to town tracking it in good detail and boy was that a good thing. It made this dietary training session super. It was so easy to see what she was doing and what she should be doing and everything made perfect sense as a result of her efforts. So what we learned, Sue was thinking that she should gage her meals based on how much insulin she was going to need. WRONG! She needed to start having meals and snacks based on a good healthy and rounded diet. And eat foods that fit into the groups that are right for her, and she went over everything that is best for Sue, Then, calculate what insulin she will need and administer it whether it be a little or a lot. She was told to eat what is right for her body and to use the insulin to adjust the blood sugar levels. That’s how it works and she was doing that pretty good, just a little backwards. Now we have it right. But the good this is we are here to learn this and she is. For those thinking about this, it is daunting at first but if you have a good caregiving partner with you and you do this as a team like we are, I think you will find that it is not as overwhelming as it seems at first. Just to talk about it with someone I know has been a tremendous help and I administer some of the shots to help her and be a part of this and support her. Without a good partner, dealing with this alone will make this even tougher and stretch the post-op process out a lot.

Sue’s platelet count is elevated, actually twice as high as normal, but that is not unexpected. So what does high platelet count mean? Well, Sue, had her Spleen removed too (This is normal with this procedure) and with the spleen gone which governs the health and bacteria control in the body and part of that has to do with platelets. So while the body is getting used to the spleen being gone, the platelets are confused and are all going crazy looking for it so there are lots of them out and about. The Platelets are part of the clotting factor. So, for now, Sue is on low dose aspirin 81 milligrams. They will monitor this for a few weeks. So, ducking Minnesota after 2 weeks like Docter Beilman said we might, will be stretched to 3 or 4 just to be safe.  while they make sure she is A-okay. And that is a good thing in my book.

Sue has cut back on her pain meds. she is pretty lucky Since she had the Whipple procedure before, she did not have the radical reconstruction that goes with this surgery that is known as the Whipple. So, as a result, she is recovering much faster and probably weeks ahead of those who have a full TP-IAT. But she still has periods of pain, especially when she eats right now. We don’t know if this is normal or because she has cut back on the pain meds, but it is something we will ask Doctor Beilman when She sees him later this week. Other than that, the girl continues to be the Champ!

For tomorrow,

The Homecare nurse comes and checks her out and then a day of rest. Even though she is feeling good it has only been 10-11 days and she still needs to rest and recover, those are Doctor Joes’ orders!

The pic of the day!

DONT LEAVE HOME WITHOUT IT!

Sue’s first night at home went pretty well. She was a bit nervous worrying about her sugar levels but to her surprise they were ok. A bit high but it did not need not need any correction.  Considering it was 91 at bedtime this is just unbelievable.

The nurse came this morning and gave Sue a good check over and was very helpful in making sure she had everything she needed and that it was readily available to her. She set things up for the weeks ahead to make sure everything is in order should there be any problems.

Finally, with a little trepidation, it was time to venture out. We needed a few things for the house and some food items better suited to her diet. although she can eat what she wants Sue is doing as much as she can to go “by the book” and listen to what the doctors and medical team suggest in order to give this Islet cells EVERY chance to implant and survive. After 6 years of constant pain and a week of misery as this pain subsides, she wants it to be a good thing and feeling.

So the day trip out was just a trip to Walmart.  We only picked up what we needed as we are being extremely careful with expenses. But it was good for Sue to get out a walk. In the hospital, she was walking up to 5 times a day. today she got them all in in one shot, but she did it. Now she is tired, but that is ok. Pain is at 2 which it has not been in years. Pain meds were taken a few hours ago.

For Dinner,  no correction was needed at 118 and Sue calculated things like she was doing this for a long time.  She is really adjusting to her changes very well. A few days ago she was going crazy worrying how she was going to handle all this. She getting the insulin and the enzymes down pat!

For tomorrow, a 7 am appointment at the clinic to go over many things from blood to diet to a full check up. We expect to be there for 6 or 7 hours. This will be a good training for doing Sue as she is out for the day and dealing with the insulin testing and eating out. This will be the first time since the surgery and actually the best place because of any place to do this someplace where people understand what your doing is a great place to start.

Pics from today.

Sue heading out, a bit nervous.

Shopping, Can you believe this 9 days after the evil organ was removed!

THE CHAMP IS HOME!

Sue did it! After 8 days and about 2 hours after the “Evil Organ” was removed Sue made it to her temporary home and had her traditional Filet-O-Fish sandwich. She measured her blood sugar set everything up and cleaned the house, YEP! she feeling pretty good! She is still on her pain meds and the ride home went really well. I have to hand it to her having a house was a great idea because it is so much more comfortable than a hotel.  More space and more relaxing. She did a lot of research and the AIRBNB came in just perfect. Check the Links page for more information. For the first time in 8 days, she actually got about 4 hours of uninterrupted sleep. Something she really needed.  Dinner went well and the evening is QUIET! Wow, nothing against hospitals but true recovery begins at home!

As we were leaving the hospital we stopped at the hospital pharmacy.  I did not know I would need a wheelbarrow to haul all the drugs away, lol (just kidding but it was a good size bag full). They really thought of everything when they sent Sue home and then some. She has a home nurse coming in the morning and that is great. We think we understand what to do but having someone go over everything including the house and the do’s and don’ts is really going to be a tremendous help. Now we just sit back relax and let Sue heal. I must admit I am a little happy. For the first time in a long time, we actually have a chance to be alone together and it’s not a vacation to some trip for something. We can use this time to just be together. I like that.

What’s up for tomorrow. – The home nurse will be here in the morning. We do not have any plans. The doctor told us we can venture out depending on how Sue feels. NO driving while she is on the pain meds (yes they are narcotics but short-lived as she heals and the pain subsides). The doctor said it would be about two weeks for the incision to heal well and the pain to fade to nothing more than a dull ache and probably 3 to 6 months for the scar tissue to form and she is back to her old normal self and truly healed. She will need to be careful till then of course like any other surgery. She can go and do things as long as she can sit if she gets tired and winded. I know she will want to do something. She has plenty of energy after being cooped up for 8 days we just need to start out slow.

Pics from the day.

Morning came on the 8th day, “ok let’s get this show on the road!”

The last time the port will be used (fingers crossed). It is being flushed and heprin is added to prevent clotting. It will stay in until December when Sue comes back for a follow-up and if there is no reason for it, Dr. Beilman will have it removed then.

The hospital vampire struck! LOL. This was from the Arterial lines placed just before surgery. The lines were removed late yesterday afternoon, then bandaged. Those lines delivered strong pain meds after the surgery.

Getting ready to go. Yeah!

Just like any other hospital, packed ready to go! Then you have to wait for transport…

A stop at the pharmacy to load up on medications, but first, read and sign!

Home at last! Now for my Fish sandwich!

You know what, after what I’ve been through I deserve 2!

No nurses, Now I have to figure out when to take the meds…

The drug store! Keep in mind Sue was lucky. Because she had the Whipple previously she does not have all the meds a person who would have a full TP-IAT surgery would have. But she did have the other part 6 years ago.

To day is Filet-O-Fish Day! Everything is set for discharge. Sue had a good night as much as can be expected without the IV pain meds which is what she needed so today she can go home. Yay! Everyone is amazed at Sue and her determination and spirit to get through this and we sit here and constantly thank the Doctors and Nurses but most of all God. We still believe he paid is a visit in the form of a chaplain on day 4 when she was having such a hard time. Wow what a tremendous uplift for both of us that was. We are sitting here waiting for things to get finalized and I know Sue is so much better, she cleaned up her room, lol! She packed everything. She is excited.

So they are timing things with the meds to get the best impact fo the 12 mile ride home, but actually it is mostly freeway so it will be quick an once home she can really rest. No more roommates noise hourly pokes or prods and how are you doing, well I can do that so she doesn’t have any hospital withdrawals,  lol.

Well, I think about were we were a week ago. As each day went by it seemed to drag out, but today. I, we are glad it’s over and she is headed home.