Two Down and One To Go

As usual, this has been an interesting trip to Ann Arbor. We drove in on Monday afternoon and are staying at
Hampton North for three nights. Knowing that a winter storm was coming in and also scheduled for early appointments on Tuesday morning, it just made sense. Ron had his infusion of antibodies to help prevent infections on Tuesday. He had a hospital-type room in the infusion area of the adult bone marrow transplant clinic in Mott Hospital. All of the pediatric BMT clinic and hospital areas are also on 7th floor Mott but on the opposite side.
Ron's bloodwork showed that one of his white blood cell counts had dropped more (ANC .9), so he had a shot to boost this count, and they decided to have more bloodwork on Wednesday to screen for several viruses. It will also be a re-check of his IGG antibody count and a CBC. This blood test was after ECP light therapy.

Well, we did have the winter storm!! Ron and I returned to the hotel on Tuesday in sleet and wind, and then overnight we had 6 inches of snow. That was the most we have seen this year. The temp stayed 31-34 degrees, so part of it was rain. Now we are having light snow tonight but shouldn't be a problem to get out for the last appointment at 8:30 in the morning. ECP light therapy --and we will know some test results. We should be back home to Gilead Lake by 2:00 at the latest.

The storm took out the Direct TV and analog for about 24 hours, and many tree limbs were broken, especially in the tall evergreens. I figured out how to get the Indiana basket ball game on Watch ESPN on our IPad---throwing out another thank you to the group who gave Ron the IPad about 2 years ago. I use it everyday, and it is my most convenient link to our community of family and friends. Almost all of my blogging is done on the IPad. I also keep track of the weather for our travels, and I use Ron's U of M Health link for tracking appointments, test results, and I can communicate with Ron's nurse, PA, and Doc. So again, thanks!!

We continue to feel and hear your expressions of support in many ways. It means a lot to us! I need to let you know how important that is. This has indeed been the long haul. It was almost three years ago that Ron started having the first infections that were the onset symptoms of his leukemia, AML. We will be able to start biweekly ECP treatments in April. Weekly treatments are scheduled through March.
Love to all of you,
Ron & Jan

Home for the Winter Storm

Ron and I are both hoping that our weekly trips to Ann Arbor are pay-aheads for weeks at home when spring and summer arrive. Hampton Inn North has become our regular home away from home when we return for clinic visits. We continue to learn about insulin and have not yet found a regular pattern to the dosages that Ron needs when I check his glucose level four times a day. It doesn't always make sense with what his diet has been. The doc upped the evening dose of his long-acting insulin, and he doesn't always need more units at the checkpoints throughout the day.

The other med change was halving his blood thinner med, lovenox. His platelets are running lower again, and he has been on this med 3 months. Ron continues to gain back weight, nearing 160 pounds fully dressed at the clinic. His bloodwork this week showed that his immunity is low, so he will have another IVIG infusion next week to help prevent another infection by giving his immunity a boost. This is the infusion that takes about six hours and is a gift of antibodies from a thousand donors.

I am up late! The wind woke me up but no snow yet...it is on its way. I always see so many things that need to be done when we get home. We are going to celebrate Ron's mother's birthday on Sunday. She will be 92 Monday.

Hoping for a snow day for our Ohio teacher friends and family!
Love to all,
Ron & Jan

Time to catch up...

This is just a quick note to let you know that things are going well. Ron's at home nurse ( not me) has discharged him, but he will continue to have physical therapy at home for 1-2 weeks. Ron will have his two ECP light therapy treatments this week as well as a full pulmonary function test and clinic visit to monitor his progress. I anticipate that the steroid dose will be lowered again, and they will give me feedback regarding his insulin dosing.
More later...
Jan

Weekly Trips Begin

Ron's weekly ECP treatments are underway. Actually, this is the third week--with a 10 day hospitalization thrown in. Last week's treatment was done during his hospital stay for pneumonia. We are realizing more how dangerous that bump in the road was, but it is behind us now. We are still hopeful that the diabetes that developed or was aggravated by the high steroid dosage (to treat the pneumonia) will moderate or discontinue. Today his steroids were reduced by 10mg per day, and he has a prescription for a long-lasting insulin injection pen. That shot will be given in the evening, and he should require less insulin during the day. We are still in the learning curve regarding this process. Yesterday we learned what a Milky Way and a couple gummy worms can do to your glucose. Joking aside, I am now wondering if high glucose is the reason that he has told me that his vision is more blurry at times. He also seemed a little foggy last evening when it was high, and he drank 4 glasses of water at dinner.

Can you believe that February is half over?? My sweetheart was going to take me out for dinner tonight, but he is sleeping soundly after today's appointments that lasted from 8:30-2:30. He resumed the pentamadine inhalation treatment. There had been a shortage of the drug for this for months! He took a liquid that looks like thick bright yellow paint as an alternative. So glad that is over! Ron's appointments next week include his 18 month anniversary tests. As we greet and visit with staff and other patients wherever we go in the hospitals, today I had the thought that U of M is similar to a hometown---a medical hometown. We have developed friendships with so many staff members that we have repeat visits with. Ron met with Tim, his PA, today during clinic visit. Ron's recovery is going well.
Love and thanks for those positive thoughts that you send our way,
Ron & Jan

The Cat's Meow

Yesterday was a long day. In addition to starting insulin injections, Ron was due to have his central line dressing changed and needed new caps on the lumens. I had done all of this when he had his first neostar, so the process came back to me. So as I am standing at the tall counter that divides the great room, I see a mouse run along the baseboard in the kitchen. You have got to be kidding me!!! We had only had a mouse upstairs one other time. Now our Blue Boy is a patient and good hunter. He has caught a mouse in our downstairs before, and he is a relentless hunter. He didn't see it because he was napping on the couch, so I woke him up and told him that we were counting on him to take care of the problem. He immediately knew there was a mouse close by and went into hunting posture. Ron and I went to bed shortly after, but I slept lightly because I was afraid that he would catch it and bring it to our bed to show us. At 5:30 both Ron and I woke up because we heard him coming down the hall flipping the mouse around. He tortures his prey..probably would water board if he could. Mission accomplished.

I am monitoring Ron's glucose 4 times a day, and so far he is needing insulin every time but once. I am so glad that this process is underway. I wouldn't want high blood sugar to slow down his recovery from the infection. The nurses in the ICU had told me how important it was to keep the blood sugar under control.

Love to all,
Jan

Learning about Insulin...

It feels like we have been super busy getting everything in order and organized here at home. There are always many things around the house to do in addition to Ron's care. I had been concerned about Ron's glucose level, so yesterday I learned how to monitor it, and then I entered those numbers in a message to Ron's PA and nurse at U of M. The message was sent through his My U of M Health site. The nurse called this morning, so today I have learned to give insulin injections. Hopefully, this will be a temporary condition due to high doses of steroids when he was in the hospital. He had insulin injections as part of his care when he was an in-patient.

This was a very special day for us. Matt was promoted to lieutenant colonel at MacDill AFB. We had planned to be in Florida this week, and as disappointed as we are that we didn't get to go, I am so very thankful that Ron's bout of pneumonia didn't happen on a trip. I can't even imagine the level of stress it would have been if his hospitalization had been in an unfamilar setting. Niccole traveled from Fredericksburg, Virginia for the promotion. Congratulations, Matt AND Kate - for all the sacrifices she has made as a proud Army wife including 3 deployments and even the birth of Sarah without Matt.

Time for the evening IV.
Love to all,
Jan

Home Sweet Home

Discharge did not run like a finely tuned engine, but we did eventually leave at 5:30 yesterday with medical supplies for caring for the central line, IV meds, and IV pole. The drive was fine. 94 and 69 were clear, and the other roads were snow covered but not a problem. The home nurse was here in the first 5 minutes we were home, and Anne and George were here to greet us, help unload everything, had shoveled the sidewalk, and to help Ron get in the house safely. He is using the walker again to be safe while he rebuilds some strength. No falls allowed!!

A nurse has come today to check him and help make arrangements to monitor his blood sugar. Did I say that it is great to be home?!?!? The lake is a winter wonderland...just beautiful. We stayed home today although Ron had made a list of errands to run in Coldwater. I put the kibosh on that. He will need to stay low-key for awhile giving his body time to heal and to get over the staph infection in his lungs. I think he has more energy today than I do.

It was great sleeping in our new bed.
Love to all, Ron & Jan

Grinding...

Discharge day can be frustrating with all loose ends to be gathered, but everything is in motion to leave by middle afternoon. Ron had his ECP this morning and is resting now. The medical team has rounded, and the decision for insulin at home has not been made yet. If that happens, I will have some education in taking a glucose reading and dosing the insulin for injection. Ron is not going to have oxygen at home. They have monitored it at rest, walking in the hallway, and during sleep last night, and his oxygen level is good enough.

A visiting nurse will come this evening to re-teach me the process for administering his IV antibiotics at home. He has the IV twice a day, so he has having the first one now. Ron will also have a PT at home. He has lost the weight we worked so hard for him to gain over the summer and fall, but I am grateful there was some to lose. He was up to 165 pounds and was back to 145 this morning. We will return to Ann Arbor next Wednesday, February 13 for a clinic visit and two days of ECP.

I may have a little snow to drive home in, but we are going even if we have to follow a snowplow. (remembering the DeCrane wedding where that actually happened:).
Love to all of you,
MOM/Jan/Aunt Jan/and best of all--Grammy

Not Home Yet

I must have been excited about the Super Bowl. I didn't remember that I didn't blog yesterday! We did not go home today because Ron is going to have ECP in the morning at 8:00. The ECP machine is portable, so his treatment will be in his hospital room. His breathing treatments have been changed to using a scheduled inhaler with the same medication as the nebulizer. He will continue to be on Advair and singular for his lungs.

The goal of the ECP light therapy is to "balance" his T-cells, so his new marrow doesn't fight so aggressively. Then he should need less steroids to control his graft versus host disease. The steroids decrease his immunity which leads to infections. Dominoes. We will come back to Ann Arbor two days a week through March for these treatments. Then he should transition to every other week for a period of time and finally, to once a month. Again I might mention that it was wonderful having Dr.Mag on service in the hospital during these 10 days of hospitalization. He will be back in the clinic for Ron's appointment next Wednesday. The continuity is priceless.

So this is what we do. It is our new normal, and we still have every reason to believe that we will be able to resume more of our previous life by spring and summer. I tell Ron how grateful I am that he has been willing to go through all of this, so we can have more time. There have been so many more complications than we ever could have imagined.

Looking forward to going home tomorrow!! We still get excited about returning to Gilead Lake. Our new bed was delivered 2 weeks ago, and we have only slept in it 3 nights! And of course needy Blue will be so happy to see us. He has some Siamese markings and temperament, so there is always lots of talking and meowing.

Thanks for following our journey. We have never felt alone.
Love from Ann Arbor,
Ron & Jan

Things are looking up!

Ron feels so much better today than yesterday, especially better than the previous week, and really all the way back to mid-December. This infection is being treated antibiotics that are a good match to fight it. His previous antibiotics taken since mid-December were not effective, so I am anticipating him returning to how he felt in October and November when we were able to take our Northern Michigan fall colors trip and our trip to Maryland and Virginia. I am hopeful that we can travel to Florida for a week in late winter.

The plan is to go home on Monday. Our Blue will be so happy to see us. My sister takes care of him and our mail when we are in Ann Arbor. They were going to travel this weekend, so she put out dry food and 4 cans of Fancy Feast gourmet cat food. Unfortunately, it ended up that they returned home after one night. Fortunately though for piggy Blue because all of the Fancy Feast had been eaten!

Keeping our eye on the weather for Monday. It is quite wintry again with a little snow each day and colder than last year. We our hoping that our weather will be wetter and temps closer to normal than last year. It was so hot and dry last summer.
Thanks for all of your prayers, happy thoughts, positive thoughts, and wishes for a quick recovery.

Love to all of you from Ann Arbor,
Ron & Jan

A Crossroads...

That is how Ron felt about today, and he said that he is moving forward. It was a long day because he waited until 5:00 for the surgical procedure to have his central line placed. No eating or drinking all day! He is snacking now, and more food is ordered! His weight is back down to near 150 pounds---Cale, we might need his skinny pants back! Ha! His low this year was 142, and he had been back up to about 165 pounds. I will be making my famous macaroni cheese when we get home!! He has a central line because he will need IV antibiotics when we go home Monday. They will also use it for his ECP light treatments. --Beginning to see the end of this hospitalization and the game plan.

Hurry Up and Wait Mode...

But that beats the craziness of the last few days. There are no additional culture growths, so treatment remains the same for the staph. Ron will have the central line (port) put in today, but we don't know what time yet. It is a surgical procedure,so he cannot eat or drink. The veins in his arms could use a good rest!! They will be able to use the neostar port for blood draws and his light therapy treatments.
So the placement of the central line is driving the train currently. He continues to be on 2 liters of oxygen for those of you who know that lingo. It is a fairly low level and much improved from 100% in the ICU at first. Also if you understand blood glucose levels, his runs about 350 after eating meals and 175 in the morning before eating. His steroid medication is being lowered today, and by Saturday or Sunday it will be reduced to his level before the pneumonia.
I am walking here each day, reading the newspapers and my IPad books, watching TV with Ron (we still laugh everyday!), and oh, no, shopping online.
Found out recently that Ron's procedure will be about 2:30 and that we should be able to go home on Monday. The plan is for him to have ECP light therapy on Monday.
Love to all,
Ron & Jan