Craig's Journal

It is with a very broken heart that I post this message. Craig lost his battle with Multiple Sclerosis on Saturday, December 1st He is now completely healed, walking the streets of Heaven. Thank you for all of the support to me since joining this sight in 2016 when Craig had his aortic valve replaced. He was my life, every minute of every day as his full time caregiver and wife. I miss him terribly. https://www.reynolds-jonkhoff.com/obituaries/Craig-Gay/#!/Obituary

Thursday marked the two year anniversary of Craig having his aortic valve replaced. It has been a rough year for Craig with his Multiple Sclerosis progressing. Since August 2017, Craig has spent a portion of ten of the months in the hospital, much of it in ICU. He is now a seven time survivor of Sepsis/septic shock. In April of 2018 he became unresponsive at home and ended up with pericarditis, pericardial effusion, cardiac tamponade as well as pleural effusion. He had emergency surgery to get the fluid off of his heart. Now left with diastolic congestive heart failure. The great news is that throughout all of this, his On-X aortic valve is doing well despite how sick he's been. We continue to be a bit overwhelmed with his MS. Yvonne

One year ago today, Craig had his aortic valve replaced. His heart problems were caused from Endocarditis in January of 2015 so fortunately for him, he only had to deal with his symptoms for less than two years. His most recent echo shows very minimal leak around his aortic valve in which we are grateful for. His mitral valve continues to leak moderately so his cardiologist is watching that. With regards to Craig's heart, he's had a very good year and we thank God he is no longer short of breath and having a racing heart. This year has been a huge struggle, mentally and physically, for Craig when it comes to his Multiple Sclerosis. I just brought him home again from the hospital on September 1st. I'm still Craig's full time 24/7 caregiver and have my hands completely full. I am truly blessed to be able to do it though, and wouldn't have it any other way. On a good note, we've had a little taste of fall and now it's back to summer :0) God bless you all!!! Yvonne, Craig's wife

I brought Craig home yesterday after spending 3 days in ICU and 7 days on the neurological floor. He went into septic shock but he pulled out of it and although his blood pressure remains low, it's better. He lost his ability to walk on Sunday the 18th and woke up drenched in sweat. With his bout with sepsis in January of 2015, they had to remove his sternoclavicular joint, clavicle and first rib, and he got Endocarditis that resulted in his aortic valve being replaced on September 13, 2016. Needless to say, I was a wreck until we were assured no bones or organs were infected. The Dr recommended transferring him to a rehab facility upon discharge but I chose to bring him home and to have in home health care come to our house. That way, we are in control of his schedule and his fatigue can be managed much better. Last night he slept 12 hours straight so in that aspect, I know I made the right decision. It is going to be a long haul for both of us because he's not regained his legs back. In fact, he can barely stand to get into the wheel chair. I pray for a cure for Multiple Sclerosis. It has really progressed to the point of not knowing what his new normal with be and I'm scared. Fatigue affects his cognitive, his speech, his swallowing, his depression, and his strength, to name a few. I hope to get him rested up here at home and pray some of those functions return. The good news is that after he had to get a frozen plasma transfusion before his central line was put in, his INR was brought right back up to the appropriate level and it remains in the right level. His heart valve is still ticking and has returned back down to upper 70's at rest so it's doing a great job. Prayers for those with upcoming surgery, that are on the healing side, and for those of you just starting this process. God bless you all. Yvonne (Craig's wife)

The great news...Craig had his aortic valve replaced on September 13th. His heart is ticking wonderfully and INR levels have been managed very well. The not so great news...Craig was admitted into the hospital last Sunday. He was moved out of ICU yesterday so we are moving closer to the front door. He has a UTI and sepsis. We thank the Lord for choosing a mechanical valve so this infection didn't travel up and latch right on to that new valve. Now more than ever, we are confident in the choice we made. Please pray he gets to come home for Christmas. Today is his 49th birthday and its bad enough being sick for that. From our house to yours, wishing you all a Merry Christmas and here's to a healthy, happy New year!Yvonne and Craig

It's been ten weeks since Craig's AVR. He's enjoying cardiac rehab three times a week and he has come to realize that steady wins the race. He wants to push his limits and they have encouraged it however overdoing it, makes his body spasm and his legs very weak because of his multiple sclerosis. His heart is perfect though :0) Next Monday, he is also starting speech therapy to help with cognition, swallowing, and word articulation. Thankfully, both therapies are in the same building and I've been able to schedule them back to back thru the end of December. We want to wish all of you a very special Thanksgiving tomorrow. We will get to spend the day with our three children and their families. We are truly blessed. God bless you all!!! Craig and Yvonne

Hard to believe 7 weeks ago today, Craig had his aortic valve replaced. He is doing wonderful in regards to his surgery. He experienced a little bit of Afib and his blood pressure was a bit high so he's now on a low dose of Metoprolol Tartrate which has helped. Pain is minimal where his incision is. He started cardiac rehab on October 20th and has worked up to two ten minute sessions with a ten minute break in between, on the elliptical bike. He loves the individual attention he is getting. We go in fifteen minutes after everyone else has started so the staff is free to spend time one on one with him. After the first session that was orientation (basically in take of information) and ten minutes on the bike, he took a six hour nap. They realize with his MS that he tires quite easily so they are going very slow with him. This week he starts three times a week so hopefully his stamina will improve with time. Craigs INR is kinda giving us some crazy numbers the last two readings. The management went from his surgeons office to his PCP and its frustrating to say the least. I guess I just have to have confidence that she'll get it back under control, just in time to reduce it in another month :0) It is sunny and 66 degrees in northern Michigan and the colors are absolutely gorgeous. I hope this finds you all healing well. It is quite the journey for all involved, but time sure flys. Prayers for those of you with upcoming surgery. Yvonne (Craig's wife)

Hard to believe it's already been 4 weeks since Craig's surgery. He is doing quite well considering all that he's gone through. He still has quite a bit of pain in his chest but we've got that managed. We are thankful for many things 1)No problems with staying within the INR level. 2)So far, his kidney function continues to be at the "normal" level which indicates that his valve had more to do with his kidney disease than anyone thought, including his nephrologist. They will continue to keep an eye on it. 3) He is walking around the block a couple of times a day, which is almost a mile, as well as spending some time outside as we are having beautiful fall weather. 4) His occular migraines have subsided. All in all, we couldn't be happier about his recovery. Next Tuesday will be his follow-up appt with his surgeons office and then his Coumadin and care will transfer to his primary care physician. Cardiac rehab will start with an orientation next Thursday, the 20th. His oxygen level continues to drop with no pattern. Yesterday when the nurse was here, it was 86, just sitting in his recliner. We still have hope this will improve with time. We hope everyone's' recovery is going well and to those of you having surgery in the near future, we wish you all the best. Craig and Yvonne

Craig's doing very well!!! This is day 10 post-op and Craig slept almost 10 hours last night. We are very fortunate to own a hospital bed that's very comfy and allows the head and legs to be raised just like the ones in the hospital. I truly feel that has been a saving grace.I of course woke up in a panic at first but it sure felt good to get 8 hours of sleep myself. We had a visit from in home health care nurse yesterday. She drew his blood to test his INR and it's holding in the perfect range. He's only having to take 2.5mg of Warfarin. We'll see what it is Monday at his PCP visit. His appetite isn't good but I'm freezing Ensure Enlive for the protein and calories and he seems to love it. His pain is managed and he's getting stronger every day. His wounds are healing great and he's enjoying his morning showers. We hope and pray that all of you get to where Craig is now in his recovery, very soon. Here's to good sleep, good appetite, and managed pain! We truly appreciate all of the support!!! Craig and Yvonne

Lethargic, 101.5 (with 650mg Tylenol), WBC climbing (14.8), INR 1.7 (needs to be at least 2 to discharge). Oh. And that appetite, he didn't eat anything else on that page and had just had Ensure protein shakes since. They ran a urinalyses on Saturday and one again today, both came back negative. Chest x-ray showed very small...ugghhh can't think of the word but they do not think that is causing fever and elevated WBC count. Needless to say, they are working hard to find the cause. They'll do blood culture tomorrow if fever continues. Good news: His Valve is so quite he just heard it today clicking for the first time. He also got his neck catheter removed this morning so that is a blessing. He only has one IV now for the magnesium and whatever else he might need. And drum roll please... They gave him a quick shower today, hoping that might make him feel better. Here's to a better tomorrow! Thinking of you all, Yvonne

After a very stressful day yesterday trying to get Craig his medicine that he takes on a regular basis for his MS, (nothing to do with his heart) today is a day of rest. They finally had me personally met with the pharmacist at the hospital to set up his scheduled meds to match how he takes them at home to manage his symptoms/ pain. A PA that has never met Craig and is not a part of the surgeons team came in and deleted all of his meds that I had spent 2 hours reviewing on a pre-op registration nurses call and then again at check in the morning of surgery. The surgeon made them restart them and said they should never have been stopped ( even while on vent, they should have crushed them) and whoever reentered them into the system duplicated some and left some out. Twice yesterday I had two different nurses almost overdose him by by trying to give some 2 hours apart or by two doses at once. Thank God I know what I'm doing and I take my full time caregiver/advocate job very very serious. I have found that through the many hospitalizations over the past couple of years that any nurse that tells you how many years she's been a nurse (without you asking) and that you're not the only patient she has when questioned about something, is not going to end up with Craig as her patient for her entire shift. And furthermore, won't be his nurse the strain of his hospitalization. There really is no need to be defensive with me or get upset when I correct something, because ultimately, we should both have the same goal and that is giving Craig the best and most accurate care. Whew, it's stressful to say the least. I will not compromise my husband care. Those that appreciate my help in getting to know Craig and his needs are absolutely lovely. Those that resent it, are not his nurses again. Those that know me, know I'm factual, don't exaggerate, and only want what is best for Craig. Ok, rant over :0) Still struggling with very low BP 74/42 so he's still on on Dopamine. WBC is elevated, just watching but day is typical. Yesterday Craig walked 100 ft twice and that was too much. He's been napping all day today and just working on spirometer.

Praise God, the vent was removed about 6:30 this morning. Still no pain relief, very rough night. Waiting for speech therapy to come before he can start his thickened liquids. Kidney function is awesome. Blood pressure continues to be very low but they are just watching it. First thing out of his mouth was that he feels like he was hit by a Mack truck. No recollection of yesterday at all. Praise God from whom all blessings flow. Thank you for all the prayers and well wishes.Yvonne

Craig's surgery lasted 5.5 hours and was a complete success. He is struggling because some PA decided to withhold all of his normal medications from him instead of crushing them and making sure his symptoms from his multiple sclerosis didn't treat their ugly head. The surgeon however took charge and they've all been ordered and soon should be delivered. He's struggling with low blood pressure and heart function so they will try to remove the vent tomorrow. When his eyes open, tears run down his cheeks. They are keeping him lightly sedated but he's still in a lot of pain. He takes oxytocin and oxycodene every day for pain, without having heart surgery so this dylaudid is not cutting it. I'm trying to get something that lasts longer and works better since they will be giving him all of his normal needs except those two while he's on the vent. Thank you for all the well wishes and support! Yvonne

Craig is resting comfortably and I'm about ready to hit the bed myself. We'll leave here at 5:00am for 5:30 check in time. Surgery at 7:30, 4-5 hours of surgery. He will be admitted to the critical care unit and recover right there. The length of stay will depend on his Coumadin levels getting to where they need to be, they told us to plan on 7-10 days. Please pray for Craig's Multiple Sclerosis to stay calm and that this doesn't throw him into a relapse. His pain and symptoms are pretty much managed with the 16 different medications he's on. I'm hoping that vent comes out quickly so his body doesn't start misbehaving without all of his normal medications. I plan to stay at the hospital every day and night with him to assure they don't give him any unthickened liquids and to speak for him as with his cognitive issues, he has a hard time saying what he means. He's a people pleaser and his words don't match his actions/feelings a lot of the times. I truly have my hands full. I will keep you posted as time allows. It's going to be a very long day. Love and best wishes to you all. Yvonne

Pre-op blood work, chest xray, ekg, and urinalysis in the morning for Craig then we meet with the surgeon and anesthesiologist. Time seems to be flying...Yvonne

We've always been told that Craig would not be a candidate for minimally invasive surgery to replace his aortic valve because of the vegetation on his valve from Endocarditis. Dr. Stirling specializes in the minimally invasive surgery and told us the surgery would take a lot longer however Craig would have a faster recovery. He will have about a 4 inch scar above his right breast. For those of you that had this type of surgery, could you please tell me if you felt the need for the lazy boy to sleep in? I do have a hospital bed that he used all last year that I could put back up if you think that would be beneficial. Our bed is quite high off the floor. I would also like to connect with anyone that has Multiple Sclerosis that had valve replacement. Anybody in this group have MS? Craig also has fibromyalgia and stage 3 kidney disease. I value your input and am grateful for this community. Thank you, Yvonne