Hello again!! I have decided that I am completely the worse at keeping everyone updated on here, oops!

My dad left Froedtert hospital back on November 15th and came back home, which means he has almost been home now for 113 days today and next week would make it 16 weeks or four whole months! We have had ZERO hospital admissions since and it truly is a great feeling. Even with him having covid around the holiday season in December, we have managed to keep him out of those hospitals and back home here, in the friendly comfy confines of his own home. He has been doing great. We still have a long road ahead in terms of continued recovery, but can say that he has progressed extremely well thus far and we will continue to work hard each and every day. 

Here are some of the updates and changes that have happened over the past (just about) four months. When he came home, he had been cleared for full liquids, with some small bite sized foods and was continuing with his tube feeds to meet the full nutrition needs. He was scheduled to get 2 cartons of tube feed, 3 times a day. We have gradually weaned him off the tube feeds and now, he is eating all of his nutrition himself, with no more tube feeds. We are hoping to get the feeding tube removed in the next month. We just went and saw a GI specialist last week and this week, he will undergo a repeat video swallow study to ensure that his swallowing function proves he is ready to have the feeding tube removed. He has been eating solid foods and much more of a "normal" diet. Some of his favorites include chicken sandwiches, fish fry and chili (especially from Plier's full circle 😊), cheeseburgers, hamburger helper, ice cream, sloppy joes, and whatever else I decide to feed him 😂. The other important pieces that need to be accomplished prior to removing the feeding tube include being able to take all of his medications by mouth, which we have been doing for over 2 months now and meeting his hydration needs. I still give him some water overnight through the tube just as "extra hydration". And lets be honest, we could all probably afford to drink more water every day, so he is certainly not the only one not drinking "enough".

He has not been on any oxygen since leaving the hospital. When we first got home and up until very recently, he was still requiring quite a bit of suctioning through his trach. He usually would need suctioning in the morning and before bed, as well as 3-4 times throughout the day and night. I sleep in my bedroom, but do keep a baby monitor on at all times, to hear if he is coughing or may need any suctioning. You can say my anxiety was running awfully high, especially in the very beginning days of bringing him home. We have not been able to get any in home nursing staff, like we had expected and planned for prior to leaving the hospital. I have provided all of his care with the help of our family and friends and do spend every night with him. His cough has gotten much stronger since he came home, which is why he now does not require suctioning down his trach. He does still have a cough at times, but he is able to clear his throat on his own, which is a tremendous improvement. We work on using breathing exercise devices, "the breather" and incentive spirometer daily, to continuously help him get stronger. We also had a cough assist machine at home that we used in the first couple months to help him clear his secretions, but have not been using it anymore. We are hoping we can take the trach out soon.

As I have mentioned many times since he was first diagnosed in May, maneuvering through the health care system has been extremely challenging, and still is. We have been in and out of so many different health systems (we started at aurora, then moved to the long term acute care with a whole new health care team, and then from there went to a skilled nursing facility, prior to coming home). Each time you move facilities you are no longer followed by the same care team and fall into the care of all new hands. This makes things challenging and it really is easy to get lost in the system. So with that being said, we had switched him over to the Froedtert health system when he was in the last nursing home. However, the nursing home still has a "primary doctor" for him there that technically "manages" his care, despite never being present or available throughout the entire time he lived there. After the last hospitalization, we decided enough is enough, we do not want him going back to the nursing home. (best decision we could have made, in terms of making real progress for him). And then we got home, and we had to get "established" with so many doctors and specialists in order to get the things done that we need. The first available neurology appointment we could get scheduled was for May 2024, despite him having a neurological disorder, and not having any one following him since we had left the LTAC in West Allis back in July. After making numerous requests and voicing my concerns to the primary care doctor and our home therapists, we were able to get the neurologist to move his appointment up from May to today. (YAY!). We are currently here now waiting to be seen. 

I have many many questions for neurology and am hoping they can give us the insight and answers we are looking for, as well as help us manage his care moving forward to get the care he needs to help with the recovery process. He has gotten much stronger since coming home, but still cannot move his hands or lift his arms without assistance. He can move his legs much better, but we are no where near getting him to stand or consider walking yet. He is still experiencing numbness and tingling in his hands, arms, and feet. He still gets dizzy with position change (particularly when rolling side to side in bed) and sometimes his eyes roll toward the back of his head. He still experiences blurry and sometimes double vision. And his vocal cords remain weak, causing his voice to remain soft spoken and somewhat raspy. We have also heard from a family friend who works in occupational therapy (and has worked with Guillain-barre patients specifically) that she has seen patients who will do repeat lumbar punctures and continue to test for the antibody in the spinal fluid for guillain-barre. These are all things we are looking to address with neurology today. I hope they are willing to repeat testing to find out if my dad still has these antibodies present and if so, we can discuss whether he may be a candidate for chronic or repeated plasmapheresis. He had gotten one round of this back in July of 2023, and some patients continue to do this to help rid these antibodies from the body, that are causing paralysis. Fingers crossed we get some good insight and recommendations today.

We also were told we had no one "managing" his trach and have had a hard time determining how to go about getting established with a laryngologist to move forward with getting the trach out. We finally got the referral we needed and will be seeing Dr. Bock on March 21st. Today he also had a repeat video swallow evaluation, which went great. This is another check on the list, in terms of moving forward with getting both the trach and feeding tube removed. 

We continue to have in home physical and occupational therapy twice a week and speech therapy once a week. These three ladies have been wonderful to us and are truly supportive. We are hoping that we can eventually transition to a more aggressive therapy program in an outpatient setting. We will see if the neurologist can get us into the Neuro rehab program at Froedtert. 

We did just also get his new wheelchair last week. It is pretty high tech, to say the least. He is able to drive the wheelchair using his head. There is a sensor close to his cheek that he can tap to change the mode on the wheelchair including adjusting his footrest, tilting the chair back or upright, and driving forward or in reverse in both indoor or outdoor modes. He said he felt like he was driving hammered 😂 because it is very touchy and can be difficult to drive straight. He still feels uncomfortable sitting up for long periods of time, his butt and back get very sore, and after some time it's still unbearable for him. We are working to sit in the wheelchair for 2 hours a day, and hoping we can make adjustments and also get his body adjusted to be able to "tolerate" it. 

We have had many visitors and have some weekly visitors and we love it. If you are interested in visiting, don't be a stranger and stop by or reach out to me if you'd like. I will work on posting some videos and pictures soon and keep you updated on how the neurology appointment goes. As always, thank you all for your support and love, it surely takes a village, and we are so grateful.