Michele & Sherry Update Page

Michele finally made it to RIC today. She's got a lot of hard work ahead of her but she's looking forward to it and coming home. she is in room 642 the address is 345 E. Superior StreetChicago, Illinois 60611 her phone # is 312-238-6421. Visiting hours are 8 to 8

Gremlins everywhere!! Some kind of paper work mixup. One more night in Hinsdale then RIC on Wdenesday.

Happy Memorial Day! There was a misunderstanding between RIC and RML. Michele will be transfered on Tuesday

Great news today. RIC has a bed avalible to Michele and she will be transfered there Monday morning!! Details to follow.

Therapy has being going good for Michele she is now standing and taking a step or two with the walker; sitting on the side of the bed unattended and rebuilding the strength in her left hand and arm. Thursday she will work on bathing and Friday dressing her self.
The trip to Northwestern went well. Michele saw all the doctors and nurses in the clinic. There were a few damp (happy) eyes noted as everyone encouraged Michele to keep up the good fight as she has. The kidneys and liver are working "as good as a 6 month old" per her surgeon. The lab reports show her kidneys are working more than 2 times better then Mom's.
The staff at RML has recommended moving Michele to RIC for her acute therapy. She just needs to wait for a bed to become available. With the long weekend coming it will probably be Tuesday before she moves. The RML therapists guesstimate that Michele will need about 3 more weeks of therapy there before she makes it back to Lombard.

Road Trip! Michele will be going back to visit her Northwestern Doctors on Tuesday for a Checkup. Monday night she slept with her trach capped and no added oxygen. RML is evaluating her to see if see is strong enough to graduate to RIC. Still no regular liquids the next cookie test is about 10 days out.

Michele is trying to rediscover her appetite. She's not real hungry after all these weeks of being feed and the blue food coloring doesn't add to it. She'll spend the week working with the therapists working towards getting her legs going again.

due to remodeling at RML she has moved to room 218 the phone number is 630-286-4265. Since she's had her trach capped she can talk all day so feel free to call and say Hi!

The swallow test was this morning and Michele did very well. She can now have beverages as thin as nectar and soft chopped foods. Anything and everything will be colored blue (I guess the blue spaghetti is for real!) at least till Monday when they reevaluate her swallowing. She got her central line today so no more needle sticks to get blood or give medicine. It is in between her shoulder and neck so it won't restrict any activities

Michele had her trach tube knocked down another size to a 4mm. She will now have it capped during the daytime so that she can talk and breath fairly normal. At night they will still supply oxygen as they have been. If things go well for her then on Monday they will start keeping it capped 24/7 and if they do the cookie test by then she can start on easy foods. Therapy today from physical in the morning and occupational in the afternoon. The doctor that does the PIC lines can't make it till tomorrow so she'll have one more day with the IV in her hand

No blue drinks today but the talking tube works. We were finally able to hear Michele's voice (1st time in about 5 weeks). She sounds great but it takes a lot of work. She spent about 3 hours in the chair in 1 sitting. Her occupational therapist said she's ready for physical therapy also so she will probably have 2 sessions tomorrow depending on when they put her PIC line in. They've been moving the IV around as her veins collapse, they were hesitant to put a PIC line in due to the chance of infection. They finally came around to Michele's way of thinking and will put the line in tomorrow also

Today Michele handled the blue thickened juice just fine. Tomorrow is blue nectar followed by watery blue. These are liquids they add a blue dye to test how she is swallowing. When she drinks them if her swallowing is working right they should go to her stomach and there should be no blue coloring in her trach tube. If there is then the blue stuff might be going down "the wrong pipe". The path to the lungs and to the stomach are right next to each other in the bottom of the throat. There is a flap that closes to protect the airway. They use this test to make sure that muscle didn't get lazy.
After finishing the blue liquids then she will get the cookie test. Where they coat or mix them with barium and the watch her swallow with a video (x-ray). I not sure if the nurse was kidding or not but she said the blue spaghetti was pretty wild.
Michel sat up on the side of the bed for a while in therapy as the therapist worked different muscles. She also got the size of her trach tube reduced from 8mm to 6mm and will try the talking tube tomorrow. She tried it today but it didn't work as the hole from the trach has to shrink down to the 6mm to prevent air leaking around it

Michele had a little fever this morning so that cut back on her chair time. Yhe therapist came to her room to do his thing. Monday morning Michele got to have Blue Applesauce (1st real food in about 5 weeks) to see how throat was working. She handled it well so she maybe trying other blue foods soon

Working hard today - Sat up in the chair once in the morning and once in the afternoon; each time for an hour

Working hard and fighting the pain - that will be Michele for the near future. She met a few more Doctors today. Nobody will speculate on a time line - it's all based on how much Michele can take in a day. The physical rehab here is not as intense as an RIC type situation. But they will build her strength so she could go to that type of rehab and fully participate. That could be as in or out patient depending on how her progress

Michele spent most of the day meeting her new doctors, nurses and therapists. Occupational therapy starts tomorrow. The main goal initially will be to get her off the trach collar and get her talking and eating. The will start by reducing the trach size probably on Monday.
RML is in Hinsdale on County Line (which is east of 83) road just south of 55th street. Her phone # is 630-286-4293. Visiting hours are 11-9

Michele is on the move again! This afternoon she will be transferred to RML specialty in Hinsdale to begin her rehab. Details to follow.

http://www.rmlspecialtyhospital.org

Still fighting sat on the edge of the bed for 30 minutes then went down to the gym for an hour with out any complaints. Should be the same today. She also will have a "cookie test" to see if she is ready to swallow again. Mostly to make sure the throat muscles work and that she can control that it doesn't go down the wrong pipe. Not sure why it's called a cookie test though. The way it was described to me she will drink barium while being x-rayed

Everything is going pretty good. A little bit of thereby but a lot of pain; but Michele keeps fighting to come home

Michele is on the move!! She is on her way to the 11th floor. Room 1110 - 312-926-1110. When they get her up there the will focus on getting her on room air and making sure she can swallow ok. Then they will put a cover over the trach so she can begin talking and eating. She will also work on building her strength back up so she can go to rehab.

Don't want to forget Sherry since this is the Michele and Sherry update page. Sherry had here MRI on her liver last week and everything is good. Didn't get the exact size yet but it should be able to hold a glass or two of wine!

Michele had a good day Saturday she is now free of the ventilator to assist her breathing. She is breathing the enriched air thru her trach collar on her own. They will work towards removing this air then she will be back on her own. On Friday the therapists were able to get her sitting on the edge of the bed for about 10 minutes. No therapy on the weekends but she continues to exercise and work hard. They are talking of moving her from NICU soon

Today should continue as the last 2 have. She made it over 10 hours on her trach collar till she tired yesterday so they will keep pushing that till she can do the whole day. Unfortunately therapists couldn't meet with her yesterday but will try again today

Today should be about the same as yesterday for Michele. They will have her breathing thru her trach collar for at least 12 hours and the therapists will be stopping by to work with her also. They took one of the drugs out of her diet today which will help her be more alert. She's getting the spark back in her eyes, she's now asking us today exercise her limbs instead of getting mad when we do it.

Michele had a busy day today. Spent about 12 hours of the ventilator and breathing thru her trach collar. The therapists came in and got her to sit up on the side of the bed (1st time off her back in over 3 weeks). They are working on getting her on a regular routine for her anti-seizure meds. Tomorrow for therapy and more time off the ventilator

Michele spent about 2 1/2 hours of the ventilator this morning with no problems. So they will do it about the same this afternoon. Then try for 12 on Wednesday and 24 on Thursday. When she is off the ventilator she has oxygen hooked up to her trach tube that she breaths. After ridding her of the ventilator they will then work on her w/o the oxygen. Her fever is still gone. She can put her tongue away though it still slips out as she relaxes. They are also going to start reducing the medications so she be more alert

Michele went for an hour and a half off the ventilator last night - Much better then expected. They will increase the time off and decrease the rest time from there today. Her fever also seems to have broken - only one course of tylenol today. And the swelling in her tongue went down enough that she could pull it in - All good signs