Archive for May, 2006

5/31/06 3:50 pm

no surgery today after all.  The infectious disease people said it would be a better bet on Friday due to his C. diff infection.  we will await a new surgery time.  but i am encouraged and at peace.  i know we are not beyond God's mighty hand.  And we live each day with a hope of what is to come.

Job 8:21  He will YET fill your mouth with laughter and your lips with shouts of joy.

May 31, 2006 at 3:53 pm 6 comments

5/30/06 6:15 pm

     We have had days of waiting without much change.  Mike's fevers have not returned and he has been usually alert and sometimes communicative nodding and mouthing words.  He has also been getting physical, occupational, and speech therapy in the hospital.  Today they told us that they checked again for infection.  Mike has a bacteria called C. diff which is extremely common for those in hospitals on antibiotics which kill good bacteria and allow C. diff an opportunity to thrive.  The original tests for this had been inconclusive and they cannot be sure whether it is what he had all along but that is an option.  They are now treating it.  Mike is also scheduled for his shunt surgery tomorrow morning at 8:30.  As of this moment they are going ahead with surgery despite the infection but will have to reassess in the morning to be sure.

     Please thank God for the diagnosis and pray that the infection clears up quickly.  Also, pray that surgery is able to go smoothly and takes care of the fluid buildup for good.  Pray for our patience as we readjust our schedules to God's good timing.  Thanks again for all the encouragement and Scripture.         –michelle

May 30, 2006 at 6:21 pm 6 comments

5/26/06 10:10 pm

     In The Phantom Tollbooth (a children's book) by Norton Juster the boy accidentally drives his car straight into the Doldrums saying, "It looks as though I'm getting nowhere.  I hope I haven't taken a wrong turn."  I have felt the doldrums a bit this week.  No updates because we didn't seem to be going anywhere.  Or really going a lot of places to get nowhere.  Mike's temperature has gone down and stayed down and they are taking him off all antibiotics.  It does not seem that the fever was linked to an infection but they may never be sure quite what caused it.  The fluid in his head has continued to fluctuate up and down so they intend to finally put in an internal shunt from his brain to his belly which will take care of that for good.  That surgery is tentatively aimed for Tuesday and will include a few days after for monitoring.  Mike is still sleepy but alert at different times throughout the day (or night). 

     To leave the doldrums the boy needed to notice where he was and change his thoughts.  So I am trying to feed myself more of God's word to get where I really want to be.  We know that God has charge of each moment of this journey and every stop along the way.  He does not waste a moment.  So i believe this is for his glory.  And therefore i will praise him for this opportunity too.          –michelle

May 26, 2006 at 10:24 pm 8 comments

5/23/06 10:57 pm

Mike is continuing to evade diagnosis today.  They have no certainty about what is spurring his fever.  His head has also begun swelling again necessitating a CT scan tonight.  This is not an emergency situation even if there is a buildup of fluid on the brain because the missing skull flap allows for swelling.  He is being transferred back to Edward at our request so that the medical team most familiar with his history can continue their care.  Central DuPage has been incredibly accomodating for our brief visit.  Please pray that all of this can be understood and addressed quickly and efficiently so that focus can return to rehabilitation instead of stabilization.  I don't quite know what God may be up to in our tour of greater Chicagoland hospitals but I trust his plans are good.

May 23, 2006 at 11:03 pm 13 comments

5/23/06 10:40 am

Nothing much to report quite yet.  Mike was actually transferred to Central DuPage Hosptal.  Once he is on the road it is at the paramedics' discretion where he needs to go.  He is stable and they have been doing tests and x-rays which are still inconclusive at this time  They are still maintaining that it is either pneumonia or an infection common to someone in Mike's position who has been in a hospital setting and on antibiotics for such a long time.  He is on oxygen again and so the trach is not capped and he cannot speak.  He is squeezing hands to communicate.  He is alert and seemingly more comfortable.  When we have information, we will update… keep praying– and praising God for what he has done, is doing and is about to do even as we watch. 

May 23, 2006 at 10:43 am 5 comments

5/22/06 9:25 pm hurdle-

     i am writing really quickly before i really have much actual information together.  Marionjoy's doctor just called and reported that Mike has been spiking a fever today which they addressed with tylenol.  however the fever has returned and they are not wanting to simply monitor it at all night since it is not responding to the tylenol.  so mike is back to Edward Hospital as soon as they get the ambulance to transport him.  He has been on antibiotics for a while so whatever is causing the fever is not being addressed by his antibiotics.  One possibility is that he aspirated (something went down his airway somehow) and that could cause this response.  Mike is very sleepy just like anyone who is sick with a fever.  They will most likely be doing some tests and monitoring and hopefully we will have some answers tomorrow.  Please pray that God uses even what seems like a hurdle to me to bless Mike and others.  Pray that his body would be bouncing back and his rehab would be able to continue as impressively as soon as possible.  Praise God for the thorough staff at Marionjoy and again the wonderful Edward staff for their care for Mike.

Micah 7:7     But as for me, I watch in hope for the Lord, I wait for God my Savior; my God will hear me.

May 22, 2006 at 9:36 pm 4 comments

5/20/06 8:30 pm

We spent much of today with Mike, beginning at about noon, and it was a very good day.  Mike was completely alert and aware all day.  We spent a long time outside.  Mike watched McKaela running around and being swung around by Michelle's friend Desiree (who is visiting from CA), and he held Eli (with a little help).  It was a beautiful day out, and I was glad that Mike could get out to enjoy it.  It was wonderful to spend time with him, to converse with him, and simply to know that he knew we were all there together with him.  That may sound silly, but so often in the ICU I found myself thinking something like: if only we could be sure that he knows that everyone is with him….  Well, I believe that he knew even then, but now we can know that he does.  (It's always nice to move something from the "believe" column into the "know" column.)

Mike is trying to say ALOT.  This is great in its own right, because it shows just how alert and active his mind is.  He has questions, he is seeking information, and he wants to tell us things.  At this time, he is still having difficulty enunciating, but it is encouraging to note that he is trying to speak in long, complete sentences.  So, with the verbalization skills that will come with speech therapy, I believe we can expect Mike will be talking people's ears off.  Still, he is clearly frustrated by not being able to have us understand everything he is trying to say.

Some important prayer requests would include the health of Mike's left eye, success with speech, and progress toward a removal of the tracheostoma, which could make speech easier for him.  Every bit as important would be prayer that Mike not suffer discouragement as he begins to realize what has happened and what challenges he is now facing.  Mike's conscious understanding of his condition is only, perhaps, days old.  He does not remember the seven weeks at Edward.  So, whereas we have had two months to come to terms with all of this, he has had just days.  Please pray that he be guarded from despair.  And please remember that prayer remains the most important thing we can do for Mike, Michelle, and the kids.

We have so much be thankful for also!  How desperately we wanted to have a day like this two months ago!  We really have witnessed a miracle here, one that continues to unfold.

May 20, 2006 at 9:56 pm 8 comments

5/18/06 10:50 pm –just for fun

     Because of mike's tiredness we kept our visit short today but before we left I asked McKaela to say goodbye and tell Daddy she loved him.  (So she did).  Then I asked Mike to say goodbye and tell her I love you too.  (So he did).  I love when everyone obeys!  (Just kidding).  Mike did try to say other things to me today but it is difficult to understand sometimes.  But my mom can vouch that the "I love you" to McKaela was pretty crystal clear.      Your continued prayers lift Mike before the throne of our God and the comments simply lift me from the tiredness.  Thank you so much for all you have all shared with us.  I pray that the Lord is refreshing you just as you have refreshed us!

May 18, 2006 at 11:00 pm 13 comments

5/17/06 9:10 pm

     I know it can be frustrating to keep checking for updates and find nothing new.  It is somewhat frustrating not to know something new to update.  Mike is holding steady with all of his new progress.  He is still attempting to move his lips and make sounds-sometimes discernible, sometimes not.  When visiting at night I find that he is tired and less receptive to impressing me with his newfound capabilities.  However he is alert and attentive with his eye open even though he is tired.  He without fail will nod yes to being tired when I finally get around to asking.  (I don't like to ask too soon into my visit because I am not always ready myself for our visit to end too quickly).  I did ask him tonight whether he liked visitors and he nodded yes.  Later I asked if he wanted to go back to bed and he nodded yes.  I started feeling bad that I was doing more harm than good in visiting so I asked if he liked that I had visited and he also nodded yes.  (He does shake no at other times so don't think he was just being a yes-man).  So my conclusion is that if you are visiting, maybe keep it brief in this next week or so until more of his strength is returning.  But I do believe he enjoys seeing the faces of friends as far as I can tell from his answers and reception of company.  He was not using words with me tonight no matter how much I asked.  But as I wheeled him back to his room I asked one last time for him to say "Mom" to me and he belted out "Mom".  I asked him to say "Dad" and got nothing so I told him he had a few weeks to work on it until Father's Day.

     Medically, Mike is still doing well.  I am not sure about the fluid in his lungs.  He is still on antibiotics for it.  He has had his trach tube in his throat capped throughout most of the day but has been receiving some oxygen at night.  They are beginning to wean him from the night oxygen completely as well and still hope to remove the trach soon.

     I did finally read some literature from Marionjoy which they keep in his wheelchair binder.  It explained that immediately after injury they use the word coma to describe the patient's condition but by the time a patient gets to Marionjoy they prefer to use a different terminology for assessment because of the patient's increased awareness.  So Marianjoy will not talk about Mike being in a coma.  (I believe he might technically be in a semi-comatose state.  Then again i could be wrong).  Anyhow, they assess Mike using the Rancho scale of cognitive levels 1-10 and Mike is currently at level 3.  I read that you do not necessarily progress up this scale like a ladder however.  Instead you might display more than one level at once or even skip a level in the gradual progression toward the goal of level 10.  I found this enlightening and helpful to understand what to expect in coming months.

     I don't have a particular verse on my heart right now but maybe this one will speak to you today…
1 Thessalonians 5:10-11    He died for us so that, whether we are awake or asleep, we may live together with him. Therefore encourage one another and build each other up, just as in fact you are doing.

 You all certainly build me up, and it is pure joy to see Mike being built up by the Master Builder.

Thanks and love, michelle

May 17, 2006 at 9:39 pm 8 comments

5/15/06 11:27 pm Progress!

     Mike was assessed by his team of therapists and doctor today and was given a tentative length of stay.  They plan on his being discharged from Marionjoy on June 22.  Depending on his progress he could be moved on to another care facility or they may discover he would benefit from staying a bit longer and then being released directly home with a live-in caregiver (someone experienced but not medically trained).  This plan is both stunning and exciting.

     Mike has made remarkable progress as far as I can see.  While awake and alert for a few minutes at a time previously, Mike can now stay awake and alert for hours at a time.  He is being given antiobiotics to combat any sickness due to the fluid in his lungs.  He is also getting a larger dose of the drug that increases alertness.

     Today they capped his tracheotomy tube in his throat which allowed him to attempt speech.  It is difficult and he had to work at pushing air and sound together to get his voice heard.  It sounded a bit like a breathy moan but it did form words.  He said "one", "hi", "Mike", and "Michelle" to answer various cues and questions.  He also practiced different vowel sounds and mouth shapes and even tried to stick his tongue out on command.  His smile is coming around with some effort.  And everyone working with Mike is now being advised to ask him yes and no questions that he can nod an answer to.  He has indicated he is not in pain, that he did not want to take a walk, that he did like seeing pictures and that he was tired and indeed ready to go to bed using this nodding method.  He is very willing to wave and wiggle his fingers and specifically waves his fingers when someone says goodbye to leave the room.

     His therapies are going wonderfully and they are seeing the improvement they seek.  I am trying to give a clear picture of how Mike is doing but honestly it is difficult to use real words and not just shout YIKES, CAN YOU BELIEVE IT?  The more alert he is the more I hope those who are able try to visit once a week or so.  I believe that as he is more alert; he will be more appreciative of the chance for some more face to face contact.  Again, visiting is 9 am to 8 pm Sundays and 4-8 pm Monday through Saturday.  MarionJoy is on Roosevelt on the south side between Winfield and Naper Blvd./Naperville Rd.

     Please pray… for no complications and a clearing up of the fluid collecting in his lungs.  For Mike to have less secretions and the ability to cough them up and clear them enough that they would be able to remove the tracheotomy completely.  For his speech progress.  For the continued compassionate and skilled care from his doctors, nurses, and staff at MarionJoy.  And be sure to shout some praise!  Thanks for keeping up with the prayer as well as the encouragement and generosity!

giddy and grateful, Michelle

Psalm 136:3-4     Give thanks to the Lord of Lords, His love endures forever. To him who alone does great WOnDeRS, His love endures forever!

May 15, 2006 at 11:55 pm 19 comments

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